Recipes

Milk Recipes
TIP FOR INFANTS: You may need to use a feeder nipple to bottle for some of these recipes, also don’t be afraid to add baby cereal to milk
For breast fed babies.
Mother should consume cod liver oil, hemp seed nut and her favorite form of good fat
For formula fed babies:
Grind hemp seed nut in purified water, use this water mixture once to twice a day with formula (should consume 1/8 of a tablespoon a day)
For more protein throughout the day you can also buy a protein powder of choice and add one half the recommended adult amount into regular formula mix.
Goat’s milk:
Use Mayneberg condensed goat milk (found in the baking isle in some grocery stores, health food/natural food store, or online)(if using farm fresh make sure it is a trustworthy source and fed with good feed, make sure if not pasteurized, pasteurize it yourself at home)
Empty one can condensed goat’s milk into a pitcher
Add three cans worth of purified water into the pitcher
Add one to two tablespoons brown rice syrup into Magic Bullet or blender
Add a tablespoon of hempseed nut into Magic bullet or blender
Add half a cup of purified water into Magic bullet or blender
Add two acidophilus capsules opened up into Magic bullet or blender
Liquefy all items in Magic bullet or blender to the best of your ability
Add this mixture to the mixture in the pitcher
This should be drunk in 2-3 days and then is no longer good. If you find yourself going through it rather quick you may want to double the recipe.
(Little room in the fridge? Cut out three cans of water and turns into a concentrate, also great for flying or traveling. Just add one fourth of mix to three fourths purified water)
This recipe works up to one year old then it needs to be changed to whole milk version by using one can of goats milk to one can of purified water. For concentrate version add half of whole milk mix to half water.

Soy milk one year and older
Start with your favorite brand and flavor of soy milk
Add 2 tablespoons hempseed nut,
2 opened capsules Acidophilus,
1 banana (optional) into magic bullet or blender with soy milk and blend, make 20 oz at a time, or more if preferred and keep chilled

Baby Cereal
* When it comes to baby cereal it is best to choose a brown rice cereal, you will want a feeder nipple or the bottle if you are adding to the milk, which is recommended from birth till off the bottle in every bottle.
* If your child has allergies make sure to check out the ingredients, some baby cereals use whey and other ingredients.
Homemade Cereal Mix
Grind in grinder or Magic bullet all ingredients. Then add and mix together.
2 cups plain rolled oats
1 cup flaxseed meal
1 cup grape nut cereal

Mixing Boxes
I find a lot of times that it seemed to be more cost efficient to mix and using other regular adult cereals together. This is a simple preference thing so be creative with the different grains. Remember trial and error is the best way to learn.
Baby Food
Banana-Avacado
1 ripe avocado (should feel firm with a slight give, not squishy)
2 regular size bananas
½ squeezed lime (or tablespoon lime juice in a bottle)
¼ cup purified water or milk of choice
Puree all ingredients, fill in ice cube trays or small plastic containers and freeze. If in a container without a lid or in ice cube trays transfer and date in baggies.

Banana-Nut-Avocado
Same as above but add 1tablespoon Hemp seed nut

Papaya and Banana
1 ripe papaya cubed and steamed, or blanched
4-6 slightly heated bananas (put full banana in skillet and warm)
Puree both fruits adding purified water if needed.
Freeze and store as suggested as above

Applesauce
Wash, peel and core apples, cut into chunks
Add to crock-pot or to pot on stove with an inch of water
Cook on high covered till they are completely soft all the way through
Mash by hand or puree depending on consistency desired (for texture kids puree it)
You can use this for administering enzymes and not worry about added sugars; also it makes a great add in item to any of your other fruit purees.
Apples and Apricots Apples and Mango
Apples and Blueberries Apples and Guava
You can also make pear sauce the same way and mix it with many fruits as well.

Iron Please
1 bag of lentils cooked (sort clean and cook as directed)
Start with 2-3 tablespoons of purified water
¼ teaspoon salt or to taste (season as you so chose)
Puree ingredients
Freeze and store as previously directed
Lentils tend to be a little bland on their own some kids like that and some do not, if your child doesn’t feel free to mix with veggie puree such as sweet potatoes or sweet peas
Veggie Puree
Choose your veggie, cooked in water and oil, steamed, or blanched
Puree the cooked veggie
Freeze and store as suggested as above
Feel free to combine any veggies you feel would be good
Season as your family would season
Taste test

Fruit Puree
Choose you fruit and blanch, bake or steam except avocado and banana which are fine raw
Puree the fruit with either milk or purified water
Freeze and store as suggested above
Feel free to combine any fruits you feel will be good
For added sweetness bananas add good sweetness as well as 1-3 tablespoons honey
Taste test

I will be the one to tell you that you can look up recipes on line and you can follow them to a T but its really simple and to the point. Cook it, and then, puree it. You can get creative or keep it basic. What seems to work the best is when cooking your family dinners make extra of the veggies and consider other foods that you can puree. Also think about how you eat it, if you have sweet potatoes do you butter and brown sugar it? If you have regular potatoes do you butter and salt, butter salt and cheese? Whatever you do, consider making it a puree-able version and turn it into a meal for the baby. A little bit of real butter isn’t horrible, just don’t overdo it; consider olive oil or nut oils and other supplement items to mix with foods to pack an extra punch.

Protein Shakes

Brandon’s Ultimate Protein Shake
¼ to ½ of and avocado
¼ to ½ of a banana (or more if you so choose)
1 tablespoon hemp seed nut (1 tablespoon per 25 pounds)
1-2 quarter size piece shiitake mushroom (no stems)
1 open capsule Acidophilus ( if not added into daily milk)
8 oz milk of choice, fill till full in Magic bullet, or 20 oz mark (if using soy milk I use flavored, not plain)
Put all ingredients into a Magic bullet or blender and liquefy, Enjoy!

Penny Pinching Protein
½ of a banana
Hempseed nut (1 tablespoon per 25 pounds)
8 oz milk of choice
Put all ingredients into a Magic bullet or blender and liquefy


Meal Time
Pappy’s Pancakes
Use the std. amount of pancake mix (I use heart healthy Bisquick mix)
add and mix the following:
(do not add water) I use Vanilla Soy Milk and use 1/4 +/- more than the water that is called for
1/4 cup instant oatmeal
1/4 cup flax meal
1/4 cup vanilla yogurt
1 teaspoon cinnamon +/- to taste
2-3 drops of vanilla extract
1- 2 eggs
Mix until smooth and let stand for a few min. while your cooking device warms up.
This is not a quick cook pancake keep your cooking temp a little lower, take your time and have fun.
I add nuts, fruit and whatever anybody likes to the top once on the cooking surface then lightly spoon more mix on top of the added ingredient before flipping.
Mama’s Grits
1 can of instant grits (cook as many servings as you choose)
½ tablespoon of real butter per servings
½-1 tablespoon honey per serving
1 scoop egg white protein per serving
Serve and enjoy!


Easy PBB&H Pinwheels
1 large wrap (whole grain preferred)
Add peanut butter to wrap
Add 1 tablespoon honey, spread throughout
Lay whole banana on wrap and roll up
Cut into 1 inch pinwheels

My Mac is Packin’
1 package cooked macaroni noodles (gluten free or whole grain preferred)
1-2 packages shredded cheese of choice (I usually go for cheddar or colby jack, you may also use veggie cheese for milk allergies)
1 container cottage cheese (may use tofu crumbled or feta crumbles), add 1-2 eggs and blend with spoon(omit for egg allergy)
Preheat oven to 350 degrees
Layer noodles, cottage cheese blend, and then cheese into a casserole dish or baking pan, continue to layer until you are out of ingredients.
Place into oven and bake for 20 minutes or till cheese is melted

French Toasty
For 1-2 sandwiches
2 eggs cracked open into a bowl
¾ cup milk of choice (unsweetened) added to bowl with egg
¼ teaspoon salt (or season to taste, I like to use chicken seasoning mix)
1-2 slices non processed cheese of choice (use veggies slices for milk allergy)
2-4 slices bread of choice

Whisk eggs, milk and seasoning in bowl
Heat skillet on medium heat
Dip slices of bread and lay on skillet
Flip when first side is golden brown
When both sides are cooked add cheese on top of one slice and place second slice on top of cheese. Continue to cook and flip if needed like a regular cheese toasty. For texture issues smush bread flat so there will be no soggy center. For toddlers cut into four squares or strips. If your child eats meat consider adding sliced deli meat of choice.

Also great to use extra French toast slices from breakfast into a great lunch or dinner.

When you are cooking have fun and experiment often. Chose necessary staples for your cupboards and keep them stocked. Here is a list of my staples and some of the uses:
• Flax meal: add to meats, add to baking recipes which is directed on packaging, add as a thickener to stews and sauces, also may add to shakes
• Hemp seed nut: add to shakes, beverages, use as a topper to nearly anything(salad, potato, meat, stew, ect), very versatile and great to add to whatever I can
• Egg white protein: add to shakes and hot cereals, add to nearly anything aside from bland flavored foods, unless egg is a appreciated flavor for that dish
• Gluten free pasta: for a quick pasta dish, use anywhere you would use regular pasta
• Gluten free flour mix: use in place of white flour, not only is white flour bad for CF’ers most gluten free mixes have nut and bean flours which add a great amount of protein.
• Xanthium gum: add with gluten free flours per recipe specification
• Tofu: add in place of meat to stir fries and soups(firm), add to shakes in place of yogurt (silken)
• Your families choice of milk: use for drinking, shakes, and other recipes
• Eggs (farm fresh preferred): use as part of your yummy breakfast, used a lot in many recipes
• Olive oil: use for cooking or sprinkling over steamed veggies, add favorite seasoning as a dip for breads or veggies
• Shiitake mushroom: added to shakes, stews, soups, salads, and eaten raw dipped in dip or oil
• Avocado: added to shakes daily
• Banana: added to shakes daily, eaten raw along with breakfast or for snacks
• Papaya puree used to give enzymes and added into shakes, or papaya chewables, serve as enzyme booster and ant- acid
• Acidophilus added to milk or applesauce, if able to swallow pills takes on an empty stomach with water.

Conclusion

A Cystic Fibrosis diet can be healthy and thrive. I am very passionate about healthy eating in general and have seen the wonders it has done for my son living with CF. With each generation the median age of life expectancy grows rapidly. Just because one has CF does not mean it prevents them from other ailments, I see so many things in Brandon and his diet that is considered by many rather strange and non CF like. My Aunt Jill, mother to Rachel with CF, even stated she didn’t understand Brandon’s diet because it was rather different from Rachel’s diet. I have been rather impressed with all the things I was stumbling upon in Brandon’s diet. It became clear to me that diet is extremely important to the health of all CF’ers. This is not any secret, but I don’t think many have really committed to eating healthy when for so long it has been accepted to just get the fat in, no matter the source. To be honest I would have to say it would have not really happened this way for me if it weren’t for Brandon’s allergy and texture issues. I had to get creative and it worked, and it worked well. In the beginning I admit that I was nervous to do things outside the normal way. I know that many around us were nervous too. I know I had support and many people pulling for Brandon. Some of it felt like dumb luck to me at first until I understood it. I was just going for healthy and high fat, high protein. Brandon was the one who did most of the work. It has been a long road for all of us involved. If it weren’t for our friends, and family and Brandon’s care team at the CF clinic we wouldn’t be where we are today. Although it has seemed like Brandon never truly “struggled” with his weight, it has always been a fight. Brandon was always a step ahead of bad. The anxiety and stress on us all, and the inner thought of “is it going to be enough” lurking at every weigh in. Deep down I always knew these things stacked up against him could have quickly and easily been the death of him. I used to cry at night in prayer wanting that miracle. I know that I was presented with the opportunity to make that miracle happen.
I started out just giving Brandon a protein shake here and little papaya there, observing what it would do to him. After the threat of the feeding tube I felt like it was time to put my beliefs and knowledge into full action. After a month’s time I brought Brandon back in for his follow up appointment and he gained two and a half pounds. When his doctor came in and examined him she was shocked at his weight gain and then she asked how we did it. I told her about Brandon’s Ultimate Protein Shake. She wrote down all the ingredients and looked at it for a second and looked up at me and said “I am glad you found out something that worked for him, keep up the good work!” Then she talked about other matters and left. My husband looked at me and high fived me, he said I looked like I was gloating in my head. Truth is I was smiling from ear to ear and I was proud of myself, of course there was a part of me that was singing the praise song, “I did it, I did it, Yay!” and then it moved into an imaginative happy dance. This was a confirmed success that this was it, not just for my little boy but for all CF’ers it was a moment of joy for me. I found out what works! Since my plan works it almost sounds silly to go to the old way of butter and fast food. I can’t know, for right now, the impact as far as life expectancy. But I can make a good guess that CF bodies will be more equipped for the fight, by upgrading their armor. It’s time to embrace a healthy way of CF living

