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This is a blog for my son. He has a rare auto immune disease that causes his body to attack food like it would a virus making it impossible for him to eat most any foods with out getting very very sick. This is a record of our ups and downs, doctor visits and procedures. Our trial and error life of finding out what foods are safe for our son to eat and eliminating the ones that are not from his life.

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Sunday, January 29, 2012

Allergy Test

On Thursday we had an allergy skin prick test done. They tested him for 22 foods.
Green Peas

Out of all 22 he only reacted to 5! Wheat, Corn, Milk, Egg, and Beef. They sent his blood out to a lab to test these foods another way just to be sure because apparently the skin prick test is not all that accurate or reliable on a child John's age. Either way we now have 5 foods that are defiantly a NO GO. We will know more next week on the other foods.

We see the GI Specialist on the 1st and he will schedule another scope. IF that comes back clear we can start on food trials based on his allergy test results.
We introduced Neocate Nutra to his diet on Thursday. He really enjoyed it and kept it down the first day. Then on Friday he started to show symptoms again (ie; gagging, spitting up) So we've not done that Nutra since Friday afternoon. This stuff is supposed to be hypoallergenic meaning that all the proteins that cause the allergic reaction have already been processed out so while it is made with corn starch and corn syrup and John is allergic to corn he should NOT react to this product because his body does not need to process the offending protein. There are rare cases of children being allergic to the WHOLE food and reacting to Neocate brand products like Nutra and it is possible that this is what we are dealing with. Or it could be that we have something else going on with John that has yet to be diagnosed. All of this will be addressed with his GI specialist and Nutritionalist on Wednesday.
As of his last weigh in, on Thursday, he was at 17 lbs 15oz! Growing at 6 grams per day which is the average rate of growth for kids his age!! It's not the catch up growth we need but it is a HUGE step in the right direction!
We are all coming down with colds in the Hemme Haven right now and I hope that this wont set us back any with John's progress but today he has only eaten 12 ounces and every single ounce has been a battle along with gagging and spitting up.
I will post again after our appointment on Wednesday.

Friday, January 20, 2012

Baby Steps

Sorry it's been a while since I updated. My Dad passed away last week so things were kind of crazy for a little bit. It's a good thing that traveling doesn't disrupt John's schedule too much because he is so used to it. It was a bitter sweet time at home this trip. My Dad had been sick for 6 months and was miserable so it was a relief when he went but there is so much we will all miss about him. It was sweet seeing my son play with his cousins and I got some great pictures.

After talking to John's nutritionalist and John's little blip of weight loss she decided that we should try to increase his calorie intake. So we started mixing his bottles differently. When you mix his formula by the can directions it has 1 calorie per milliliter. We were instructed to start mixing it to 1.5 cal/mil. We also started the steroids on the 7th of this month as well as increased John's prevacid.
We had to cut back on the higher calorie bottles to only two a day because John's little body was having a hard time adjusting and it was causing him to throw up. We were doing really well on intake as well, John went up to averaging about 23 ounces a day. He even took over 30 one day!!! The steroids seemed to be working, his symptoms were calming down and the prevacid seemed to be helping tone down the random reflux episodes at night. He even gained back the weight he lost, plus a little. So as of January 11 John weighed 17.3 lbs.
Once he and Doug met me in Memphis however things started to change. John started gagging and throwing up again. So we cut out the higher calorie bottles. He is still eating very well, averaging 23-25 oz a day.
Doug ended up taking him to meet the occupational therapist so what I got from him is that John is doing well in his development but he does have 'severe feeding impairments due to Eosinophilic Esophagitis'.  How do you teach a kid to eat foods he cant have? He will have to have therapy to correct this issue as soon as we can find some acceptable foods for him to learn to eat. We had to move our allergy appointment back to the 25th  from the 18th. They should be able to tell us if there are any foods that are safe to try. Then we can start the food trials. I will go into food trials later, thats a whole other blog.
I feel like every time one of his Doctors changes something he gets better for a while and then drops off again. Even though it feels like we aren't going anywhere we are making slow progress!
Only one more full day of steroids then our goals are 24 oz a day with at least 8 of them being 1.5 cal/mil, seeing the allergist, and finding at least one fruit, one vegetable, and one finger food that John can eat.
I think we've dodged the feeding tube for now, as long as John keeps taking in this much formula and can continue to increase we should be okay. We will be tracking John's head circumference along with his weight now to make sure he is growing properly.
While we were in Memphis John started walking while only holding one hand which is a big step in the right direction! He's only a couple of months behind on these developmental milestones.
We see the nutritionalist next week for a weigh in so I will update then!

Saturday, January 7, 2012

New Game Plan

We talked to the nutitionalist yesterday and found out that John has lost a little bit of weight. She decided to have us increase the calories in his formula by mixing it differently. Last night, after his third bottle made this way he threw up quite a bit. No good! So apparently his body is going to take a little time to adjust to the higher caloric content. So now we will be upping the calories for his first two bottles of the day and then going back down to the normal calorie count for the rest of the day.
Today went much better than yesterday and he has kept everything down.
We also started a steroid today to try to get him to stop gagging and coughing after eating. That has been a special challenge of its own because it tastes nasty, we have to clean out his mouth after wards with out him swallowing any thing, and he can't eat for at least two hours after taking it. It has to stay in his esophagus as long as possible to absorb.
Because of his recent weight loss we are giving the steroids some time to work along with the higher calorie formula, if that doesn't show some significant improvement our next step is a short stay in the hospital for observation and possibly a feeding tube.
We are already seeing a slight delay developmentally because of his lack of nutrition.
We have an appointment on Wednesday morning with an Occupational Therapist to see just how far behind he is, and so they can watch him eat. What they say will also influence when/if we do the feeding tube.
John took 23 ounces again today!! That's three days in a row that he's been 1 ounce away from his goal!

