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!

March 2011 FINALLY AN UPDATE

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

Failed Hemp Milk-getting annoyed

So, I decided to trial Evan on hemp milk. I made it myself from hulled hemp seeds to ensure there were no perservatives or anything else. I had been giving him the seeds mixed in with the Neocate Nutra. He did fine for 8 days. Then he wasnt too interested in them, so I stopped for 3 days. Today I made the hempmilk and he drank a little. 2 hours later he projectile vomited while I was holding him. It was like the peaches though. He played in between vomiting and only did about 4 times. This is so frustrating. I would have thought hemp of all things would have been ok.....dont know what to trial next...

Another Reaction

Well, Evan decided to try and grab a cup of milk off the counter and pulled it down, it spilled on him. I didnt think any got into his mouth, but a drop or 2 must have after I wiped his mouth out. I called out of work thinking he probably would not react. WRONG, he started being emotionless after 2 hours of the incident. Within 20 minutes of his pale emotionless face he projectile vomited 3 times and just looked like crap. His lips were losing color, he was lethargic and was very uncomfortable. I feel so alone sometimes. The sucky thing is he is only eating Neocate Nutra and water-that is all, he has reacted to everything. Its tough, i dont even know how to go about toothpaste...??? I want to try hempmilk but am afraid. My goal is to try it Monday morning. I figured I should give it time between reactions, he is only 20.6 lbs at 20 months almost...So far he has failed: dairy, oats, soy, carrots, peaches, pears, apples, bananas, Neocate Junior. I am at a loss here ladies, i need help...words of advice? I just dont know anymore...

FAILED PEACHES

Well, I decided that carrots, breastmilk and neocate nutra were not enough for Evan, so I tried peaches yesterday. He seemed fine ...til today. This morning at 8:30 am I gave him 1 baby spoon of peaches and he failed at 5:30 pm...8 hours later?! yes 8 hours later...I always though, "wow, that must be so hard on people that have to deal with waiting that long, cuz Evan is usually 2-4 hours..." Well I understand now. I am annoyed more than anything but I do have faith that he will be able to thrive more than he is... he is 19 lbs and is almost 17 months old. I have been debating trying the hemp milk, but am unsure about it...I think next will be buckwheat cereal. Anyway his reaction this time was a little different...he nursed like he always does before a reaction then right after , he projectile vomited EVERYWHERE and kept on throwing up...then was a little lethargic, but I waited...and he started playing and would throw up about every 20 minutes to a half hour, but remained in a playful mood after the first hour of the reaction, but it lasted for 4 hours this time which was the longest but most mild... I will update soon on what I decide to do...

xoxo
Jen

Well, its been awhile since I have blogged and I thought I would share some things. Evan is 15 months old and is still nursing and on Neocate Nutra twice a day and drinks some water out of his sippy cup. He is addicted to nursing....which is nice because I love the bond, BUT I will be happy when he is on other things. I am in the middle of trialing carrots with him and he does ok on the occasional Neocate One+. But I am not consistent with the formula because he wont take a bottle and drinks only from a sippy cup, so he doesn't drink enough. Sometimes I am so frustrated. He is 15 months and is the size of a freakin 9 month old, 18.6 lbs. I feel so stuck and alone sometimes in this and I feel so fortunate that I atleast have this and the support of you ladies. I want to try new things with him but I think he has aversions to food. He gags a lot and is on stage 1. But every day I give him a little more carrots and he seems okay with that.

Evan's GI appointment

Well, I took Evan today to his GI doctor and he thinks Evan has EE and/or FPIES. His symptoms are all FPIES, I looked into EE and it does not seem likely at all... He is still only on breastmilk and Neocate Nutra. His GI doctor said if he TRULY had FPIES he would not be able to tolerate breastmilk....NOT TRUE AT ALL...I need to just put all my faith in God. I know whatever the case is we will be okay. So next I need to schedule an upper GI and biopsy...I guess we will see how this goes.