You see, after Aidyn’s treatment for his line infection in July, I became suspicious about possible bacterial overgrowth symptoms. There were increased stools, frothy at times and very bad gas. I didn’t want to put him on more antibiotics. I figured he would have to be cycled on and off once he was started on antibiotics again. We didn’t want that, so I did a little research. I found several natural things that have claimed to help with bacteria, such as grapefruit seed extract (GSE), garlic and coconut oil. The GSE could cause bleeding in those taking Warfarin, a blood thinner. Aidyn isn’t on that, but is on another blood thinner medication, Lovenox. I decided we should stay away from GSE. I tried garlic drops for a couple days and it seemed to help, but I read it may possibly wipe out all the beneficial bacteria, too. I stopped the garlic and started adding coconut oil to Aidyn’s diet. It appeared to stop all overgrowth symptoms. I was very amazed. So, since July, Aidyn has been taking about ¼ to½ teaspoon of coconut oil a day. There has not been one episode of bacterial overgrowth. Since we all like the taste of coconut, I have been baking with it. It’s great in pancakes, cakes, brownies and such. I buy unrefined extra virgin coconut oil. I do use it in regular cooking, but using the refined oil is better tasting since the coconut flavor is mild to none. The dietician and nurse practitioner in Boston are very interested in Aidyn’s use of coconut oil. They have even asked what brand we use and where I buy it.
In September we traveled to Boston for our routine visit. Aidyn gained some weight and maintained it. The team was happy with that since he had been in and out of the hospital in July and August. But since he didn’t gain tremendous weight, the team thought it was best to keep the TPN at 3 nights per week and try for two nights off everything. That was great news. Also, his Elecare concentration went from 27 calories per ounce to 30 calories per ounce. It took him a couple of weeks to adjust. His appetite increased and he started eating more frequently, but taking in less formula volume than before. He always knows what his limits are and I try to respect that.
Aidyn, 18 months old, Alyssa almost nine, Oct. 2010.Aidyn and Alyssa enjoyed Halloween this year. It was fun to dress Aidyn up in his skeleton costume and have him join Alyssa trick-or-treating. Alyssa loved having him there. The year before, he was still infusing daily for about 18 hours, so it wasn’t worth having him experience Halloween. He wouldn’t have enjoyed it anyway. Alyssa scored well, especially because she could have all of Aidyn’s loot, at least all the gluten-free ones.
In November, Aidyn saw an allergist to rule out any potential food problems. I had him tested for about 40 foods. I felt terrible seeing him pricked on his entire back, but I wanted to be sure we covered a lot of what he was being offered and what he would potentially try. It turned out he was intolerant to beef and dairy, and slightly to wheat. He had not been eating any gluten, but lots of dairy and beef. We did a patch test for eggs, wheat, goat’s milk, soy, and corn. Wheat was the only one he had a slight reaction to. Aidyn finally had his immunizations updated with his new pediatrician. He was behind quite a bit since we opted not to have them done this summer. We are very happy with the new pediatrician. He is intrigued by Aidyn’s story and progress, and impressed with his well being.
Barely two months in our new home, we were celebrating Thanksgiving with my dad and family, but the week before was another Boston trip. We stayed with the Mills family, our home away from home. They have been wonderful, allowing us to stay with them for each appointment or hospital stay. They look forward to seeing us each time, as we do them. The clinic appointment revealed Aidyn actually flattened out on the growth curve. He had not gained enough weight to wean any TPN. Despite the small weight gain, the team decided it was time to knock off the remaining nights of hydration. I was a little nervous about this new change, but knew I could just give Aidyn supplemental hydration if needed.
The GI visit back at home gave me mixed feelings. Aidyn had his stools tested for fat malabsorption and blood. Dr. Ursea wanted to figure out why Aidyn did not gain much weight. Test results showed he was not absorbing his entire fat intake and there were microscopic amounts of blood in his stool. There were two concerns: Aidyn could have cystic fibrosis (the cause of malabsorption) and eosinophilic gastroenteritis (a result of more severe food intolerance, leading to malnutrition if not corrected). A sweat test could diagnose cystic fibrosis and an upper endoscopy with a flexible sigmoidoscopy could diagnose eosinophilic gastroenteritis. Since Aidyn had just stopped eaten the offending foods just about a week prior to Dr. Ursea’s appointment we did not want to have invasive procedures done yet. The team in Boston agreed. We waited to be scheduled for the sweat test and discussed the invasive EGD and flexible sigmoidoscopy at the next appointment. In the meantime, Aidyn was prescribed pancreatic enzymes (Creon 6000) to help with digestion, in case his pancreas was indeed having trouble with digestion. It wouldn’t hurt.
It felt like a much happier holiday this time, as Aidyn was healthier and we were more relaxed. There hadn’t been any hospitalizations since August and we all have been making new friends in our new neighborhood. We will soon be posting more recent news...good news!