Here’s a bit of history for you to bring you up to date before I head into the post about our recent visits to the nutritionist and gastro-ped specialist because I didn’t really write about this stuff when it was happening.
When Sebastian came home from the hospital he had an NG tube (a small tube in his nose leading to his stomach which we had to put expressed breast milk in) for ‘eating’. Every day we would try the bottle and whatever he wasn’t able to drink, I had to put through the tube with a small plastic syringe. Then he would vomit because he had such bad reflux. Those were fun times. During this time I would express after I fed him, for the next feed, about every two hours. It’s a blur now, but I remember being awake at night, expressing after getting him back to sleep, and researching about NG tubes. When I googled it, I came up with other feeding tubes, ones connected directly to the stomach and it really scared me. After a week and a half Sebastian decided he didn’t want the NG tube anymore and pulled it out. That night I woke Ali to help and he drank almost the entire bottle, falling asleep towards the end. It was a huge victory for our family and the weight of his eating future lifted a little bit.
We continued with the expressing until he decided to nurse, just as definite as when he decided he no longer wanted the NG tube. He was nearly 4 months old and from there, it was nursing all the way, at 5 months giving up the bottle all together. During his first few months of life, we had to write down every feed, the time, the amount, how much he spit up, which medicines he was taking, everything. We had a nutritionist coming to see us at the flat while we were in London to make sure he was gaining weight. He was. When we left for Egypt, he was nursing regularly, and although he still had reflux, we were able to stop giving him the Gaviscon (thickener for spitting up), which was helpful since he was mostly nursing at that point.
Due to the strict regimen we had from birth, I was always very aware of his intake and outtake. After he received his official diagnosis of cerebral palsy at 3 months, and the research began, I also became aware that kids with CP struggle to both gain weight and keep it on. Sebastian was 6 months old when he started eating rice cereals mixed with breast milk and then I began introducing him to purees. We waited until he was 6 months old because he wasn’t interested in it prior, and he wasn’t sitting up on his own. Before leaving London I had purchased a Beaba BabyCook, planning to make all of his foods myself, with the aid of an organic baby-toddler cookbook a friend had given me back when I was pregnant.
No matter how well Sebastian ate, or enjoyed eating, both of which were true, I was always worried about him gaining enough weight, even though it was never a concern at regular pediatric check-ups. When I look back on photos from before he turned one, I feel ridiculous. He was totally a chubster!
He started eating mixed textured foods when he was 8-10 months after being introduced to individual fruits and veggies one by one. We discovered that many fruits aggravated his reflux and that he was allergic to eggplant, as he broke out in a rash around his mouth after trying that once.
Just before he turned a year old and we went in for some vaccinations with the pediatrician in Cairo, I learned that dairy products can affect your breast milk and cause reflux in babies to worsen. I really wish someone had told me that before! I immediately stopped eating all dairy (including chocolate) and saw a huge difference in Sebastian’s reflux. He was rarely spitting up, although the reflux would often come up, he would swallow it down, with the odd occasion of spitting up if he had eaten too much. At 15 months Sebastian was able to start chewing rice, couscous and other small grains, as well as pulsed pastas, mixed in with pureed veggies and chicken/fish. No red meats. He was also still breast feeding.
Although Sebastian was eating more foods and textures, and still enjoying his meals, they were taking longer to eat because there was more work involved in chewing and swallowing them. Also, he would often get air bubbles from swallowing air while eating, or drinking, and we would have to stop to help him burp, sometimes it would get very painful and eating would turn into an hour long affair. When the bubbles would get really bad and try to dissuade him from finishing his food, we even got a mini dvd player involved. Episodes of The Wiggles (courtesy of Granny and Pop in Australia) got him through his meals. We discovered his first dvd crush during the 40 HBOT dives, Summer 2009. This became part of our routine for then next 6 months or so as we worked through this new phase. It was also likely he wasn’t chewing his food enough so there was some pain involved in any reflux as well as air bubbles.
During the same summer we also visited a gastro-ped and ENT specialist. Sebastian underwent the traumatic barium swallow test and then a couple weeks later had an endoscopy, which resulted in minor surgery to his epiglottis to help with his stridor. While doing this simple procedure, the doctor noticed Sebastian’s esophagus was red, damaged from his reflux, and prescribed a second reflex medicine. He started taking Prevacid on top of Zantac. The barium swallow test had gone fine, no signs of aspiration or difficulty swallowing the thick, chalky barium solution. Score: 1-1
We went to Australia for Christmas 2009 to visit Ali’s family and friends, and at this time we also visited the Royal Children’s Hospital for a check up. While there we saw a CP specialist, had an EEG, met with a neurologist and had a short visit with a nutritionist. We stocked up in reflux medicine as well as some other supplements and medicines. During the discussion with the nutritionist, she gave me some tips on how to add more fats to Sebastian’s diet, but said that the amount of food he was eating sounded proportionate. We were given something called Poly-Jule to add to his food to help him gain weight if needed. When we got back to Cairo, I didn’t add the Poly-Jule to his food, it wasn’t a concern with the pediatrician, so we didn’t do it. Instead, I added olive oil and wheat germ to his meals, as well as avocados when in season. I also added more meals/snacks into his regimen, especially as he was starting to nurse less. Unfortunately, Sebastian can’t have dairy because it affects his reflux and causes gas, and we all know that dairy is high in fat content, but we did add soy milk to his daily intake.
Sometime in the early Spring, Sebastian lost the need for a dvd accompaniment during meal times and was able to get through a meal without having an awful gas bubble. It was still taking him about 30-45 minutes to eat. One of my concerns was also that the amount of calories he was using to eat his food, because it took so long, was not balancing out with the amount of calories he was taking in.
As Sebastian continued to grow, he wasn’t really gaining weight in proportion to his height. He stayed at a fairly steady weight, unless he got sick and then he would lose a couple pounds and we’d have to work to gain them back. Other CP moms assured me that their kiddos struggled to gain weight too, and that a supplement like Poly-Jule would help. We planned to start it in the Spring, then it got left behind when we left Egypt in May.
Sebastian had the stomach flu after the flight from Cairo, so he lost some weight and had to have an IV a week before his birthday party in Michigan. The rest of the summer was consumed by therapies and seizures and a couple visits to the ER for different reasons so gaining weight was not the priority. Although I was adding fat where I could, and started including coconut oil in all of his meals, very generous proportions of it.
Sebastian has always been healthy. He’s had one bout of stomach flu, pneumonia once, a couple ear infections which were caused from preceding colds, and that’s about it. Although since living in Toronto, he’s had coughs and colds more frequently than when we lived in Cairo. Twice he has been so sick that he needed an IV to rehydrate. Both of these times, he lost a couple pounds and then had to regain them, which he does fairly quickly and then he stays at that weight.The same weight he was when he turned one.
And here we are today. Living in Toronto. Going to feeding therapy to learn how to lateralize his tongue and close his lips when eating. Meeting specialist after specialist after our name has been on the waiting list for 6 months. And all of these experts think they know exactly what my son needs after meeting him for ten minutes and me giving them the short version of this post. Then placing him into the categories they’ve read in his doctors notes. Full term. Traumatic Birth. Dystonic Cerebral Palsy. Seizure Disorder. Cannot do this or that. Can do this. Can do that.
I’m trying to find a way to end this post. But it doesn’t end. It keeps going. This is the ‘brief’ history, for what we are doing now, in the present, where it’s always the best place to be. Stay tuned.