Working with Texture Issues

On top of all the other obstacles we have faced, Brandon also has a texture problem resulting in a harder feeding time. There were things I figured out on my own and things that were beyond my abilities. While lurking on the support group boards I noticed it seemed to be a common thing among CF’ers. One day my mom came to me and asked if I could write down Brandon’s Ultimate Protein Shake recipe to give one of the regular shoppers in her store. She knew I wasn’t finished with the book yet and this woman has 2 grand children (twins) with CF and they too have texture issues. This is when I thought it was something I really wanted to address and figure out. You know me, no stone unturned.
In my own world it had always come up that Brandon most likely had these issues and it seemed like no big deal to me, I have always had texture issues myself. It came across as really picky in the beginning, certain cereals in his bottle, no cereal in his bottle, not the right consistency. We figured out what he liked and we went with it. I figure if he liked it, continued to like it, and was gaining and healthy why change it. When I started making baby food for Brandon I felt like a failure because he really wouldn’t eat most of it. There were a few choice things he would eat and luckily they happened to be the things I mostly wanted him to eat. The clinic on the other hand had other ideas of what they would like to see him eat. I went with my same theory and continued feeding him the things he liked. If I tried to feed him the other things it was a lot of vomiting and cranky baby, it just didn’t seem worth it to push him. In some ways I figured as long as the right nutrients are there, does it matter if there was a wide variety?
As Brandon grew older and was working his way to table food he was very selective in what he ate. Meat and eggs were on the highly dislike list for him, and I understood because I am extremely picky in those areas as well. Brandon leaned to hard and crunchy or consistent in texture like grits. Things that didn’t appeal to him were slimy, soggy, or things that could vary in texture. From talking to others with texture issues this varies between each person. I remember growing up and having people comment on the way I separated my food, and they found it odd that I had as I called it a “soggy phobia”. It is actually easy to work around once you are in control of what you are putting in your mouth. It can be embarrassing because sometimes a certain food is fine until there is a texture that you feel and then you are done, there is no forcing yourself to finish that bite. Once you experience that you pretty much are done with that food forever. In high school I worked at a fast food burger place and at times would eat their chicken sandwich. One day I bit into the sandwich and there was a change in the texture, a small, little bit harder gristle or grit and I thought I was going to be sick, still to this day I feel sick at the thought of that sandwich. When I went out to eat and wanted a burger, I had to order the bun toasted and on the side for me to assemble myself. All meat has to be trimmed and free of fat and gristle. For many years I claimed I didn’t like chicken because of how picky I was with it, I didn’t want to offend anyone by picking through and trimming out all the pieces I couldn’t handle eating. Same went for other meats but it seemed to be more acceptable to trim out your steak. I couldn’t eat the box mixes that you add your own hamburger, for some reason they gave a strange grit to the burger and I couldn’t handle it. To be honest these days it’s easy because I am usually the one to cook, when my husband cooks he is familiar enough with my specific likings that it usually doesn’t get in the way. I no longer eat wheat which cuts out a lot of the “soggy” food in my diet, but there is a lot I will not eat. The point is it hasn’t stopped me from eating altogether, it has just changed how I eat compared to others. I had to learn a new way to eat foods and find out specifically what it was that I didn’t like about particular foods. Many foods it turned out that I could still eat it just in a special way. I remember eating cereal with my siblings and getting about three bites in and then it was too soggy. I learned to bring the box and pour a little in at a time so I could eat the crunchy cereal with milk.
I wasn’t panicked and really didn’t respond to the fact that this was a possibility for my son, it felt normal to me. I thought more about what I was trying to feed him. I took in to account of the things I wouldn’t eat because of the texture, which was a lot in baby world. Everything is odd textured when it comes to baby food and the things you try to start out with for table food. Funny things like pureed banana were good, but a banana wasn’t. It seemed like aside from Brandon’s shakes, which he loves very much, he wanted crunchy. The only thing that he would eat besides crunchy things were grits, now I know this sounds silly but I agree with it, grits feel like crunchy food in your mouth, they are consistent in texture, and they are yummy. The thing about crunchy and grits is most of it isn’t really packed with a lot of great nutrients. I went on my merry way of feeding him according to his texture issues, but this was not really what we all wanted for him. I found it silly and understandable at the same time when they wanted to refer Brandon to a group to aid him in this area. On one hand I felt, I am fine I never needed to have help, and then the thought crept in that it’s really cool that they have help for this issue. After meeting with Brandon’s Occupational Therapist I was really happy to see the ways that they would work with him and try to get him comfortable with food textures. If your child has these issues there is a lot you can learn from an Occupational Therapist and there may even be a state funded program that sends them to your house at little to no cost.
My whole take on this process is it’s a process. You still need to give your child what they need no matter how that happens. I have never felt a feeding tube is the right answer to Brandon’s pancreatic issues, especially when I hadn’t tried other methods. I do agree for some people it may come to this, but it isn’t amongst the first answers, but the last. I believe in the things we have done and that it works, I have seen it work. I feel that we need to trust our abilities as parents to make these choices for our children. It can get confusing and overwhelming and at times feel impossible. This is when you look to the medical staff and nutritionist to help you. Communicate and work with them, they are your team. I think texture issues are a big factor for a lot of CF’ers and that’s ok. We should be ready to work around these obstacles and we shouldn’t let these obstacles scare us. I guess to me it can come off discouraging, and when you are discouraged they become stressed out. Learning how to eat around the textures I don’t like was the best way to open up more possibilities. I enjoy a breakfast protein shake filled with the same things that many people may just eat. I prefer to eat the things that aren’t going to make me get sick. I am not saying that it’s not good to try things, like I hated asparagus as a child but love it as an adult, but that had to do with taste, not texture. You may find over time there is a common thing like “soggy” and you can learn to prepare foods so they aren’t “soggy”. When you have an Occupational Therapist involved at an early age there may be ways to decrease the issue or work them into it slowly. Either way it’s worth a try and continue to supplement until they get there.
I want you to understand that this isn’t horrible, it isn’t a big deal, and it is just different. Feeding tubes are very useful, for the proper reasons. I have always had the attitude to do all that I can to avoid a feeding tube. If your child still will not put weight on it may be the right option. Feeding tubes are not evil, it’s just something all us parents pray our children don’t need. If your child isn’t ready for certain textures, or may not ever be able to handle certain textures, its fine. When you get upset and worked up over it they just feel inadequate, it doesn’t change the fact that there is no way they can physically eat this food. Your job as their parent is to figure out what they do like, and what they will eat, and find things like that to give them. If your child likes crunchy, get creative. Look high and low in the grocery store for healthy crunchy foods, broaden your own horizons. Their texture issue isn’t about you and the food you like, it’s about them and the food they like. Once you learn to work with any issues that are different from the norm, instead of fight against it, life will get so much easier. There is a big difference of fighting alongside something, and fighting against it.
It’s going to be tough, and it’s going to take time to get your routine down. I have my texture issue, and wheat and whey intolerance. My husband has his reflux and stomach sensitivities. My daughter has whey intolerance, and dye allergy; my son has texture issues, milk allergy and high protein, high fat diet. There are times where it’s not just a cut and dry meal. I think in most houses it is this way, or people go hungry. You have to know the difference of when and how to be strict with food rules. It is highly unfair to offer a child something they don’t like and that is the only offer of food. It is, on the other hand, perfectly fine to let them make the choice not to eat and go without when it’s something you know they like. With Brandon I make the meal/meals that are planned for that meal time and I cut up and offer him whatever is made, I give him his enzymes and let him play in the food for a good amount of time. There are sometimes where it is clearly undesired and not going to happen and within a minute it’s on the ground. Other foods may make it the first cut and serve as something interesting to play with for about five minutes, and then is tossed to the ground. When it is something he is considering and unsure of he starts fiddling with it for a while, touching it to his mouth, maybe even making it into his mouth, and then either swallowed up as something he likes or spit out and played with some more. Generally most meals don’t please me enough as a sufficient meal for Brandon, the things he chooses to eat isn’t enough. I follow up at the end with a shake to make it a complete meal and he really prefers that right now. Brandon eats solid foods just not the ones we all would like for him to eat, and that’s ok. Supplementing is ok, and is what is mostly important in cases like this. As time goes on, his communication gets better and his willingness to try new foods increases. On some days it can frustrate you, on other days you can look at it as an opportunity. This isn’t hard once you get it down, it’s just something new you have to learn. Dealing with texture issues is going to be complicated if you don’t decide to look at as a way of life. If your hair has a colic in it you know there is no sense in fighting it, it’s going to do what it does, it is best to work with it and find a style that complements it. The same is true for all things this included. Find something to work with it and compliment it, it will take the stress off you and your child and over time it will find its own unique way of things and be no big deal.
It is interesting to me how many people with CF struggle with texture issues, mostly in young children. What you may be facing may be food aversion issues in general. This is actually better than a texture issues once resolved. Our children are set up for failure to thrive on food from day one. Not only do they have the CF factor, they most likely have GERD (gastro esophageal reflux disease). After you factor those things in, then you have to factor that at very young ages they are forced to take medicine in food, and have vitamin supplements orally as well as other oral medicines. Everything they put in their mouth is not pleasant, and then we try to put food in their mouth and it causes an instant rejection. This is completely understandable. Oh and let’s not forget breathing, I find it harder to eat when I am sick and I am having a harder time breathing, yet our children have a hard time breathing every day. I can imagine it would be exhausting and sometimes painful to eat once you consider all the things they have going on. This is when food needs to become fun, play with your child and their food, search out a good Occupational Therapist who knows silly tricks, or try some on your own. Once the stress is off and as long as things are not rushed and fun they may be more willing to put something in their mouth. It is a process and there will be times of regressing when they are stressed. It may also be used as a form of control. When we feel out of control and highly stressed we are going to find things we can control.
We as parents need to sympathize and give them control in other ways. Make eating something fun to do and rewarding with a lot of over exaggerated praise and respect for choices. No shoving food in and tricking them, if they turn their head it’s a sign that they do not want what you are giving them. You know your child so listen to them and incorporate things that they enjoy to help the process. Brandon likes to have a big production for his accomplishments. We started with puzzles, he would get a piece in and we would say “YAY” and clap, when he completed the puzzle (with a little help) we sang a song of praise, “I did it, I did it, Yay!” He looked for this praise more and more, so then we went to use it with food. I used an accepted food and when he put it in his mouth I said “YAY” and clapped, when he finished the grouping of food then we sang his praise song. I moved to less accepted foods with the same theory. The most important thing to understand with this is, if they touch a food they really don’t want to then yes, praise them, but only praise them with this until it no longer seems to bother them. They are smart and will not put it in their mouth if they can get the praise without doing so. Today Brandon was presented ground beef. He was praised for touching it because he showed great resistance to touching it. I guided his hand to it the first few times until he became more comfortable with it. He really wanted to get the praise. After about ten times of this there was no longer resistance and he would touch it on his own. I then guided him to touch it then lick his fingers, which he displayed resistance. I praised him when he licked his fingers and after a few times of guiding him he did that on his own. Once he did each thing on his own he got his praise song. He was celebrating with me and saying “I did it” in his toddler talk. We continued this routine and forked a chunk of the meat into his mouth, it was very apparent he wasn’t in love with it, but he wanted the praise. He did this a few times to get his song and then he was done for the day. I respected his stopping point and will present the ground beef after a few days have passed again. Brandon is a pleaser, so making me happy and getting praise works for him. Not all kids will use this style, so you need to figure out what your child likes as a form of motivation. I will not take all the credit on figuring this out either. I had lots of help from Brandon’s occupational therapist and grandma, working together and having fun with it has gotten us very far.
With a lot of hard work and patience you and your child can get through this and it will be rewarding for you both. The biggest key is to not give up on them. You need to take the stress off of you too, they will feed off of you. Whether it is a texture issue, food aversion, control issue, or possibly several issues, it can be conquered. Don’t give up on you child and don’t let them give up on themselves. If they see you give up on them then they will give up on themselves, setting the stage for the rest of their life in this disease. A lot can happen in just one month and especially in three months. Talk to your doctor and seek assistance, research ideas and devote yourself to your plan. As silly as it sounds one thing has always stuck with me especially in hard times such as these, “I can do all things through Christ who strengthens me” Philippians 4:13.

