Welcome to Winning Against Eosinophilic Esophagitis

I wanted to start this blog to share with people the challenges families face when a child suffers from the condition called Eosinophilic Esophagitis. I didn’t know anything about food allergies or eosinophilic esophagitis (EE) prior to my son being born in 2004. Since this all began, we’ve been through so much. In my desperation and search for information and support I have read so many other stories about children with EE. Some of those stories brought me to tears and have made me truly grateful that our situation is what it is, and not any worse. My heart goes out to all the families dealing with EE and food allergies, no matter how little or how much it affects you. I’m hoping that by sharing our story more people will become aware of this condition, and that it might help some families get some support or answers. I know for a long time we didn’t even know what was going on, but now we have a diagnosis that we can work with. I hope that we all lead a winning battle against this life changing condition.

To read about our story, scroll down toward the bottom of this page.

Thursday, April 17, 2008

Mystery Setback

Just when we thought things were going great.... another question pops up from this mystery illness.

Jason has not been sick in over a year since we restricted his diet and put him on medications. His last biopsy was clear in January 2007 and his blood eosinophil levels have been low and decreasing.

Then today... we got the results of his blood test from this week. It was to see if the additional elimination of milk and barley was the key to getting his eosinophils to within normal limits.

Nope! His eos were very high... in fact, higher than when he was one year old when this all started and his eosinophils were 24%!! Quite frankly, I'm amazed he hasn't shown any outward symptoms such as vomitting and regurgitating while eating.

So why have his blood eos jumped way up??? It has to be one of three things, or maybe a combination of them. 1 - We reintroduced wheat back into his diet based on the fact that he recently tested negative for wheat allergy on both the scratch test and the patch test. He has been eating wheat for 3 months now without any adverse reactions. 2 - Seasonal allergies. Despite taking 1 1/2 tsp of Zyrtec a day he has been suffering major sniffles and red eyes. He has tested for environmental allergies, but there isn't a whole lot you can do about them. 3 - He has some of his sister's special egg free, milk free, corn free, etc. birthday cake. We let him have a little bit of the frosting which did have corn syrup and corn starch in it. Now, we have let him have a little bit of corn syrup and corn starch (in sprinkles or M&M's) in the past and his blood eos have been low. So, we're not 100% sure that's what did it this time.

We are waiting to hear back from the allergist as to what the plan is. Until then, I'm going to be on the look out for any outward signs of problems. I'm crossing my fingers that this is indeed a seasonal allergy issue and that the poor kid can continue to eat wheat. Otherwise, on to more food eliminations.


Stephanie said...

i am curious if you have heard of a technique called NAET? it gets rid of allergies. it may help your son. if you have any questions please feel free to email me.

Tracy said...

I have heard of it, but it's hard to believe it. If it truly works then I would think doctors would be recommending it. Also, we're dealing with the EE component in addition to allergies. I will definitely look more into it and keep it in the back of my mind.

Stephanie said...

thanks for response- i know it is hard to believe.i am an naet practitioner and it took me awhile to really believe it my self!
two things: 1)google EE and naet, and see what comes up. there are several case studies and people with experience (that have children with EE)
2) western docs do know alot, but they do not know EVERYTHING. they have a different mindset, usually pharmaceutically driven unfortunately.They were giving your son pharmaceuticals when the change of the diet is what was called for. Diet can make such a difference with so many chronic illnesses, yet pharmaceuticals is what they reach for.They still do not believe that all these vaccines could be causing autism. 1977 we had 10. now we have 35 vaccine shots.NAET will certainly not harm your son, and it could help. It works wonders for children and food allergies, both of which is your case.Lastly, if it is doctors that you trust- there are mds that practice NAET. if you look up the website it shows the practitioners and the degrees they have. please email me with any questions,and good luck to you and your beautiful son.

Tracy said...

Stephanie, how would I reach you? I can't find an email through your profile. I am researching the NAET stuff. Though it may not hurt my child, if it doesn't work, we'll be out a lot of money, so it's a gamble without knowing it'll work.

Tracy said...

We are in a 3 month wait. We will retest in July and see what we see and go from there.

Stephanie said...

i just realized on the naet website testimonials there is woman who does a testimonial for ee, with her contact information to ask questions. might be worth a call.

kasydi said...

My daughter is 2 and was diagnosed with EE. I was reading through the threads and saw a comment from someone named Tracy talking about NAET and was curious if you had tried that and if so what was the outcome. I am taking my daughter back in for more testing tomorrow. They believe they are missing something besides wheat, soy, egg, strawberry and rice. I will talk to the Doctor about NAET as well.

Shane said...

I was diagnosed with EE at the age of 23, and am now 24. This was in February of 2011. I have done the allergy testing, elimination diet etc., I just graduated with a BS in Health Education from a respected University. NAET, although fairly expensive is the only treatment that claims positive improvements, and the only testimonials of cured EE. Yes, I know it is something fairly new to the biased minds of the western population, but MOST Dr's are controlled by the billion dollar pharmaceutical business that's pay their checks. I was very cautious of their techniques, massage therapists, acupuncturists and so on, but after a terrible experience with TMJ and thousands of dollars on retainers and more pills, I met an Accupuncturist who solved my jaw cracking ear pressure and headaches in a 5 min sitting that has forever changed my outlook, how? By touching two points, one on my ear and one on my middle finger.