Eosinophilic Esophagistis. English Translation Please!?!

Eosinophils, a type of white blood cell, are an important part of the immune system, helping us fight off certain types of infections, such as parasites. -www.apfed.org

Eosinphilic Esophagitus is a disease where these eosinophils collect in the esophagus. There are other eosinophilic disorders where they collect in other parts of the body.

From what I understand, John's body treats food as an infection or a parasite and attacks it. If left untreated these Eosinophils can cause extensive damage to the esophagus.
Treatment for EoE consists of a few different methods. One being an elimination diet, by removing the top 8 allergens. They are dairy, soy, wheat, seafood, peanuts, tree nuts, shell fish, eggs, and beef. The second step if there are still symptoms is an elemental diet. This approach requires an amino-acid based formula in place of food. If there are still symptoms on a solely elemental diet then come the steroids. 
A lot of kids with EoE end up with feeding tubes due to damage done by the eosinphils, oral aversions, or for whatever reason they are just not getting enough nutrition from drinking the formula alone.
As of now there is no known cure for EoE.

We started out with the elimination diet with John. It was pretty easy considering his diet consisted of Soy formula, because we already knew he couldnt tolerate milk, rice cereal, oatmeal, and 9 of the 1st and 2nd stage baby foods (carrots, peas, green beans, sweet potatoes, apples, pears, bananas, peaches, and prunes). We switched him to the Amino-Acid based formula, took out the rice cereal which we were using to thicken his bottles to try to help it stay down, took out the oatmeal, but kept him on all the baby foods.
So far we are that sure that John is allergic to milk, soy, wheat, and rice. 
Around Christmas we decided to eliminate all the baby foods as well because he was still having symptoms but we were unable to pinpoint which of the 9 foods were causing a reaction.
John also has developed an oral aversion. He can not eat anything that is not smooth in consistency. I discovered this around 8 months. Every time we tried to introduce a stage 3 food he would gag and throw it up.
Even after two weeks of a solely elemental diet we are still seeing John gag, cough and spit up. 
Our goal is 24oz of formula a day. Right now John is averaging 20. He has come a long way. In November when we started this elemental diet he was averaging 13oz, he bumped up to 18 when we cut out baby foods and is now up to 20. We started a steroid today so we should see some more improvement over the coming weeks.
His smile lights up my life. He is so happy and that means so much because so many kids are in constant pain and can't even get a good nights sleep. Our boy really is remarkable.

Thursday, January 5, 2012

John's Story- The Condensed Version

This is John and this is his story of life with out food.

Flash back to December 15th 2010 at 1:53am. That's when John was welcomed into this world perfectly healthy, weighing in at 8 pounds and 14 ounces, the 95th percentile!
The first day everything was wonderful, he was eating and sleeping like a dream. The second day, however, he started to get really fussy and was spitting up quite a bit. The nurses all said it was probably a milk sensitivity and switched him to Soy formula. Things got a little better and we went home with our Soy. 
We went home assuming that his spitting up was normal baby stuff, I mean what did we know? We'd never had a baby before! We took him in to see his pediatrician for his two week check up and he had lost a significant amount of weight. More than the norm for new babies. This was concerning to his ped so he started running the gauntlet of tests to figure out what was keeping our little guy from growing. We had blood work done (On Christmas Eve no less!) and an upper gi with barium. He was diagnosed with 'severe reflux' and given some medication. John continued to spit up and was occasionally vomiting. His ped switched him to so many different formulas that I can not even remember them all now to try to get John gaining weight but he could not manage to keep any of the milk based formula's down. So back to Soy we went!
By February John had dropped from the 95th below the 25th. His Ped said not to worry 'as long as he's growing'. At this point John was projectile vomiting multiple times a day, not growing but in all other areas such as sleep, mood, development, was just fine. 
By June he had dropped to the 5th. Ped said not to worry 'as long as he's meeting his developmental marks'. He was still vomiting multiple times a day but I could not get his ped to understand that I knew the difference between 'spitting' and vomiting. 
All this time I have no reason to believe that his ped doesn't know what he's talking about and trust him even though I have a nagging feeling that something is not right with my son.
By August he had dropped below the 3rd percentile and was not crawling and had only just started sitting up on his own for about a month. Needless to say we were starting to miss developmental milestones. What did Ped say? 'Let's not worry.... yet'. That was it, I was done. I started looking for a new Ped. 
I finally found one in October. He immediately sent us to a Ped GI specialist. We had another upper gi done and in November had an EGD (scope down the throat) done. 
That biopsy came back positive for Eosinophilic Esophogitis. 
English please?!
 Yea, that's what I thought too. I'll get into it in more detail later but pretty much he is allergic to food. All food. His body treats food like an infection or virus and attacks it making him vomit. He is now on a completely elemental, amino-acid based formula and nothing else.
You would think a kid like that would be miserable no? Well check this out...

This is John on his first birthday.
That's what he looks like ALL the time!
He is seriously the happiest baby I have ever been around.
Today John weighs a little over 16 pounds. He had gotten up to 17 and a half and actually doubled his birth weight last month but dropped back down this past week. 
I am writing this for him, and for me. Documenting our journey through this rare and relatively new disease. 
This is John's Story of Life with out Food.