Nutrition

When it came to nutrition, I was usually up and down from feeling confident to feeling very frustrated. In this chapter, I will explain more in detail about the things I found and learned by observing the effects on Brandon. I believe in the benefits that have shown to be true for him. It seemed like the clinic nutritionist really tried to find answers but with Brandon’s issues it was a never ending battle for us all. When the confirmation of Brandon’s milk/whey allergy came I think it was very frustrating, considering all CF’er are recommended to consume a lot of dairy to help their weight. I have lived with a whey allergy myself and dealt with it with my daughter, but not at all in the way of CF. To add to the frustration I still couldn’t help but think there was a healthier way to feed my son’s CF body. The very thought of being told to give your child a bunch of fattening junk made me just sick to my stomach. Like stated in chapter one I really agreed with BMI, but it needed to be good healthy BMI. I know many others in the CF community didn’t understand the different kind of diet Brandon was eating. I think the clinic was just watching with curiosity at what we were doing, I figured we all assumed as long as he was doing well then keep it up. I am sure there have been many times of concern from others, many people in the support groups didn’t hold back at their views of a CF diet. But that is ok because different, at first, can be weird. After we talked about Brandon being on goat’s milk, his CF doctor became concerned with his levels and tested him for everything possible. I was happy to know that he was still getting what he needed. There was a very slight low in iron which we supplemented for. Brandon was gaining great amounts of weight and impressing the clinic. To add to it, every time he was in, his oxygen saturation was 100%. He felt good and looked good.
I found I was still struggling with understanding the enzymes fully and asked them if he was on the correct dose. The response I got from this was he was already on the highest dose for age and weight. Brandon still had that stringy greasy look to his bowl movements but not horrible. We noticed he was gaining weight great so not a big concern, right? Being me and who I am, nothing is good until it’s perfect. I started my calls when I got home. First to our family pharmacist and friend, I asked him to fully explain what he knew of the enzymes. He checked on it for me and said that he was on the right dose for age and weight, and he wouldn’t advise me to give any more. I asked about the time frame. I am not sure if this is different with each company or a general rule, and I do advise you to talk to your doctor or pharmacist before following what I learned. Brandon’s enzymes would have a life of 2 hours. As my friend explained to me, just because it’s in your stomach for 2 hours doesn’t mean they are good for 2 hours. If you give your child the enzymes and then go to offer them their bottle or food and they aren’t hungry you could safely say they are good for that full feeding up to the first hour. If your child takes that first feeding and then wants a small snack up to an hour and a half after feeding you should be ok. If your child takes the full feeding then wants another full feeding an hour later, you need to give more enzymes. The longer they are in their stomachs the weaker they get because the stomach acid starts breaking them down and they are completely dead at that 2 hour mark. So as a general rule we claimed enzymes were good for an hour I didn’t want to push although there have been times I have pushed it further, like trying to give a bottle before you leave the house to go to dinner and they refuse. Then you get to the restaurant and they decided they wanted the bottle at the hour and fifteen mark. Or he started being picky and finicky and I was unsure if he would eat enough to need the enzymes and would wait until I saw how much he ate, if it was little I let it slide from the previous enzyme dose an hour and a half prior, if it became a good amount I would then give him more.
Ok, I had the timing down but still was unsure of the amount, and although the doctor and pharmacist said he was at the max, I just didn’t think it was right for him. I logged back on to the good old computer and went to my favorite source of input, support sites. I had several I was a part of, so I went and asked about enzymes and everyone’s response was that you need to find what works. What did that mean I still wondered? I looked up the drug company’s site, but found no good info. I was ready to scream, or cry, but I knew neither would help. I had one other source that I hadn’t talked to yet but was well on my way to what was going to turn into a great phone call. My Aunt Jill (mother to 28 year old Rachel with CF) was the only one who would be blunt with true experience. I explained that Brandon was on the “highest dose” and she put it to me like this: The highest dose isn’t really an exact number it’s more like a recommendation. She said “play with it, you’ll know. Everyone is so different with this disease and whatever works is what is right for each individual.” Rachel still has to play around with her enzymes as will any CF’er, it is an art!
The one thing I do know, is it has to do with fat, protein, and starch. The higher the amount, the more enzymes. For Brandon, he has always sat on the edge of the highest dose. This means if he had an average fat and or protein meal he would take that prescribed dose. If Brandon were to have a high protein and or fat meal it would need to be increased. I have learned not to fail at putting extra fat and or protein into everything possible which generally meant he needed higher than the prescribed dose. This is where booster food with natural enzymes helps as well, and will be explained further in this chapter. This is all relatively easy until you start working with solids.
I finally understood as all others do at some point, there is no right answer. I had the support and information, but truly I was on my own. I was and am the only one who knows Brandon well enough to determine what works best for him. When you are figuring out whether the enzymes are correct, the only answer and clue you have is in their poop. Get used to poop, go ahead and get your badge for poop specialist because this is the one and only way you’re going to get any answers. If you are new to this specialty what you need to know is when the poop is extremely foul with fat deposits there are not enough enzymes. It will look stringy, greasy and or runny, I have heard so many different explanations but if you’re unsure or this is your first child and you don’t know what to expect in baby poop, just ask. As silly as it sounds, offer to change your friends babies when they poop so you can see what ‘normal’ is. If you are breast feeding, a normal poop will look seedy like small raspberry seeds in the poop. If you are formula feeding, it will be smooth unformed and gradually become softly formed yet still smooth. With a CF child, you will notice a major difference to none, depending on how much their pancreas is affected. With a highly affected child you will notice the odor. On top of the fat deposits, there will be a discolored splotch pattern from light to dark, and it will look shinny where its darker which is the fat deposit. You can also be on the lookout for the stringy poop, this shows up in more of the loose stool and is self explanatory. Although this usually doesn’t have a different color, just a rather notably different texture throughout. Now what if you notice this and feel like it’s time to up the enzymes? Go for it, but with caution. Communicate with your doctor about doing so, remember you’re a team and the whole team needs to be informed of the moves each player is making. Start small, we added a fourth of his usual prescribed amount in the beginning. You most likely will see in the next bowel movement whether it was affective or not, if there was no change or not enough change try adding more. As a general rule, I never changed a dose more than one time a day until I got to understand it better. The thing that you must be MOST careful about is too many enzymes. Too many are a bad thing and not fun. Too many will lead to hard and possibly compacted poop, this may result in pain and even a hospital visit if not watched carefully. Don’t let this turn you off from figuring it out, just pay attention to everything going on. If needed, chart so you can follow it very closely. Whatever you end up figuring out, let your CF clinic know what you have changed it to, either by a phone call or at the next visit. If it ends up being too much they may decide to change brands or investigate as to why so much is needed. It is very important to be up front and honest with the CF clinic. Brandon had several issues in this department and I believe I was promoted to poop expert at one point! I remember when I was in middle school I had a science teacher who had a huge science lesson on “Why some poopy sinks, and some poopy floats”, who would have thought that lesson was to prepare me in my sons pancreatic insufficiency. A great fail proof method is to see if poop sinks or floats. In simple terms there is a gas released from the fat causing the poop to float, when there is many floating poops it is a sure sign of malabsorption. When in doubt do the floating test! This was true of Brandon’s stools. I was on a mission and had increased Brandon’s enzymes and had reported so to the clinic, which they had calculated for weight and age and said this was fine. The following month I had increased his enzymes again, so he was up 6000 lipase, when calculated he should only be 2500-3000 lipase. This caused a big discussion between the CF doctor, clinic nurse, and pharmacist. It was decided that the brand he was on was not best suited for him, and they switched brands to a newer enzyme brand. Each type of food you feed your child will start with the prescribed dose. You will need to determine if it has fat and or protein in it as well as carbohydrates. Once you determine what’s in the food then you must determine how much of what is in the food. Once again, keeping a general log of food and affect is going to be helpful. Start with the common knowledge that most fruits and vegetables need no enzymes, although you will want to find ways to add fat and protein to anything you can in a healthy way. As if there isn’t enough to do, if at all possible it is wise to make your own baby food since your baby needs to eat differently. I had a few jar foods I would feed him and I had several recipes I concocted on my own. On the top of all the food, whether jar or frozen cubes of homemade goods, I wrote how many enzymes were needed. This way my husband knew, or when packing for a night at grandma’s she knew and I didn’t always have to be the one to feed him. Also in the beginning I could refer to charting to know how much to give for what. Although, after time it stores to memory rather well, but then it’s time to change again. Once you are off baby food you will need to go through the process all over again with enzymes, once again don’t be afraid to write on any package of food the amount needed. I headed to our local Health Food Store and asked one of the employees that worked in the vitamin/supplement area about good fats to add to Brandon’s diet. She recommended Hemp Seed Nut which is the only natural source of omega 3 and omega 6 in the proper ratio to work correctly in your body. When I researched hemp seed nut I found that it is the closest complete protein next to meat, milk and eggs . It was also said that hemp seed nut consists of 33% protein and 44% fat with 39% being unsaturated fat. I decided to add this to Brandon’s daily diet, more good fat and protein can’t hurt, plus it grinds down really nice in milk or water to boost any beverage with a slight nutty flavor. I called the manufacturer of the hemp seed nuts and asked the recommended amount to take and they told me it is one tablespoon per 50 pounds. Now I know you are having the same thought, what if my child has a nut allergy? Hemp seed nut is a fruit, not a nut and has no reported issues of anaphylaxis or allergic reactions in those with or without nut allergies. You need to double recommendations not already doubled for CF’ers. I also learned from the health food store that acidophilus is highly recommended for all people especially those more at risk to become sick. Acidophilus is a live bacteria that when added to your body will go in and eat all the bad bacteria. This had proven to be great for immunity, it is now recommended by many doctors to take after an antibiotic to restore good bacteria after it is all striped, as well as during, especially if there is diarrhea. I firmly believe in Acidophilus and the whole family takes it daily to help us fight off things that may come in contact with us. It’s also good to fight off yeast in the system, Brandon used to get oral thrush quite often until this was added to his daily arsenal. Acidophilus is gaining a lot of press lately as you may have seen. Yogurt is one of the power foods that have it in it, although it may be hard to eat yogurt every day, or like Brandon you may be dealing with a milk allergy or intolerance of some sort. At any health food store you will find a large variety of Acidophilus including vegetable based ones which for milk allergy/intolerance will be perfect. You may want to ask for help because there are a lot of kinds, you want to find something with the highest amount of microorganisms. Since CF requires higher food intake this goes for supplements and vitamins too. When seeking things you wish to supplement for infants to age six with CF, should use half the adult dose. Children ages six to twelve should take the adult dose. Teenagers from age twelve to seventeen should take one and a half the recommended adult dose, and adults should take double the recommended adult dose. This is not the same for medications and herbs as it is for supplements so be sure to follow the recommended dose unless otherwise directed by your doctor.
I found myself in and out of the health food store, often there are two women who work in the supplement/vitamin section they have both been very good at giving me great information and leading me to things to add to Brandon’s diet. I found out that papaya has the ability to get rid of mucus from the body as well as pack a good punch of immunity . We switched on and off with applesauce for giving enzymes. You can get creativeand add it into smoothies or you may also benefit from several brands that make chewable papaya based enzymes and or ant-acids. It is extremely important to use natural enzymes along with your prescribed enzymes which will be fully explained next.
At three months old Brandon’s CF doctor told us to start solids which is common in CF. I guess it makes sense because they are already getting supplemental enzymes so the concern of their bodies being able to digest it is out the window. I was one of those over achiever moms and was determined to make all Brandon’s food, I wished I had done this for my daughter, but felt it was even more crucial for Brandon’s diet. I started searching on the internet for baby food recipes and how-to’s. I found some really good sites and most of them had the same information and recipes, but there was one recipe that I found that would work for Brandon, it was called Banana’Cado . I started with their basic recipe and as time went on I modified this as well. You will find my version and all other recipes I have developed specifically for CF babies in the recipes chapter. I started seeing a major difference in Brandon’s poop when he ate foods with natural enzymes, bananas, avocados, papaya, pineapple and mango. The difference was good, and amazingly good. Brandon felt better eating these foods so much that he would rarely eat anything else. I let him eat what he liked as long as his numbers were good and it seemed to make him internally happy too. Now I completely recommend CF’ers eating a natural enzyme food frequently, it should not replace the prescribed enzymes, they should be used as boosters. The reason why is, your prescribed enzymes cover the three most important enzymes, lipase, amylase, and protease. Lipase is the enzyme responsible for breaking down /digesting most all the fat your body takes in. We also have amylase that is responsible for breaking down most of the starch, and the proteases along with other helpers break down protein. Our bodies are amazing and do have a back up to digest starch and protein, but unfortunately it isn’t all digested. The saddest part is there is no back up for lipase one of the most important things our bodies need. Papayas specifically, have a natural enzyme called papain that has the ability to break down protein. I use papaya because it is seems to be the best form of natural enzymes when extracted before it ripens, and it has the ability to calm down an acidic stomach. It is best and recommended to give this along with the prescribed enzymes to help break even more down, especially when adding in extra protein. All the foods with natural enzymes have the ability to aid in digestion, so feel free to eat plenty of the yummy natural enzyme foods.
