At the beginning of July we had Sebastian’s check-up at the nutrition clinic where Seb sees many doctors in many departments. The good news was that he didn’t lose any weight since his previous visit, 9 months prior. His body fat % is also at a good amount. The bad news was that he’s not growing like he should be; he’s not gaining enough weight. Also that his muscle index isn’t high enough. It’s very difficult for me to write this but at 6 years old, he’s the size of a 3 or 4 year old. My heart hurts.
Since he got his g-tube in January of 2013 he’s been able to stay at a steady weight with some gain. His body fat index has improved. His shoe size has increased. I’m pretty sure his legs are longer but measuring him at the clinic is difficult since he can’t stand independently and even laying flat on a hard board is challenging. Not to mention that to weigh him I am weighed first and then he sits on my lap, since he also can’t sit independently. (It seems there really should be another way at a hospital that specializes in working with kids with physical disabilities.)
Sebastian has been stronger and healthier. He’s been more hydrated and has more energy. He’s had less seizures (not sure there’s a g-tube correlation there, just stating facts). But he’s not growing enough.
Sebastian has had severe reflux since birth, also known as GERD (gastro-esophagus reflux disorder). He had an endoscopy when he was 1 which found a lot of irritation on his esophagus. He’s been on medication for reflux since birth. Previously it was Zantac and Prevacid. While in Egypt he tried Motilium but it made him so lethargic/spaced out we stopped using it. Over time he’s dropped the Zantac and now only takes Prevacid. It doesn’t eliminate his reflux but hopefully it makes it less painful.
Due to Sebastian’s reflux and mobility issues (being unable to sit up independently as well as the way his muscles work and don’t respond the the messages his brain has for them) he can’t eat a lot of foods. He has both a dairy and soy intolerance because they cause gassiness and/reflux. He also can’t eat beans or lentils. Dairy is high in fat. The latter in protein. Some vegetables cause gas, like broccoli or celery. If Sebastian has gas he doesn’t sleep well. If he doesn’t sleep well he can have a seizure.
Since Sebastian has always been able to eat (soft/puréed foods with grains/pasta) he has foods that he likes and foods that he doesn’t. He loves oatmeal. And of course chocolate and coconut ice cream. Quinoa? Not so much.
When Seb got his g-tube I got us a Blendtech and read a little bit about blended diets and tube feeding. I didn’t have the support or encouragement with the nutritionist where he received his check ups nor at the hospital where he got he gtube. I was afraid to do it, mostly because he was still eating by mouth while simultaneously getting fed Hypo-allergenic formula (which lists corn syrup solids as the first ingredient) mixed with coconut milk via tube. I don’t know how much his tummy can handle while eating and I also need to keep him hydrated and he can only drink small amounts via mouth. So I didn’t go down the blended diet route. But I read up in the forums when I could and it was still in the back of my mind.
Fast forward to today. After Seb’s last nutrition visit I started reading his tube feeding book again, Complete Tubefeeding; specifically the sections on fundoplication (no thank you) and blended diets. I went through every recipe in the book. And I started with two of my own. I made blends that Sebastian could eat. With things like ground sunflower and pumpkin seeds: both high in protein and fat but not sensitive for those with nut allergies as his school is a nut free environment and adding a scoop of peanut butter was a good and quick way for me to add fat and protein that I couldn’t do 5 days a week. I also learned that tahini does the same. Even though I add coconut and olive oils to his meals that I make from our meals, it’s not enough. So now I have a breakfast blend and a lunch blend to ensure high fat and protein and his dinners are like ours.
I’m taking baby steps because every change can cause pain and discomfort because of his reflux. I’ve also read switching fully to a blended diet causes a dip in weight that we cannot afford. I’ve gotten advice about powders with vitamins and proteins that can be added to meals to take the place of his formula. But I’m still searching for a nutritionist with experience with children with disabilities and gtubes who also believes in a healthy, whole food diet. One thing I read in the tubie book is that doctors are afraid to let go of the formula because it clearly states fat and vitamin content. It’s a lot of work to make sure you get everything on your own. But it’s not impossible.
Back to school shopping is tough. I don’t need to buy Seb any new clothes because he hasn’t grown out of last years. And those sizes are 2-3 smaller than his age size. It’s not only heartbreaking, it’s scary and stressful. I’m so thankful the gtube has kept him hydrated and healthy and from losing weight. But he needs more. So much more.
I’m keen for any advice in regards to specialists, products, books, etc. Help me help Sebastian grow!