Sunday, April 6, 2014

Tanners's Food Allergies, Eosinophilic Esophagitis, and Eczema

Before starting Neocate formula.  

This is his face after starting the formula.  

I have had several Doctors appointments and tests with Tanner lately so I am trying to continue documenting what he is going through  for my records.  I am going to start where I left off from this earlier blog last year.
So after we got Tanners eczema cleared up a bit, we have been able to control a lot of the eczema on his body he still has flare ups but not constantly, but his face is still almost always flared.    We took him back to the allergist in April and she did some more testing.  But he wasn't breaking out in hives nearly as often.  So I started to eat white bread and very small amounts of products with wheat in them.  And I let him have some white bread, which he loved at first but after 7-8 small bites refused it and will not touch any form of bread since that time. 

These were his Rast results.
Reference interval being:
less than .10 Ku/L significant level detected
.10-----.34  ku/L.......Clinical relevance undetermined
.35-----.70 ku/L.........Low
.71------3.50 ku/L......Moderate
17.51---or greater.......Very High

Brazil Nut---1.38
Egg White---14.50

The wheat jumped so much higher that she made us both go off of it again.  Then in May I found out that I was pregnant again.   I was still breastfeeding Tanner and trying to eat his diet too so after a few months I decided I better wean him for the new baby and my bodies sake.  I think I weaned him in July.  Prior to July he threw up some of the things he tried to eat but never my breast milk.  After I weaned him he started throwing up multiple times a day.  By November and December he was throwing up constantly and constantly begging for food.   I found some allergy free chocolate chips and let him have a few and he liked them so the next day he found some regular chocolate chips and ate 6-7 of them.  With in 20 minutes he sounded like he had the croup and of course threw up multiple times.   We quickly gave him some antihistamine and watched him after that.  Then he ate a turkey sausage and it happened again.  He threw up so much and was so hoarse and croupy that again we gave him antihistamine and waited with epipen close at hand.  He started to sound hoarse a lot of the time and had another few attackes so we headed back to the allergist.  I told her that I wanted her to test him for foods that he could eat because he was even  throwing up rice and potatoes and the few things that he had lived off in the past.   She again did multiple pin prick testing and Rast tests.  When she asked the nurse if he was actually allergic to any of the things she tested him for the nurse said, "let me just tell you the few that he wasn't allergic too."  So, mostly for my records, here are those results.

Prick tests:  Anything over a 2 is positive. 12-18-13


Banana----0\0  unfortunately  he will not eat bananas.

Potatoe, white---5\10

beef ---7\20
Chicken-- 0\0


control 0\0

Then the Rast tests:  12-18-13

Reference interval being:
less than .10 Ku/L significant level detected
.10-----.34  ku/L.......Clinical relevance undetermined
.35-----.70 ku/L.........Low
.71------3.50 ku/L......Moderate
17.51---or greater.......Very High

Egg white---51.80H

So we were told to feed him turkey, pork, and chicken and take him off of everything he was positive too.   she said he probably has eosinophilic esophagitis  and referred us to a pediatric gastroenterologist.

We got in to see the Gastroenterologist the second week in January.  He told us that that he needed to do an endoscopy to see if his esophagus was swollen and to see if there were histamines in his throat.  So on the 28th we headed in for that.  The tests came back positive for eosinophilic esophagitis which means that his esophogas is swelling from food allergies and food  actually starts to get stuck when swallowing.  Infants and toddlers usually manifest it by throwing up when trying to eat.  Teenagers seem to actually get the food lodge in their throat more often.  I think Tanner had a score of 50, meaning there were that many histomines in a designated area as shown by the biopsy, and they were evenly distributed up and down his esophigas which indicates food allergies and not acid reflux which shows higher levels nearer the stomach.    Both the allergist and the gastroenterologist wanted him to start drinking Neocate, which is the formula they put in feeding tubes.  It is hypoallergenic because they break all of the nutrients down as much as they possibly can be.  That way the body doesn't have an allergic reaction while trying to break down the proteins in a food.  I had tried to give him the formula multiple time since he was 4 months old but he always threw it up immediately.  This time I started adding tiny amounts to the rice milk I was feeding him and eventually was able to switch him off of rice milk, he had developed an allergy to rice, and get him on the formula.  It has been amazing.   He is no longer constantly begging me for food.  He went from throwing up multiple times a day to once or twice in the last 2 months.   His eczema can be controlled now.    The gastroenterologist wants him only on the formula but it is really hard to not let a 2.5 year old not eat any regular food so the allergist and I are letting him eat a few very processed foods if he seems to be doing ok with them.  So he eats chicken,  a few canned fruits or applesauce, and occasionally rice cereals or plain corn chips, etc.   But he is doing soooo much better.   The formula is very expensive but we got our insurance to cover it for at least a few months.    He was so clingy and always wanting held and fed  before the formula but since he started it he isn't always wanting held, he occasionally sleeps 6-7 hours in a night instead of 2-3, and he is happy.  He does want to eat with everyone else though so Feb 28th we decided to have the allergist test him again for foods he can eat instead of ones we think he might be allergic to.  We just did the prick tests.  These were the results.

Banana--0 but still won't eat.
Coconut 10\15
Grape 7\10
Peach 5\10
Pear 0
Rasberry 0
Strawberry  0
Broccoli  5\10
Corn 7\10
Oat 10\15
Rice 5\10
Beef 15\25
Chicken 3\5
Pork 12\15
Turkey 5\10
Apple  0
Orange 3\5

Control 0
Histamine 5\10

The tuna has been helpful but sadly he wont eat strawberries or rasberries unless they are in a Costco smoothie.  ;) Anyway, this blog is mostly just for me so that I can see if his numbers go up or down when he is tested and so I have everything in one spot.  It will be nice when he is old enough to talk so that he can tell me what is going on when he eats stuff, but for now on the neocate formula life is much better.

Family Vacation to San Fransisco

So the BYU bowl game was in San Fransisco this year.  Rob said, how would you like to go to San Fransisco this Christmas?  Then we both just laughed because we are BYU fans but not quite that big of a fan.  But then we looked at each other and decided, why not?  The kids want to see the ocean and we would have fun.  We called Steven and Erika who like to go to games too and they were already planning on it so we headed out on Christmas day and stayed the week.  It was really fun.  Here are a few pictures.