Fruits and vegetables are good for CF’ers and should be given a lot. It is the one thing that their body can process on its own. Raw is the best way to eat fruits and veggies, and they are a great source of vitamins and minerals needed for growth and overall good health. Nuts and seeds are equally important at the proper age. All nuts and seeds have a good and healthy fat base, you will need enzymes to help aid in processing these good fats. Some findings may even say that fruits, veggies, nuts and seeds should be 75% of a CF’ers diet . The biggest thing to remember is that CF’ers need 50% more nutrients than a non CF’er. A high geranium diet is very good as well so pump up the garlic, onion and shiitake mushroom. These three food items have anti bacterial properties. Shiitake is a superstar food, it contains lentinan which is solely responsible in preventing disease and boosting immunity. Lentinan has been used to prevent viruses from reproducing and fights off infection. Lentinan has been approved as an official anti cancer drug in Japan since 1985. They have also seen it to be helpful in the fight against AIDS
I have learned a lot from experience but the biggest thing I learned is there is no room for pointless feeding and drinking. I always had a distorted view of needing to have water or juice. After a series of complaints to the clinic about Brandon’s poop just not doing good, I was advised to take him off juice unless I juiced it myself. His CF doctor said there is no need for juice. I kind of felt like this was becoming more and more unfair for Brandon. I tried the juicer and it worked but it wasn’t real favorable for Brandon, so he drank milk and more milk. Brandon started to migrate to filler foods, without even realizing it at first. He also stopped drinking goat’s milk and I was left with no other option than to give him soy milk. Brandon’s poop was still off and this is when the CF doctor told me it was the soy, and that I should not give him water, or let him dangle upside down when playing, or use a walker, or hold him around his waist, and so on… What can my child do? I tried a hypoallergenic formula that was recommended by the CF clinic. This is about the point where he didn’t gain weight and they said they didn’t like that. I was still trying this formula, but Brandon did not really like it. He maybe had one to two cups a day with a ton of chocolate syrup, it was the only way he would drink it. I was hoping this would help him dig into more solids. At the next clinic visit he lost a few ounces. They were not happy about this and said he had to gain weight by his next appointment or they would talk about a feeding tube. As we all know by now that wasn’t going to fly with me. I tried to follow their recommendations but nothing seemed to work. I know they really wanted him on a more traditional diet, but Brandon was just proving to not be a traditional little boy. The nutritionist came in and really had no answer as to how to put weight on him, we had exhausted all the things that should have worked. She had one thing that was a shot in the dark. Brandon loves grits, I make sure to butter them and sweeten with some honey, so the nutritionist gave me samples of egg white protein, and I figured it was worth a try. I went home and went to work. First I ventured out to the good old Health Food Store I looked at all their protein powders and one of the ladies helped me find the highest amount of protein in a shake they had. She walked away and I looked up at one can I hadn’t looked at yet, it was a sport version of soy protein powder, in chocolate. It was the highest by far so I bought it. I figure the whole soy protein thing is something we all will just have to deal with. I started adding this to soy milk in the beginning. I really was frustrated at the price and had hoped I could find a better option to supplement his diet. After time and research I created Brandon’s ultimate protein shake. I put soy milk, avocado, banana, hemp seed nut, and shiitake mushroom all together and blended it. This was loved by Brandon and still is a daily staple. I was asked to try lactaid milk, they thought he would have out grown his allergy, as many children do. Brandon’s whey specific allergy prevented him from doing lactose free. I also knew from trying ice cream and still seeing a reaction that Brandon was not outgrowing his allergy. I decided to try to switch the soy milk for goat milk and he accepted it in his shakes. With a continued need to add more enzymes for Brandon they decided his enzymes needed to be changed. I guess in theory Brandon was on his highest dose so there is no more they can do, but he needed two thirds more than the prescribed amount, meaning what he was on wasn’t right for him. I will tell you though the egg white protein turned out to be a great recommendation, but for Brandon didn’t make it the test of time. It was easy to slip in many foods especially those that could easily become pointless to his diet, like macaroni and cheese, always homemade. Now I know if Brandon has a milk allergy how can he have cheese? Here is the answer, whey is the other protein in milk, and it is the liquid part, where lactose is the curd. Whey protein, the liquid, is separated from the curd to make cheese, this is one of the major reasons I know that it’s a whey allergy not lactose. The unfortunate thing with whey is that it has been put into powder form and used in a lot of things. Now I know that it is a rarer allergy, but it made me aware of how difficult any allergy would be with a CF diet. Unfortunately most allergies that are common are a form of protein and or fat. I use many things that aren’t common allergens. There will be some recipes that have allergens in them, but I will offer alternative options for several different allergens too. If you have a CF child with no allergens, then this is still very helpful, and there are recipes for you too.
First things first, let’s understand food in general. Processed foods aren’t good, but they are especially bad for CF’ers. When a processed food is cooked it causes extra mucus to form. We for sure want to stay away from anything that adds to the mucus. Your clinic and nutritionist will agree that processed foods are not the greatest to offer. Dairy, sugar and white flour also can fall into this category. There are great debates going on as to if dairy has mucus in it, I have found so many articles that suggest both ways. It is one of those subjects that could be fought all day long, but no one has the exact answer. Cow’s milk isn’t good for all people, and I personally feel it isn’t good for CF. If your child is experiencing diarrhea, or other severe bowl issues, lots of vomiting, spitting up and upset stomach then it’s possible they have intolerance to milk or other foods in the diet. If you test for allergies, and it comes back fine it’s not always true that it’s ok. Allergies and intolerances are not the same thing. Many people might even go as far to debate that milk is not necessary to have after weaned from the breast and that other countries do not drink cow’s milk like we do. If you are going to have milk in the diet you may be better off with goat’s milk or other alternatives. Homeopathic doctors will eliminate cow’s milk from ones diet as a good place to start for any and all bowl related issues. I feel as in all things too much of anything isn’t always a great thing. Why not have some fun and switch things up, be more open to all different things including a range of different milks. Brandon has had goat’s milk added back in; we now use goat’s milk, soy milk and sometimes rice or almond milk too. I think this helps with not giving him much juice, Brandon still gets a verity.
Good fats to add to foods are walnut, cashews, palm kernel oil, hemp seed nut, and cod liver oil (considering age and nut allergy). My two favorites are hemp seed nut and cod liver oil. I know I have talked about hemp seed nut and the benefits, but it is one of the top staples in Brandon’s diet. Cod liver oil is similar in benefits as fish oil which is commonly known for the omega 3, DHA, and EPA, but it is higher in vitamin A and vitamin D . Cod liver oil is all around good, not just for CF’ers, but all people with many different conditions. I recommend replacing your basic fish oil to cod liver oil. Cooking with oils is really good, but make sure to be extra careful to follow the instructions, many of them have certain temperatures that are too hot for them and also may need to be refrigerated. Try to stay away from lard, butter and vegetable oil to cook with. Get creative or go for olive oil.
Salt is a very important factor to a CF diet, add it where you can. People with CF have a higher amount of salt lost in their system and this is why they taste like salt when sweating, and therefore a result being the sweat test. It makes sense that they need more salt, the hotter the day the more salt. If your child is on hypertonic saline this may no longer be an extreme concern, but by no means should you shy away from it. It is important to be hydrated, which is a hard and confusing subject because too much water is a filler, but not enough water in the heat is going to cause dehydration. When you can add protein to water but just don’t do too much water or juice alone. This brings me to water. Water is a dangerous thing at times. No one really went over this with me, but it always made sense in a common knowledge way for me. I have always been weird about water, and tap water is filled with bacteria and gross stuff, no way have I wanted my children drinking it. A CF child should really steer away from tap water. There are many ways around this and it depends on your budget. You can get water bottles, but that adds up after time. You can get a water cooler which would be good, or you can go to a reverse osmosis (RO) system that filters your tap water straight from your sink. For those of you really watching your pennies you can boil your tap water and use it that way. Anything that isn’t cooked needs to have pure clean water in it. Some of the filtration systems on your sink may not be enough filtration. They are ok, but not good at the tiny bacteria; this is where the RO system works out the best. You can get an RO many different ways, you can rent it, or buy it from a water supplier or from your home improvement store.
As if there isn’t enough to factor in, especially after reading this chapter, there is one more thing I wish to cover. Wheat or Gluten in a CF diet is not always good, those with CF are at a higher risk of having Celiac disease or wheat intolerance. Once I researched this topic further it made sense as to why this would be bad for most people especially with CF. Wheat is really hard to digest, gluten causes a sandpaper affect rubbing down all the villi—the tiny, fingerlike protrusions lining the small intestine. Villi normally allow nutrients from food to be absorbed through the walls of the small intestine into the bloodstream. Without healthy villi, a person becomes malnourished, no matter how much food one eats. Some people may not be affected majorly in this area, but it makes sense for a CF’er to do poorly on a gluten diet because there are already enough issues. When someone’s system is already compromised a small thing easily becomes a big thing. As in all things moderation is important with wheat and CF unless there is a true allergy or intolerance. Being highly sensitive to the effects of food means you need to take more precaution to the food you eat and the effects it may be causing. Not all people with CF are going to have an issue with gluten but they are more susceptible to having issues. The symptoms are so close to typical CF symptoms that the only way to know if it is beneficial is to try cutting it out or minimizing the consumption of it. Brandon does not have celiac or a specific allergy to wheat, but if he has too much his stomach is upset and his bowls become worse. I have learned a balance with him as to how much his body can tolerate.
Good carbohydrates are very important to a CF diet, but know the difference, a good carbohydrate is going to be many fruits and veggies, brown rice, whole grains, beans, nuts. Bad carbohydrates are full of calories, and lack nutritional value. Many carbohydrate products contain sweeteners, preservatives and other unhealthy additives that should be avoided when you can. I know, I know they taste so good, I hear you. The surge in insulin levels from these bad carbohydrates will overwork the pancreas which could lead to things like diabetes and heart disease. White flour, processed foods and many other foods are in the bad carbohydrate family. For fat to better absorb it is best to pair it with a good carbohydrate. If you can get your child to eat a trail mix once they are old enough it will have many essential fat and carbohydrates as well as protein.
When choosing daily supplemental oil you want to go with something high in unsaturated, and monounsaturated fats, polyunsaturated is ok but not the highest number. Olive oil is a great one as well as safflower oil. When reading the labels you will notice almost all oils have the same fat content of 14g, it is the type of fat that you need to pay attention to. Also pay attention to how you plan to use the oil (with heat without heat).I know that it seems that the bad fats and the coconut oil seem to help weight gain better, and quicker which you may notice a quick weight gain when done the wrong way, you will also notice a quick decrease in weight when they are sick. When it comes to weight gain with the good guys you must always remember two things... 1) space it out all day long ( infants 1 tablespoon, children 2 tablespoons, teenagers 3 tablespoons and adults 4 tablespoons) too much at once will just flush through you and do no good. 2) Always pair with a starch to help in the absorption of the fat. With Brandon being younger it is easy to add half an avocado blended down to his milk for the whole day and then add a few sprinkles of baby rice cereal to each cup.
I know this is a lot of information and will be a lot of work, I recommend picking an area you feel most important to you child, like added protein and begin there. Slowly add things in order of importance to your child’s needs. Don’t let it overwhelm you. I started out with a notebook of Brandon’s nutrition, I started in an area and documented what worked and what didn’t. For you it may be easy to make a list in the order of what you want to change in their diet. Write out the things you need to do to accomplish, the first goal, and work on that and then move to the next item. I am a notebook queen and have one for everything, I even have a notebook of all Brandon’s medicines, treatments and so forth, how to and how much, just in case I am not around and someone is unsure of what needs to be done. The point is taking your time and getting to work on the things that matter to you. I fully believe that you will find a lot of success if you really follow many of these recommendations. I am amazed daily at the success in Brandon and others following a healthy life style in this disease. I am mostly proud of the fact that Brandon’s BMI is always good and not from unhealthy fats, therefore when he has been sick it has not dropped his weight other than a few ounces of water weight that is easily gained back. It is very true that muscle fights and fat quits!

