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. 

Sunday, March 23, 2014

Sports With the Kids Are So Fun.

Hyrum and Caleb got talked into, ok I got talked into, letting Hyrum and Caleb do wrestling this year.  They loved it.  They would look at me like, can I really attach this kid and throw him to the mat?  The coach said he had almost never seen two kids that seemed to be having so much fun and winning so much even though they were clueless before their first match. 

Hyrum loves soccer too.  He loves any sport I will let him play.

Caleb didn't have a clue what he was doing but he would take boys down right and left.  He happened to wrestle a kid that really knew what he was doing and kept pinning Caleb but each time he would jump up, smile, growl and yell,  "attach!!!."  (I don't think I am going to have the boys wrestle anymore because we are doing a bit too much and I don't like all of the weight issues that come with wrestling but it was sure fun to watch).

Kaitlyn played her first year of basketball this year.  She had no idea what she was doing.   When they started the game and all circled around the ball for the jump she stood out of the circle and just watched.  After the other team made their first basket she picked up the ball and everyone else ran down the court but she just stood there with the ball and then started to dribble down court until the ref told her she had to take the ball out of  bounds and throw it in to a teammate.  Anyway, by the end of the season she was quite good at defense but she didn't like getting the ball and was even kind of scared of it so the last game of the season I told her that I would give her a dollar for every rebound she got and every basket she tried to make.   By the end of the game I owed her 24 dollars.   I even told her just trying to shoot didn't count anymore she had to make it and the very next shot went in.  The other team had to hold her out of the key and kept fouling her to try to keep her away from the ball.   The other coach even came up to her and said they couldn't get any rebounds thanks to her.   It was really fun to watch and now she wants to play next year.  I am not sure I can afford it though.  ;)

Tanner turned 2 on November 30th which just happens to be the same day he was born and the same day he turned one on.  :)   I am a little late on his birthday post.  But here are some pictures.

Tanner with Cassandra

Tanner you are extremely head strong and determined.    You already see and do things that most Moms would never let their 2 year old child do but you insist on doing them anyway...running the microwave, browning hamburger, vacuuming the floor, pouring your own milk, etc.  For a few nights in a row you woke up and wanted to go down stairs and play in the middle of the night.  The second or third night of fighting you and finally letting you win I knew that I couldn't allow it anymore.  I held you and insisted you go back to bed or snuggle with me.  After about an hour and a half of screaming I was beside myself wondering how I was going to handle you.  Suddenly I had the most peaceful feeling that your determination to do is what would allow you to have a normal productive life despite the limitations severe allergies, eczema, etc. would put on some people.  I now love your determination and love seeing all that you accomplish.  I love you!!!!!

Sunday, January 5, 2014

Woah, Jenny finally got Married!! ;)

Jenny got married on Oct. 12, 2014 to Guy Foster.  Welcome to the family Guy.

Kaitlyn's Birthday!!

Every year we have had a birthday party for Kait.  This year I just never got around to planning one.  I was pregnant and a bit uneasy about the pregnancy.  I sat down with Kait and said,  "would it be ok if we don't do a party this year? Maybe you and I can just go do something fun instead."   I can tell she is getting older because she was ok with that.  She still wanted one but understood that I was tired and busy.  Of course, she said, " that's ok Mom.   Maybe you and I should just go on a cruise or to Hawaii or something instead."
(We ended up delivering a still born girl on our birthday.  She got to spend the entire day at Grandma's and have a small party with a few cousins and I got to lay in bed allllll day and read.  So it turned out ok for both of us).

Kait I love you.  You are growing up and maturing.  You don't complain about cleaning nearly as much.  You are becoming a great helper with Tanner.  I love that I have always been able to explain a situation to you and you except it for what it is.  I love you!