Wednesday, February 16, 2011

Update Part 2, 2010

The second half of August finally greeted us with some relief from prior hospitalizations and antibiotic rituals at home. Surprisingly, Aidyn did not end up with bacterial overgrowth as he did after his bout with antibiotics back in April. I can only credit adding coconut oil to his diet.

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.

It was a long day at clinic.
Boston is beautiful in the Fall.
Right after returning from our September visit in Boston, we moved. Finally, we headed north of Phoenix to ease Joseph’s commute. He went from driving 1 – 1 ½ hours each way (6 days a week) to 15 minutes each way. We love our new neighborhood and Alyssa loves her new school. The transition was great for all. Alyssa and Aidyn go to the park around the corner almost daily and Joseph can spend more time at home with us, not to mention if Aidyn funs a fever, Joseph can be home quickly so we can organize going to the hospital (knock on wood, he hasn’t been there since summer). We were sad to say goodbye to Roxanne, Aidyn's respite nurse, who was like a second grandmother to Aidyn. Luckily, Aidyn took to Stella, his new nurse, very well. She helps me with CVL dressing changes and general work that revolves around Aidyn (washing bottles, preparing formula, laundry, and of course, Aidyn, himself). I really utilize the time to catch up on much needed housework and grocery errands. I still haven’t had the time to volunteer at Alyssa’s school, as I used to do before Aidyn came along. I was hoping the break from Aidyn’s cares would allow me that and maybe it will soon.

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.

Waiting for our cab to go to Children's Hospital Boston.

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.

Lovin' the tortilla chips.

It's like playing "Where's Waldo?"
December was super busy, as anyone might imagine. Aidyn started the enzymes and seemed to be eating and drinking a whole lot more, but not before having some gassy symptoms, distended stomach and maybe constipation (how can you get constipated when your poop is like diarrhea most of the time?). I think the introduction of the enzymes caused a slight side effect. It has since resolved. Anyhow, I was sure he gained weight, but a visit to Dr. Ursea’s monthly check up showed he gained hardly any. He was healthy and we just kept the TPN the same and gave the enzymes a chance to start working.

Three generations.
Christmas was a whole new ball game this time. Santa was very generous to Aidyn and Alyssa, and so were a few folks who made sure they would have a great Christmas. We appreciated the extra gifts from friends and family. Joseph’s parents came for a visit Christmas day and my family came up for New Years Eve.

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!


  1. What kind of coconut oil did you use? My little girl is struggling with bacteria overgrowth too and I have also found research that suggests this may help. Is it continuing to help your sweet little boy?

  2. Your story sounds so similar to ours. Our little one also contracted a severe case of NEC that moved extremely rapidly (perfed in less than 6 hours from in 9). She has about 20% of her small & 20% of large intestines left and is still in the hospital at almost 6 months of age (she got NEC at about 3 weeks of age). It's a long, hard road, but reading your story encourages us. Thank you!


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