A mother’s view

As a mother, I have learned that there is a lot that goes on with raising a child with this disease. I, being a reader and researcher type, looked for any kind of article, self help book, and nutrition books after having Brandon. I was highly frustrated to see that there wasn’t much information on a healthy diet for CF, and nothing that I could find that dealt with any allergies or alternative diets with CF.
Personally, I am a happy person and a fighter, I am the go getter type so it really takes a lot to knock me down. When I am unsure of how I should be feeling, I just try not to feel and hold it in until I can make sense of my feelings. At first, I put my son having CF into that place-- on hold. I just couldn’t put together an emotion for it. As many of you know there is a lot thrown at you and a lot to learn when you first find out. There is also a lot of responsibility, not only am I responsible for my usual wife and mother duties, but I am now a caregiver to my son with a life threatening disease, meaning what I do matters greatly. This is true for sure of non-CF children but not to the same degree. There really is no room for slack, this is a complete lifestyle change in a way that many around you don’t understand. To add to that, you feel like you can’t make connections to feel more normal by befriending other families in the same position because CF’ers are not to be around other CF’ers. It becomes easy to want to lock yourself away from the world. I have chatted with other parents on online support groups all whom have had issues in their own way of coping. I am here to tell you that depression is a big one for many parents, which is ok but should be taken seriously. I was very displeased to hear from some parents that they let the depression take over to the point that they were not doing the treatments that were needed by their children. While I believe that depression and denial are a big reaction that happens to the most of CF parents, it is still your responsibility to care for your child. Pretending that they are fine is not going to make the disease go away, and neglecting the care that is needed may cause unnecessary complications for your child. Seek counseling, or talk to your family practitioner about a way to help you cope and work through this depression. It at no point is recommended or acceptable to self medicate or lash out by neglecting your child’s care. You are allowed to be sad, hurt, cry, be angry, be scared, feel at fault, and grieve the loss of life you thought you were entering. Just do so in a healthy manor.
I was in an odd state of mind and a rather hard state of mind. The best way I could explain it is being in a zombie-like state, no emotion, just going through the motions of what was expected. I felt like when I talked to people I was telling them a story that didn’t feel like was my own. I remember, at the time I had a regular client of mine come in and she asked if I was really this calm about it all, she had been expecting a break down and it never came. I just internalized my stress (which resulted in fibromyalgia). I was on one of my quest to the health food store, Brandon was about 2-3 months old at this point, and I was telling my story with the lady helping me. I started with “my son has Cystic Fibrosis, and I am looking for additional good fat to add to his diet”. She went in to showing me stuff and told me a story of her own, about her granddaughter’s condition and medical battle. In our conversation she asked me if I knew about the owners of the health food store. I told her I knew nothing and have never met them. She told me that the owners have two sons with CF. I felt the lump in my throat and the tears starting to sting my eyes. I did not want to cry, I pleaded with God “not now, please not now”, but it kicked me and hit me hard. She told me that one of the sons was working right now if it would be helpful to talk to him. This 30 year old man was asked to talk to me and I was breaking down trying my best to not look like some crazy woman. I couldn’t seem to control the tears as he told me about his lung transplant. I haven’t even thought that far out. He went on to tell me that he had more lung issues while his brother had more pancreatic issues. I believe he felt uncomfortable with me there blubbering away, he looked at me and said he was going to have his dad come talk to me. I think this helped speaking to a parent other than staring my child’s future in the face. Not that this man was at all a horrible display of the disease, he was actually an inspiring display, but all the same it was hard to swallow. When the father, and owner of the store, came over he told me that ‘care’ (or otherwise being compliant with your medical care) is the most important thing, and should be taken very seriously. He told me the clinic they were going to, which is farther away than ours, was the best in his eyes in what he felt was most important to this fight for his children. When I left the store I cried some more and got it all out for the first time. I got rid of that lost feeling and continued on with strength after that. I would have to say it was like a tiny funeral of what you thought your life was going to be, and then a big celebration of your new forming life in front of you. I have always been a firm believer in God and have had a rather rough life. For many years I feared being a mother, and didn’t want to have kids. I just knew my strength, my ability to love, my giving nature and my need to care for the ones I love; there just was no way I could escape having a special needs child. The only way I knew to escape it was to just not have kids. It made sense until my mid twenties, the clock struck babies and I had the fever. I realized it was time to give up my fear and give in to my faith, either way God knew what I could handle. I married my husband and we got pregnant right away, this was a great blessing to us both because we really wanted to be parents. We had our first child, Elliauna, and we were in love. I wanted another right away so they could be close in age. I remember thinking I wanted a total of five children, but life changed that. The second pregnancy was a lot harsher and I really started to fight with the thought of being pregnant again. I could adopt if I wanted more right? A week after Brandon’s birth we were notified of the possibility of CF and I already knew it, I felt it in my heart since the first moment I looked in his eyes.
I personally went on an emotional roller coaster, filled with a lot of pressure to not mess up. I couldn’t handle if something happened to my son because I wasn’t doing what I needed to do. I was prepared for something to happen and I planned to deal with whatever came when it came. Until then I would do all that I could to prevent it. I frequented the doctor often for myself for many reasons, but on one occasion it was fatigue. My family doctor just looked at me and said, “I was wondering how long it was going to take you.” I was thinking what does he mean, but then he continued with the facts, “Look, you have your husband who has disabilities from the Army, you have a little girl almost turning two, and you have a baby with cystic fibrosis. You are taking care of all these people, you are a saint, no wonder you’re tired.” I guess I never looked at it as anything other than what I do. I figured everyone had something, actually I still figure that. I did get on medication for chronic fatigue and anxiety. This helped me push through the first year until I was able to calm down and get a grip on everything. I needed to be put together for everyone, there was no room for me to collapse or break. I never found myself having a great mental issue. I am an optimist so it never hit me that way, as I said before I had a rough life. I am normally not too shocked, and I am generally prepared for things to be outside the norm. I do have a problem of internalizing things, I take on the ‘I can do it all’ attitude. I want to be supermom and superwife. I tend to run myself down or start having panic attacks, or other things manifest as a product of internalizing my stress. After being diagnosed with fibromyalgia I learned to take breaks. Sometimes it’s going to a coffee shop, library, or even a walk.
In the beginning we were attending a larger church which seemed too big when it came to the nursery and the volunteers. They were nervous and refused to administer enzymes. It’s somewhat understandable, but Brandon wanted a bottle right when the pastor started the sermon. I missed a big part of the sermon and it became rather frustrating. My family was in desperate need to have the support of our church family. We found it hard to connect and ran out of energy to seek out others support. I was heartbroken. This is when I met a good friend of mine who was heartbroken to hear of this, so she recommended her church. I knew we needed a church family, but I was afraid. After a few weeks we finally agreed to check it out and we fell in love with this great little family. What we found was a little piece of true fellowship where everyone loves everyone, and it’s a true family. Everyone took on to learning about Brandon’s needs in the nursery and respected things that could affect his health. This is what my husband and I needed, we were broken, down, and very low in sprits towards other Christians. It was then that we were shown the true beauty of Christian love. I know it’s common to turn your back in anger or confusion to God in times like this, but the truth is that this is when you need him most.
For the fathers involved it’s going to be very different, and you will need to be sensitive to their feeling as well, this is no time to pick a fight. Men tend to shut down and become quite, sometimes it may even seem like they don’t care, but they do. I am not saying let them disappear and leave you to do it all, but a lot of men were never really made to cope in an outward emotional way. The best thing you can do is feed them the knowledge you gain. Let them know how you feel, but don’t point and poke at them to open to you. They will when they are ready. I found out at a certain point that it was hard for my husband to talk about this to me because he knows how much it hurts me. Yes it hurts him too, but he feels like he is the man and he has to keep it together to be that strength. After times of slowly talking about this together, he realized more where I was coming from and it got easier to talk to me. I remember we were watching a TV show that brought CF up very briefly, it was like one of those sneak attacks, we both choked up and I started to cry. My husband took me in his arms and had the first impulse to comfort me and make me feel better. He dropped his own feelings to make sure mine were taken care of. I then understood that he is the ‘Man’, the Alpha male, he leads and protects his pack at all cost. He is driven by this and then it made even more sense, what happens when you feel like you can’t protect your pack? What happens when one of your pack members has a life threatening disease that you can’t control? I assume that you then feel out of control. You feel inadequate and you feel at fault. This is a lot to soak in and deal with, he had to give up that control that he thought he had. He had to be at the mercy of the disease. He had to find out a new way to lead the pack and re route. It’s confusing to know where to re-route when everything is so finicky. It gets frustrating and scary. As women we are programmed to be care givers and we have a completely different road to the same outcome. I believe once both of you get to the end of the emotional road you meet and kind of hash out the new way of things, and then life moves on. You just have to find yourselves here in this new spot.
I kind of think finding out your child has CF is like this: your husband went to the store to get ice cream. You were pumped up for ice cream, you had all your thoughts and excitement dancing in your head and wondered what kind he will show up with. He walks in the door and he has a box of brownie mix in his hands. You were expecting ice cream and were not prepared to read the directions and get out all the things needed for theses brownies. You talk yourself off your favorite comfy chair and you get out your mixing bowl and get to work. You put the time into it although you find yourself feeling let down. On top of it your husband just stands there watching you. He is unsure really how to make brownies, so he is observing for the purpose of learning. You put the brownies in the oven and you wait the time it takes and you pull them out. The aroma hits your nose and you start to perk up. Next thing you know you and your husband are digging into the brownies and they were great, perfect, just what you needed. There is nothing wrong with brownies they just weren’t what you were expecting. But it turned out to be exactly what you wanted. I admit you never expect to have a child with any sort of special needs you get pregnant and plan for that ice cream. When you have brownies instead they end up being better than ice cream. They teach you, and you love them, they are perfect. I would never ever trade my son, he may have cystic fibrosis, but it’s not what has him. He is a normal amazing little guy who makes me laugh and has a smile that lights up the room. He is my son and that is what matters to me.
There are a lot of things going on as a mother or father of a CF child, and it is your job to head up your team to fight. If there are siblings involved you also need to maintain the relationship and support your non CF child/children. I believe this has been the hardest area for me. Elliauna is 20 months older than her brother, and she grew jealous no matter how hard we tried to make her feel special too. Once her communication was a little better, she often expressed that she was sick and needed to go to the doctor. She couldn’t understand that Brandon was sick with a disease, she didn’t know what the word disease was, nor did we feel like it could be fully explained. I tried to let her become a part of Brandon’s treatment, but then she too wanted to have a treatment, and trying to pretend a treatment was not going to fly with her. I tried giving a nebulizer cup for her own, I let her try on the vest when Brandon got his vest. Nothing seemed to change the fact that she wanted to be sick too. She wanted to be special in the same way as her brother, and as much as I tried to explain to her that Brandon was sick, she still didn’t understand. I started having just Elliauna and mommy, or Elliauna and daddy days which were mildly helpful, but only seemed to help in the moment. When Brandon grew out of baby food and started to have texture issues and wouldn’t eat much, she too chose not to eat. If Brandon didn’t have to eat, neither did she. (She of course ate, just not at our wish or when we sat down to dinner). I grew very frustrated, now I was fighting with two kids to eat. This is when it hit me, she was in the stage of wanting to be a “big kid”. She was in the whole potty training stage where this “big kid” theory is in the potty videos and books. I sat down close to Elliauna and told her that Brandon needs to learn how to eat because he is still young, he needs his big sister to teach him how. She took it and ran with it, she liked to be the “big kid” who teaches her brother how to do things. She will now come and try to hold his hand or cuddle with us during treatment time to be there for him. I also asked her to take a big breath, and I demonstrated what a big breath was. She took her big breath feeling accomplished and then I told her, “Bubba can’t take a breath like that, he has to take these medicines to be able to breathe”. We still go over it often, but she gets it now, ‘her Bubba can’t breathe like her and he has to take medicine to eat and do treatments’. She sees how Brandon has to sit there through the treatment and he doesn’t seem to be having fun, this isn’t what she wants now. Now from time to time she claims she is sick or needs medicine or wants to see a doctor, but it’s more of a common communication she hears a lot. Everyone in our house takes medicine and or vitamins and she sees that, so she takes vitamins and she is satisfied. She also gets lip gloss or Chap Stick for her lips, these things make her feel like she has something special that she needs.
Yes, this is going to be trying for a parent of a CF child no matter your condition, everyone will experience it a little different, but all in all it will be a completely different road than first expected. I hope and pray you don’t give up until you find what works for your family and your CF child/children, it is worth every second of it. Find your stress reliever and take time to do it. Although I mentioned previously about some of my favorite places to go and get away to, I also have found for me a good book helps me because I don’t have to go anywhere to read. Find a fun book, not always educational self help books. You are going to go through a lot and it will continue through the rest of your life, so get used to it. You will be living with this as a part of your family forever, so set the tone now and make the rules and life changes. For example, my husband and I loved to have bon fires, it was what we did every week most months of the year as a social thing. We put our daughter to bed and let our friends lay their kids down, or the older kids could stay up and enjoy as well. It was a way we could all get together without needing baby sitters. This had to end, it is unacceptable for Brandon’s health. I know it sounds extreme, but it wasn’t practical when he was an infant and he woke up. It would possibly work for a year or maybe two, of putting him to bed before the fire started, but then it would become unfair to him because he wouldn’t be able to come out and enjoy as he got older. We quit going anywhere with unavoidable smokers- period. Anything that could be harmful to Brandon’s disease we took out of our life. We are lucky now that things are becoming non-smoking in public facilities in most states. The best way to support your child is to change your life too. Now that’s not to say if you have a sitter for your kids that you can’t go somewhere that may be smoky, but shower and change before picking them up or leave them over night. You need to be responsible first, we ended up losing most of our smoker friends over this, but my son is more important. Our true friends that really cared either ended up quitting or would respect the smoking rules of being around our family. Many people didn’t take us serious in the beginning, but no one wants to hurt your child. So with that understanding be firm, but also educate those especially in your family. I am appointed to care for my children and my family. I am not in charge of anyone else or the choices they make. We do miss out on a lot of things that we would like to be a part of, but you can’t expect everyone to completely change how they live, you can only expect them to respect your rules and boundaries.
I will end this chapter with some things that other people said to me that seemed to make me feel better at times. There was a complete stranger who was a mother of a girl with CF, she reached out to me and I asked her a few questions. As we were about to hang up she said, “Just remember this isn’t a death sentence”. I sat there for a minute to soak that in and by golly she was right, not a death sentence at all. You can either fight or wait to die, and these days that may be a very long time. I am a fighter and plan on raising my children to be fighters. The second greatest thing that warmed my heart was from my grandmother, she told me that God chose me to take care of a special child, which in turn makes me rather special too. I guess this is very true, I felt it in my heart way before it ever happened. God made me and prepared me for this. It’s not a burden (which some may view it as), but an honor that God trusts me enough to have a child like mine. God equips us fully for what we have happen in our lives. We all have a purpose and it makes no sense while we are here, but it’s very important. We can spend our lives worrying about all the things we can’t change, or we can chose to enjoy the time we have.

