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.