Advocacy, Cerebral Palsy, Food, G-Tube, Health, Love, Our Son, Parenthood, Sebastian's Achievements, Seizures, Toronto

Blended.

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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!

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14 thoughts on “Blended.”

  1. As a parent who went through having a child diagnosed as “failure to thrive” and trying all kinds of high-fat diets, a g-tube and even growth hormone (6 shots a week given at home) — and specialists that wanted me to document every morsel that passed his mouth — I wish I could go back and see that physical growth is overrated and a child can be small and still healthy. There is too much emphasis on “growth” in our culture (big is better) and some kids with disabilities and other conditions have different growth patterns and comparing them to a typical child’s growth is counterproductive. In some ways I blame the professionals for putting so much emphasis on it and freaking parents out and making parents feel like failures when their kids aren’t growing at typical rates. I wish I could go back and let go of all of that angst now that my son is fully grown (and still tiny) because it was wasted energy. xo

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    1. Thanks for this insight Louise. I appreciate your perspective so much. You are right on many levels. I’m ok with Seb being small and healthy but the not growing part is very scary to me. I feel like I am seeing a difference in the month since I’ve started the new blends and making sure higher fat protein is always on the menu. I’m a vegetarian and I don’t even know how to cook red meat so I’m relying on my husband for help in this area because I know Seb needs more than chicken and fish.

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  2. Hi i too have the same issue with my little CP man growing he’s a twin too so i have a direct comparison to how he ‘should’ be. Ray’s 2years and 8months and only 9.5 kilos his brother is over 15 kilos. i have been feeding him a blended diet for just over a year now through his G-tube. i dont give him dairy or soy or beans lentils etc due to tolerance, reflux and gas. i too give coconut oil, olive oil, seeds, and high cal food like organic beef, chicken, sweet potato, avocado, hemp seeds are great too. Although some say veggie diet can be better for children like ours as meat can be constipating. I have found the blenderized food for tubies facebook group really informative, knowledgeable and supportive if you join and post your concerns you will get some great advice. Sounds like you are already doing a great job keep up the good work. Professionals put so much pressure on our children to gain weight its about quality of life too why be hooked up to a feeding pump 24-7 just to put on a few pounds? take care Gina

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    1. Thanks so much for your input Gina! I agree re quality of life. I’ve thought about a night feed but it’s the only time his body moves freely. And he’s a good sleeper and I don’t want to mess with that and cause seizures. And no way do I want him hooked up all day. He’s 6! He should be in his walker, riding his bike, anything he can do out of his chair. I’ve gotten hemp oil to try and seeds. I didn’t know red meat can constipate. We do 2 kinds of fibers daily to help with that. It’s hard when there are so many variables, isn’t it?! I’ve joined a blended diet group on Facebook and recently a page with recipes. I’m hoping to get insight into how much by mouth while being fed by tube. I’ve gotten some feedback and it sounds like everything we do: trial and error. Thanks again.

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  3. Dear Kara, sorry it sounds so exhausting for you trying to always do the best for Seb and not having the right supports from the nutrition team. Is such a tough balance of trying to get enough calories in and encouraging using his walker and playing etc. there never seems to be enough hours in the day either! Sending you much love x Bron

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  4. I’m wondering if you’ve tried Erythromycin for gastric emptying. Q’s GI doc put him on it two years ago and he’s jumped curves on the growth chart since then. Not that I’m looking for ways to see him grow huge, or anything. He’s likely to be smaller than the rest of our family because of the neuro differences, and that’s fine, but he needed to grow enough to be strong for school and therapies – to be able to navigate his own life. We did a gastric emptying study that showed he was processing only 20% of what he was eating within the first hour – instead of the 50% he should have been. So he was “full” all the time, which leads to reflux, makes it hard to gain weight (nutrients are absorbed mostly after they leave the stomach), and he wasn’t *really* hungry. Anyway, I wasn’t excited to add anothe med, especially one which requires refrigeration, but it’s been awesome. He gained 2 kilos (according to the office, last week), in the last year. 🙂

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    1. Thanks so much Carrie. I will discuss with the nutritionist or pediatrician at our next appointment. I’ve never heard if this. Very helpful info.

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  5. We dealt with this at a different level, and I have a sense of how torturous it can feel. Wanting to nurture our kids is such a primal instinct, and when they are slow to grow it can eat parents up alive. Kara, would it be possible for you to get a consult with a pediatric nutritionist at another hospital or center who specializes in kids with CP? You might even be able to do a phone consult with one outside of Canada. As I’m sure you’ve found, different experts bring different tactics and tricks to the table and you might pick up some new ones. I don’t know of any but I can ask on my Facebook page if you want, and also share a link to this to see if more parents have ideas. Let me know.

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    1. Thanks Ellen. I’d be happy for you to share the post in hopes to get more feedback; whether recommendations with diets or specialists. And though if like someone locally long term, I’m not opposed to a phone consult with so one outside of Canada. Thanks for your input and support.

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    2. Hi Ellen. I think you responded to my post just before we left on our big family camp trip. Thank you. I think I will try to consult with someone else elsewhere while also searching for someone more local. Of course I’m happy for you to share and ask in your fb page. Anything helps. I appreciate your support.

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  6. What about a bone broth? My friend’s daughter (has DS and was adopted from Ukraine before she had heart surgery) was very very ill when she came home and they used bone broth to fatten her up. I wasn’t sure if you wanted to increase protein or keep it the same… Hmmm… I wish I knew more about nutrition.

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