Brandon’s Story

When Brandon was first born he was a beautiful and perfect little boy in every way. I was bound and determined to nurse him longer than the 2 weeks I forced myself to with my first born. Brandon was an eater, it was constant and tiring. I realized after the first few initial hours his appetite didn’t slow down, but instead increased tremendously. I didn’t remember my daughter being that hungry but he was a boy and I figured he just really liked to eat. Every kid is different right? I noticed a lot of other weird things, for instance, every time he ate he most likely had a bowel movement. I thought that it was normal for as much as he was eating, where else would it go? I also noticed that he spit up often, he was spitting up milk and lots of mucus. I was alarmed by the amount of mucus and paged the nurse to ask if that was normal. She said, “I have never seen that before, but if he is putting on weight, I wouldn’t worry”. Another nurse mentioned that it could be something he sucked in the birth canal and he just needed to expel it and he should be fine. I took that answer and went about my hourly feedings with him. Looking back, I am amazed and proud of the fight he put up since day one to not give up on drinking the milk he needed. He managed to gain weight against the odds. I remember I was looking into his eyes and just felt that he was different. I just knew something was going on bigger than I could understand at the time. We finished our stay in the hospital and went home. My father came right away to see his new grandson from out of state. I remember us all sitting, enjoying our time when I received a call from my family doctor’s office. The nurse told me that Brandon had two mutations detected for Cystic Fibrosis on his newborn screen. She told us we needed to come in right away so we could get referred to a specialist to confirm these results. I asked her if that meant he had cystic fibrosis. She told me its hard saying until it is confirmed with special testing. I was crying as everyone sat in horror waiting for me to tell them what just happened. I told them that they think Brandon might have CF. My cousin was born with CF 28 years ago, so I was slightly familiar with it but not as familiar as I should have been. I looked up some things online and noticed all the sites I went to had shared a common statement that stuck out. People with CF have two mutated genes, exactly what the nurse said Brandon had. The following day there was a package on the door step from the State of Indiana which carried the New Born Screening test results. I read it over and over but it read clear as day... Two mutated genes, Delta F508. Now we can all hope, dream and pray for that miracle, but truth of the matter is I knew it then. We had our family doctor appointment and he put it to us bluntly, it is most definite that he has cystic fibrosis. It has to be confirmed with testing but it says it clear as day in the New Born Screening test results, two mutated genes. A person with two mutations HAS cystic fibrosis. There were tears welling up in my husband and my eyes and we were given a moment to be alone. The nurse came and wished us luck in the testing and hoped that a miracle would be on our side. We got our referral and had to wait a week to get into the clinic. This period had to be the worst, nothing like being in limbo. When you do not know what you need to be doing for your child that most likely has this disease, a week seems like an eternity. A week later we went in for his appointment. The CF specialist at the clinic examined him and asked a lot of questions. She was rather shocked to hear I had a relative with CF. It is uncommon for more than one family member to have CF, aside from siblings. The pulmonologist went on to say that it was possible the test could still come back negative, but not to get our hopes up because that would be a miracle in our case, especially with the double Delta F508 mutations already picked up in the New Born Screen. She started him on enzymes and gave us an order for a sweat test. Sure enough, his sweat test came back as positive for having cystic fibrosis.
We came back to the clinic to discuss what to do now that we knew Brandon’s results. Percussion and nebulizer treatments were demonstrated, and aside from Brandon’s hatred for them I felt really confident in what I was to do. We had to figure out a system that Brandon would tolerate, and I had to learn how not to cry while muscling my infant to do what had to be done. I learned the best method was to do all the major meds at night, so I would get him out of bed while he slept. All was well as long as he did not wake up. Any other time he fought me, and we just pushed through. I gained a grand understanding of the importance of doing EVERY treatment; there are no breaks or days off. It’s like brushing your teeth or putting your shoes on, it’s a part of your day, plain and simple. Once you get your method down its time consuming but otherwise rather simple and to the point. Cleaning the nebulizer cups may take a few tries before getting it down, but that too seems to make sense rather early into the game. For those still lost in it, boil, boil, and boil. I did find that for the days when we didn’t have many neb cups, but were on increased treatments for a cold, a good bottle sanitizer worked great. I used the microwaveable kind and it seemed to do a great job, we now have an electric one that also does a great job. I really didn’t feel comfortable with the dishwasher, unless I was 100% sure it got hot enough, and nothing else ran with it. However, there is still the chance of left over gook from the previous load, and the stress of that possibility was too much. Nebulizer cups seemed to clog more often than not when cleaned in the dishwasher, and had to be thrown away before it was time to. Boiling has proven to be the simplest, shortest, and most effective way to clean the nebulizer cups.
I would have to say the hardest thing to understand about cystic fibrosis is nutrition. When we first went to the clinic and received a bottle of enzymes, I was at a major loss, and I definitely would say they scared me. We started with one capsule opened into applesauce before every bottle. We were also advised to add baby cereal to every bottle. Brandon’s CF physician did not feel breast feeding was the best for him so I had to supplement with formula. Since I had to supplement, Brandon ended up preferring the bottle to the breast, so I had to pump. We made the switch to formula and things took a turn for the worst. Brandon was spitting up, throwing up, and had horrible diarrhea, worse than I have ever witnessed. He also had a terrible diaper rash. I knew from my personal experience this meant milk allergy. My mother, my daughter and I all have intolerance to whey (a protein in milk), and I guessed Brandon did too. I learned with my daughter that goat’s milk was the best answer. I tried everything else with her first: soy caused constipation, lactose free still had whey in it, even the hypoallergenic formulas had whey in it. I was at a loss until a friend of mine recommended goat’s milk. I was really hesitant and fought it at first, but after trying everything else, I was willing to try anything. Wouldn’t you know, it was a God send! I was not going to put Brandon through what my daughter went through, so I went straight to goat’s milk. You have to make it special for infants, and I made it extra special for Brandon. You can find out how to make it later in the recipe section in this book.
I will tell you honestly, that Brandon’s CF doctor did not agree with our use of goat’s milk and there were other options she wanted us to try. She asked us to try a special order hypoallergenic formula for severely allergic babies. I really stewed over this, what we were doing worked; Brandon liked it and was gaining weight. I did a little more research on goat’s milk. I already knew from previous research that it is the closest thing to a mother’s milk than any food, and easier to digest on account of more medium chain fatty acids. Goat’s milk is a complete protein and has every essential amino acid needed. It is also higher in vitamin A, calcium and protein than cow’s milk, and lower in fat .I found several articles online in my new search of nutritional benefits for CF’ers, but this statement was easiest to understand: “Goat's milk contains every amino acid that is essential to the body, making it a fully complete protein. In addition, Goat's milk is loaded with fatty acids--almost three times as much as cow's milk--that are known to help fight certain diseases, such as cystic fibrosis, heart disease and many digestive diseases and problems. In addition, half of lactose intolerant people who cannot drink cow's milk can drink goat's milk with no problems. Finally, goat's milk has the added benefit of being hormone-free, unlike some cow's milk. ” We returned to the clinic and told Brandon’s physician that after further research, we had decided to continue with the goat’s milk, it was what was working and we see no point in changing from the goat’s milk unless it was medically necessary. Brandon’s weight was great and his numbers were good as well. We felt a certain amount of respect from the Doctor at this point as parents. It had nothing to do with that fact that we all disagreed on the goat’s milk. It was the fact that we were all fighting this fight for Brandon and committed. It is important as a parent to remember, your child’s physician and you are a team in this fight for his/her life, and you need to be involved, not just on the sideline. Your physician count’s on you as parents to know your child and follow thru with a care plan that you and your physician come up with. That does not mean you do not challenge the status quo, help in the research and make suggestions that may work for your child. Keep in mind, your child’s physician sees extreme cases, and will also challenge you to see where you are as parents in this fight.

