Friday, June 17, 2011

making progress!!!

So we are making great progress!!! Evan is still tube fed but has passed a couple of things now. We trialed coconut and he did great. Evan likes the "so delicious" dairy and soy free ice cream! He also passed his corn trial with kix!!! He's loving his buckwheat cereal with just water. We give him a sugar cube every once in a while as a treat lol. My next thing I'm dying to try is a meat of some kind. I'm thinking Hamburg. I'm kind of scared of the poultry since he can't have dairy or eggs. He now weighs 25.8 lbs at 30 months old!!! Yayyyyyy!! I'm excited!

Sunday, March 13, 2011


Oh gosh where do I ever begin...the last time I posted was in August of 2010. I have been so busy.... well the hemp milk was his last reaction before he was admitted into Childrens Hospital in Boston. He weighed only 19.5 lbs and the doctors were concerned. Now just so we all remember-Evan was only eating Neocate Nutra-an oatmeal consistanc type of formula that is very incomplete in nutrition. So-he was admitted to Boston after an upper endoscopy-they said everything looked great-no issues. While he was under they placed and NG tube down his throat. They also realized his potassium was dangerously low so he was sent to the ICU to get his potassium up-we were in that section for 6 days trying to get it up. His potassium level was 1.9...anyway, during that time frame the doctors wanted to try him on some formula that was amino acid based. So they trialed him on a Nestle product which he seemed to do well on for a couple days. We were excited. By the third day on the formula we were sent to the GI floor where they decided that instead of doing a continuous feed through his tube-to do a bolus feed (so he got 8ounces over a 1 hour period. By his second one he had a major "reaction". Classic but one of the worst ones I have seen. By this point-they want to try him on Neocate JR-which he has failed in the past so I say no. Then they decide they want him to try regular food-now mind you at this point he failed every food we trialed, but I figured since we were at the hospital-maybe if he reacted they could figure something out. We decided on bananas. 16 hours after the banana it was deemed a "fail" food. When he threw it up-it looked like he never even digested it at all, which we brought up to the doctors. Finally after hours on google and my experience with my neice I decided to bring up the possibility of gastroparesis. They decided to run the test and figured out his stomach was 80% paralyzed. They placed a G tube in his stomach and we found Neocate One + which worked great. SO-the reason his stomach was mostly paralyzed was because his potassium was so critically low for so long his muscles stopped working. SO he is on erythromicin and zantac through his tube. He definately still has FPIES-the scary thing though is that the foods he had reacted to atleast 6 months before the hospital could have been gastroparesis episodes-they are the same as far as how the reaction looks. I got brave though a couple months ago and Neocate decided it would be a good idea to discontinue the formula that worked so well for him so were forced into trying the JR again-he failed, but on a good note-he does not have gastroparesis because his potassium has been great consistently. He is 24.2 lbs since October and he is now eating sweet potatoes-carrots, sodelicious coconut water based ice cream, apples and squash!!! and he is on an overnight feed with his tube but it seems better- we decided our next trial will be soon with either wheat or corn. So just wanted to update you guys!!!! <3