I have learned a lot from this whole experience, but now I am going to veer off here for a minute to discuss my personal opinion of doctors and the medical field. I used to hold doctors and hospitals on this pedestal of all knowing practitioners, until I had more experiences with them. Some people will completely discredit doctors if they cannot figure out something immediately, or the person had a bad experience of sorts. Physicians have gone to school to learn the facts, and they have a series of residencies to be sure of the field of medicine they choose. During this time, they treat many patients. They can also call on other practitioners for a second opinion if need be. But at the end of the day they are just doing the best they can. They start out in training mode and as years go on they learn from experience and get better and better at judging and figuring things out. That doesn’t mean they are always going to have the perfect answer or solution to every challenge. I went to school to become a hairstylist (cosmetology school). I had four weeks in class room before I was put on the floor to start working on people’s hair. I was so afraid for my first hair cut, even though I had all the training I needed; I knew I needed more actual time cutting to feel confident of my decisions. As time went on it got easier and seemed to be rather rewarding. Some students were more technical and others were more hands on, yet we all knew the material. Your child’s physician may come across as more technical or hands on, but either way they have studied and know the ‘material’. So to compare a doctor to what I do as a hairstylist, they have the knowledge and ability, they know what works with you and as a general rule they know what’s best. Then there are those few people who come along and throw them for a loop, because God created all people different and unique. There is going to be a difference of opinion at times, that’s ok, and you can expect to disagree at times with your child’s doctor. The key point here is everyone has the best interest of your child in mind. The doctors that specialize in this field are all very passionate and wonderful in their own way. So let them be a part of the team. Fight together, but just remember you’re the captain. Just as you would have an opinion and the final say in what happens to your hair, you have an opinion and final say in what happens to your child.
I always feel like I could be doing more. Even when Brandon is at his best I have to keep researching and reading about everything even remotely related to CF and nutrition in general. I guess it’s like being in a boxing match, you can be on top of your game, and gaining good scores, and it seems like there is no way you could lose. Then, you take a left hook, and it’s lights out. The more you train and learn about moves you may never use, the more you are equipped to fight. CF to me is a fight, I want to know every move possible and learn how to best prevent Brandon and our team from losing the fight. In the beginning Brandon’s weight was always great, he was on a roll, and his lung function was always 100%. At seven months of age Brandon started coughing. Until that time there was never a cough unless it was during a treatment. It wasn’t much of a cough, but we were told any extra coughing aside from his baseline cough was not good. I of course called the clinic as I always do anytime I have the slightest concern, that’s what they are there for. I knew they would tell me to start his action plan of increased treatments, which they did, but I wanted to be sure they knew what was going on. Our physician’s general rule was: after starting the action plan, if he didn’t have any change or if he got worse, to call the office back. I personally only give it 24 hours to get better before I call unless there are prescribed medicines such as antibiotics. If there are antibiotics, I then give it three days. Brandon wasn’t getting worse or better, so I called and they had him in to examine him. The doctor prescribed him a 20 day dose of amoxicillin for what they felt was a sinus infection. His lungs sounded clear and that was our biggest concern. Within two weeks, Brandon developed an odd small red dotted rash across his entire chest and tummy. Brandon seemed to act fussier, but I was unsure of what he was feeling. Was he itchy or sore? I called the clinic and they decided over the phone that he was most likely allergic to the amoxicillin, and they were going to switch him to Cleocin. We were told to restart the 20 day cycle on this new antibiotic. Brandon still kept a little bit of the rash, but they had him in and said it wasn’t concerning them as long as he didn’t show signs of irritation, and he didn’t seem irritated. Once Brandon stopped the antibiotic the rash went away as well as his cough. Two weeks later the cough came back with a bit of a runny nose. I went into the usual routine: call the clinic, start the action plan, but the action plan still didn’t change the cough. Back to the clinic we went, and back on the Cleocin for another 20 days. Allergy testing and an automatic start on Singulair was also added to the action plan. We mimicked this routine again for a third time, and now came up to the fourth time. Brandon’s CF doctor just looked at me and said, “Ok we have been on this same routine for a while now haven’t we?” I answered “Yes”, and she said that she didn’t think it would be pseudomonas because he would be wiped out and showing greater signs of sickness. His lungs still sounded ok, but were beginning to get a little rattle to them. She decided at this point it was wise to just do cultures and check out everything just in case. Wouldn’t you know it, he had cultured pseudomonas. We were all rather shocked, but we went with a different plan and started him on inhaled TOBI, and a newer antibiotic named Cipro. Cipro is a drug that is specifically designed to combat pseudomonas. I was at least relieved that they found out something, and now we had a plan more specific towards what was going on. There was hope that he would finally get through this. After beginning the new medication, I noticed Brandon started coughing a lot more and seemed a tad more run down, which is not like him at all. I called the clinic back and they said to give it a few more days because some people just need to adjust to the TOBI. A few days passed and still no change, so they had Brandon in right away. She concluded that Brandon was not responding to the Cipro. Brandon’s CF doctor examined him and was not happy with what was going on and his lungs sounded worse. She asked me to head straight up to the hospital and said they would be waiting to admit Brandon and start him on intravenous (IV) antibiotics. I did as I was directed calling my husband and my mom on the way to let them know what was going on. I arrived at the hospital and waited for them to get us in. I think I was just in a state of going through the motions; my mom arrived to support me through this process, and of course be there for her grandson. I really didn’t know what was really going on, nothing had been explained and no one seemed to have answers, just orders. Finally one of the CF clinic nurses came down to our room and started to explain that Brandon would be getting an IV form of Tobramycin (TOBI) and continue the inhaled TOBI as well. She said they would increase the half hour CPT (Chest Percussion treatment) to an hour CPT four times a day, as well as continue four times of the Albuterol. She advised me to bring Brandon’s SmartVest from home. I started to realize that this wasn’t going to be an in and out kind of thing. I asked our clinic nurse how long exactly would this stay be? She replied, “Within 14 days, or at least that’s how long the IV needed to given for. Some people get approved to go home early if the doctor feels comfortable with them doing the care at home. At a certain point, Brandon will be given a PICC line (peripherally inserted central catheter) which can be maintained from home, but usually the first hospitalization the doctor will keep you in the full stay.” This was not really what I wanted to hear but whatever is best for Brandon, is what will happen. I called my husband to let him know what was going on and he also didn’t like the news, but it was what it was. I got through the day, after they got Brandon’s IV in and set up for the evening. I had a friend round up Brandon’s SmartVest compressor, vest, and tubing from my house and other things needed and she came up. My mom and sister had been there3 for moral support, and my husband and daughter came up a little later to spend the evening with us.
We made it through the night; Brandon in his oversized hospital crib and I was in my broken down cot, but considering it was the only cot I couldn’t complain. Brandon was checked routinely and had several blood draws to make sure he was getting the right amount of medicine. I had no goat’s milk in the hospital so I told them soy would be fine for now. They told me to just order it with room service from the cafeteria. Next thing I know I had Brandon’s CF doctor and the hospital nutritionist in our room, and they were very unhappy with me. I explained first to his doctor that I was having my husband bring some goat’s milk up and this was what they had for him at the moment. She was fine with this response and left the room. The hospital nutritionist still was displeased about giving him soy milk instead of soy formula. I told her that is what the nurse staff offered me, and I assumed since he was 2 weeks from a year old they just put him on whole milk. Then she lectured me about goat’s milk and I told her my stance was firm on this issue, and that was final. She sighed and gave an expression that suggested disgust and irritation, then off she went and never returned.
Things got a little harder on day two, Brandon was poked and prodded and checked for anything and everything with throat swabs and other tools. Every test came back fine except one, this test checked for how much he was infected by pseudomonas. It turns out, pseudomonas had colonized his lungs, and it was looking bad. Brandon’s CF doctor was rather surprised at how high the number was in comparison to Brandon’s appearance. Brandon was happy and full of energy, he looked like a normal little guy. His oxygen saturation on the pulse oximeter was still reading 100%. There were a few times it read 98-99%, but the nurses said it would have reached 100% if they waited for it, but they were content with 98-99%. The decision was made to monitor Brandon for a few days, and then have a PICC line put in. This was good news, we could finish our care from home. I was very happy to hear this, I had hoped of getting home a week sooner, but I felt proud that the doctor trusted us to do what was needed. By day three, Brandon gained a dislike for nurses and was growing tired of being messed with, as was I. The good news was the medicine was working! The following morning they were going to insert the PICC line and keep an eye on it for 24 hours, and then we would be going home.
Things were moving right along, I held out on feeding Brandon so he could be sedated and inserted with the PICC line. The team came up in the morning; they were all specially trained in PICC lines, which is very different from IV nurses. I stayed in the room while they prepped and when the anesthesiologist arrived I signed consent and was asked to leave. Before I left I explained that Brandon is a fighter and he is very strong, they just kind of laughed like I was cute and said he wouldn’t be able to move once sedated. In most cases I am sure this is true but I don’t think they understood the term ‘fighter’ in the same way that I understood it. A fighter is someone who is strong in many areas and one of them is mental strength. As I waited I had a sick feeling, and I just knew something wasn’t right. After a half hour I saw the PICC nurses leaving the room, there was some talking going on about Brandon. I walked up to them and asked what happened. They looked at me and said, “He’s a fighter alright”, but they certainly weren’t laughing about it then. One of the nurses went further to explain how they had tried to stick him 3 times in one arm, a fourth try in the other arm, and finally the head of the department, which happened to be the overseeing anesthesiologist, took over. He got it in on his first try, but it was Brandon’s fifth try. Brandon somehow managed to jerk his arm while he was sedated when they went to put the PICC line in. I grew angry and pushed through to Brandon’s room. That little boy was a trooper and he was just happy to see me. I looked over the damage and it was awful, his right inner arm looked like hamburger meat, and the other arm had the line in it. He seemed like he was distraught and really didn’t want anyone to mess with him. He wanted his mommy and he wanted to be alone. Once we were alone I cried and calmed Brandon down. I then called my husband to tell him what went on. He was rather upset and did the ‘man thing’ of being silent, radiating heat penetrated through the phone, he was filled with anger and sadness. I went with the, ‘it’s over now and tomorrow we get to come home, so let’s just move on’ attitude. At least they didn’t have to draw blood by sticking him anymore, the blood came directly out of the line now. After several hours it was working fine and they pulled the IV out of his left hand. The poor little guy was bruised everywhere but his right hand. That evening my husband came up with our daughter to bring homemade dinner from the ladies at church. This was the routine every night as we tried to maintain a normal family life. Also, Elliauna loved to come and play with her brother, especially in the big playroom they had in the hospital. Brandon was able to play as long as no other kids were in there. Elliauna was running around and Brandon was crawling after her, while my husband chased after him with his pole holding his IV pumps. We were having a really nice time when my husband noticed something looked weird on Brandon’s PICC line. We flagged down a nurse from the hallway and she took a look at it and agreed that it did not look right. She asked us to go to his room and wait to have someone come up to look at it. The PICC nurses all went home for the night (there are no night shift PICC nurses), so they sent the next thing to one; an IV nurse. She checked it over and said it was unraveling so she rigged it the best she could and told us that they would have someone up in the morning to look at it. So the late night shift began and at one in the morning an IV nurse came in to do a blood draw. I told her that the line was unraveling and that I wasn’t sure it was the best idea to draw from it right now. The IV nurse just looked at me, (she was ancient and cranky) she told me she had to do her job and went right to it. She also turned all the lights on so Brandon was highly irritated, then she left with her blood draw. I ordered up a bottle of Brandon’s goat’s milk from the nurse to soothe him, as I held him I noticed it all seemed a little carefree. Normally there were restraints of some tube in the way tripping me or wrapping me up, but there was none of that. I looked down and there was his tube that should be connected to the PICC line hanging out on the floor. I called the nurse back who sent the same IV nurse back up to the room. This woman came in with this look of ‘OH CRAP’ on her face and just said “I had a feeling”, you think? I tried to warn her but she had to do her job. This night became one of the worst nights of my life, I would have rather of been giving birth with no pain medications than to have to experience this. I was responsible for holding Brandon down, I positioned my body facing him and laid my arm across his chest, I held his hands and did my best to divert his attention. There were two IV nurses, the original one I warned and another older woman, they fumbled around trying to salvage the piece that broke. The line was still in his arm and the connector from the PICC line into the IV tubing was what had unwound and snapped. After a few attempts to fix it they discussed a piece that was supposed to fix it, they dug that out of their cart and tried it. This still didn’t work. One of the ladies thought the piece was too big and ordered up a smaller one, which still didn’t work. At this point everyone was frustrated, Brandon and I were mad and nothing was improving. Then they did something that pushed me over the edge. They pulled the directions out and read them in front of me and then tried to step by step it with these directions. This still didn’t improve the matter and I shot a look over at them with angry tears rolling down my cheeks. It had been two hours since they started, Brandon was hysterical and not going to give up on the fight. I was doing my best not to come unhinged on these women. The woman who caught my look said, “I think this is enough, why don’t we just put an IV in for the night and have your doctor come in, in the morning.” I just nodded not thinking any word that would come out of my mouth would be pleasant. She went to put the IV in the only spot left, the right hand and I saw her start fishing around in his hand for a vein. I guess my look became deadly because at this point she backed it out and said, “Ok, I am not going to try again your doctor can figure out in the morning what she would like to do”, and they left. I called my husband after I had Brandon calmed down, and he was livid. We sort of calmed each other down over the phone and he said he would be up first thing in the morning.
Brandon’s doctor came in early and told me that I needed to withhold food again and that they were going to put a central line in that afternoon. Since he had been off his medicine since one in the morning she was getting nervous and wanted to IV him until the central line was inserted. She called her ‘best’ IV nurse to put another IV in him, although I was not sure where else she was going to get it in. I went to a different room with Brandon and the IV nurse, and she did something very smart that I will use for future reference. She swaddled him in a sheet so he couldn’t fight as bad. She determined there were no options in his arms hands or wrists, so she debated on the foot or the head. The head seemed to be the best thought since he was crawling and may be interested in pulling it from his foot. She got the IV in without a problem and wrapped his head. Brandon and I went back to the room and within an hour his IV pump was beeping. The nurses called the same IV nurse back in. The vein blew on his head and she refused to try a second time. She said there was nowhere else she was confident in sticking and she refuses if she is unsure of getting it. At this point I was angered, frustrated and just plain tired of everyone messing with my boy. I had the doctor called and asked her to come in as soon as possible. Brandon’s doctor was in the room right away and I asked her to explain to me why I should let anything else happen to my son. It had turned into torture and I had my mind made up to refuse further treatment unless she could assure me that it was necessary. She said she wouldn’t exactly call it torture and that unfortunately it had been a little rough for Brandon. I asked her to look at his arms and to tell me again that it had not been torture. She did as I asked and looked at his arms. Now this woman is a rock, I had not seen much display of emotion on her face until that very moment. Her eyes glossed over and they turned to fire, I knew she was very upset and I also knew that he was her patient and she cared about him. I don’t want to say that I hadn’t thought that prior to this experience, but I truly saw to what degree she cared. She continued her conversation with me and explained in full detail as to why Brandon needed to stay on his IV. This was our only time to fight and hopefully we could even get rid of it. Either way he needed the medicine since the pseudomonas had colonized his lungs, if we did not continue treatment he would continue to get worse and it would continue to damage his lungs. I believe I already knew this all in my head, but my heart had to be reasoned with. So I agreed to continue treatment. I also asked the nurse to put us in a larger room, in which they did immediately. I even got a toddler bed for myself! My husband met me prior to the next procedure. The head of the entire department, the same one that inserted the PICC line, was the man putting in the central line in Brandon’s groin. It went smooth and Brandon did excellent, they were even willing to let me still take him home after 24 hours. I was not comfortable after all that happened with going home. Brandon and I eventually came home from the hospital after 14 very long days. He no longer had the pseudomonas colonizing his lung, although we were unable to get rid of them entirely.
Many hard lessons were learned from Brandon’s first hospital stay, but don’t let this scare you. This is one of those rare occurrences, it was the worst case scenario. It still doesn’t even qualify for the worst that could happen, but it wasn’t all smooth either. I learned that as Brandon’s parent, I am ultimately in charge. No one will make me feel like I don’t have a choice or say. My son deserves the best, I don’t care if people like me because I am not there to make friends. I am there to make sure my son gets the best care available. When you choose an unconventional nutrition plan, stick to your guns because you know your child and you know what works. You are not going to get into trouble, they are not your mom or dad. They may label you differently, but at the end of the hospital stay I had everyone’s respect. They were complimenting the very things that at first they didn’t understand. I even had a few nurses come in and ask me about natural things to help their own kids and family members. The staff was delighted by my devotion to my child, I was like a breath of fresh air. I never understood in the beginning, but after two weeks I realized that most parents aren’t active in their child’s care. Many parents use the hospital as a break from the high demands of their children’s conditions. Although parents need breaks, and pampering, this is not one of those times. Your child needs you the most when they are sick. If you have to work or need to give time somewhere else, like special time for another child, they need people with them that they know and who love them as much as possible. If you have minimal family, think creative. Church members that know your child, school teachers, baby sitters, good friends of the family, other clubs or groups you belong to may have people willing to donate their time to be with your child. I view it as this: I need a babysitter if I leave the house, the same applies for the hospital. You should have someone appointed specifically to speak for your child when you are not there, this is not the job of nurses or hospital staff.
The entire time Brandon was in the hospital his oxygen saturations were always good. His weight dropped ever so slightly, but he regained it back before we left the hospital and he kept climbing in weight thereafter. He continues to impress everyone. Brandon did start showing signs of having a texture issue, but it wasn’t bad enough since he was eating and gaining weight.
At 14 months of age Brandon started to walk with the assistance of tables and furniture. At his CF clinic appointment his weight had stayed the same as the previous month, they seemed unhappy about this but didn’t make it a big deal either. They had said they would like to see him gain weight by his next appointment. Shortly after Brandon turned one, he didn’t seem to want to drink the goat’s milk. I gave him soy milk although this was not what Brandon’s doctor or I wanted for him. His CF doctor asked me to try out a formula designed for highly allergic babies. I told her I would try it. They wanted to see him in a month to be able to keep an eye on his weight. At his 15 month appointment at the CF clinic, Brandon had lost a few ounces, which really concerned his doctor. She asked me why I felt he had lost weight, I explained that he was a full blown walker and had cut in 7 teeth this past month. He didn’t seem too interested in food no matter how hard I tried. He especially didn’t like meat and eggs. This was a very unfortunate thing too, considering his milk/whey allergy. It left me without much else to offer him for protein and fat. I was told that he needed to gain weight by his next appointment or they would have to talk about a feeding tube for him. My mouth dropped, I was instantly shocked and upset. They had referred him to the First Steps program, this is a State aided program in Indiana that is an early intervention program to help with all sorts of special needs. Brandon’s special need was his texture issue. On one hand I was excited about this recommendation, but I also felt like it was a slap in the face. I fully agree that I was not too sure how to work with a texture issue, although my mother, my sister, and I all have this same issue. I thought it would be good to know what the professionals do for this. I knew for a boy who was picky with many textures and allergic to whey, he was doing amazing and was beating all odds so far. I researched and found that an average boy at 15 months old should weigh 23 pounds, and an average girl should weigh 22 pounds. Brandon weighed 21 pounds, it was not where I wanted him to be, but it was not enough for me to be ok with giving him a feeding tube. I felt like we needed to exhaust all other options first. I do understand it, I understand that if his weight continued to go down then I would have needed to consider the feeding tube, but not like that and not under those circumstances. I hit it hard when we got home, I pumped up Brandon’s diet. I took Brandon off the formula she asked us to try because he just wasn’t liking it and wouldn’t drink it. I felt like I knew what I was doing and really wanted to finally trust myself to do it. At this point I felt anything was worth a try. I went back to the soy and searched other methods. I cut out all juice and water intake (unless it was a hot day). If he was thirsty he got a protein drink of sorts. The CF clinic had explained previously about wasted calories on juices and too much water. This is when I started to make his protein shakes found in the recipe section.
I was on a mission to prove to myself that what knowledge I had gained about healthy eating could also be applied to a CF diet. I will go into more detail of how I did it in the nutrition section of this book, but I did do it. Brandon was putting on weight, and doing it in a healthy way. We went to our family doctor for Brandon’s 15 month appointment, and discussed what was going on to our family doctor. It had been two weeks since the clinic visit and Brandon weighed 23 pounds. He was looking great according to our family doctor. He told me that all children lose weight when they start to walk because their bodies burn more calories than they are used to. Also that it is common to fluctuate and the weight might be down a little for three to six months. I knew this, at least logically, but it was good to hear. I started to wonder how they could be jumping to such drastic thoughts at the clinic. It was really bothering me, especially that they could give Brandon and I no credit at all and wouldn’t consider his walking to be a factor in weight loss. I understand that if BMI is low then its a problem, it doesn’t matter why. Too often once a child starts to lose weight with this disease it’s the start of a downward spiral, and the clinic wants to make sure their BMI is higher so they can stay healthy. I had worked greatly on keeping it up and being knowledgeable about when he is highly active. I know the importance of a higher BMI, but is there no margin in this disease? What about being human, does that get to happen in this disease?
I believe the answer to that question is yes, it does happen. So why not factor it in? We need to be smart about it of course, I would never allow my child to lose too much weight, but losing a few ounces and being fantastic in every other area is not going to send me to do something so drastic. Yes I will take it serious, and increase his feeding to make up for the higher calories needed, and had I known to factor in their metabolisms shooting up I would have started an increase sooner. This is one of those areas that I wish I had understood better prior to this situation. All of you parents with new walkers on your hands, or any kind of increase in activity or growth, pump up their diet right away. Brandon and I have been through a lot together and I would have to say it has been a rather challenging road. I have learned a lot and figured out what works in his CF body. It makes sense when it’s made simple, and it seems to be what makes Brandon excel in this disease.