Being said, I went from a healthy 6'1'' 225 male to a fragile 200 if not less because of EE. I suffer daily, and as your children get older they will begin to be aware of how different they are. By all means, trust your Dr, but they Do Not know everything, and there are reasons why they don't. Spend the money, what else do you have to lose? Oh just your child's sanity through being sick constantly at times. Believe me the inhalers, steroids, elimination diets, they are pathetic in controlling a much stronger manipulated immune system, these bandaid fixes are screaming that our western medicine is not helping the issue of the immune system, but just trying to cover up the symptoms. I begin NAET Tuesday of next week and will take the first step in becoming the active healthy person that I once was.

Our Story

My son Jason was born January 17, 2004. He was a very easy baby. His only issue was that he spit up like crazy and lots of it. The doctor was never concerned because he was gaining weight just fine. He was my first baby so I just thought it was normal. In fact, he was a chubby little baby. He also had eczma but no concern there either because it didn’t seem to bother him and it’s pretty common.

At his 12 month doctor visit they drew some blood for some standard tests including things like lead and iron. Our pediatrician called though concerned about a very high level of eosinophils in his blood. She told me these typically indicate some sort of allergy. We did some further RAST testing (blood tests) to see if he might have any allergies and then we visited with the allergist. He wasn’t much concerned because all the testing doesn’t mean anything if there are no outward signs to back it up. He did score high for egg allergy and some others also showed up. He recommended we avoid egg and peas (peas was the one thing that started to cause him to break out in small hives where they touched).

Interestingly enough, for his first birthday we had some friends over and he ate birthday cake. Shortly thereafter he vomited and it was a big fiasco and my friend had to show me how to use my portable rug scrubber. It was a memorable day! But looking back now, he most likely had an allergic reaction to egg in the birthday cake.

Despite the removal of egg from his diet, he continued to “spit up”. Though now that he wasn’t a baby, it was more that he was vomiting. But visits to the doctor’s office came back with discussions about a very sensitive gag reflex, and possible reflux.

As time went on it got worse. We carried a barf bucket along with us everywhere we went because it would happen without warning. It wasn’t always after he ate. Zantac wasn’t doing anything to help the situation. He was eventually throwing up 2-3 times a day without any rhyme or reason. It was utterly exhausting to always be on edge. Any time he coughed we would run through the house to grab a bucket and try to catch it. There were several bedtimes that ended up with messy sheets, midnight baths and lots of tears. He cried every time he threw up and he didn’t want to do it anymore. He also wore a plastic bib for meals no matter what because in the middle of his meal sometimes it would come right back up, hardly chewed and definitely not digested. I don’t even know that it was making it down his esophagus. This is all pretty gross, I know, but it all makes complete sense now.

In September 2006 I happened to find some other mom on a message board who said “sounds like my son’s symptoms… have you checked for eosinophilic esophagitis?” I checked out what little information I could find about it and it seemed to fit Jason’s symptoms right on. I took him back to the pediatrician and told her that something is definitely not right and that I wanted to see a Gastroenterologist asap and to discuss eosinophilic esophagitis (EE). We saw the GI very quickly and scheduled an upper endoscopy to do a biopsy, the only way to identify for sure if the condition is EE or not. The results were good and bad at the same time. Yes, indeed he did have eosinophils in his esophagus indicating he had EE. We were sad, but at the same time, we were just finally so relieved to get an answer as to why he was throwing up constantly. He was on Zantac and swallowing Qvar daily to help manage the condition, but they truly didn’t make any difference.

We were referred to an allergist again. On October 17, 2006 he had some scratch testing done on his back. He showed allergic reactions to a long list of things. We were sent home with list of things to avoid. We were in tears over how we would manage to eat while avoiding eggs, chicken, turkey, wheat, corn, soy, nuts, peanuts and peas. And we were sad that he wouldn’t get to experience food like the average kid. I went through our kitchen cabinets reading every single label and getting terribly frustrated because our food is laden with these products. However…

Amazingly, my son didn’t throw up a single day after we changed his diet! We were so completely happy. Seeing him be so much more healthy was all the inspiration we needed to seek out other food options and to make this work. He had another biopsy on January 16, 2007 which showed he was 100% clear! Again, we were terribly excited that the restricted diet worked. We would continue on that diet for quite some time longer. We had periodic check ins with the GI and the Allergist. Lucky for Jason, his blood eosinophils seems to be related to his condition. I’m told that not all people can be followed with blood testing to see how they’re doing. But in his case, we could see that his blood eosinophils had gone way down.

In March 2007 he came down with a cold that left him broken out in hives and throwing up. I had not heard of cold viruses giving people hives before, until then. But as soon as the cold passed, so did the hives and the occasional vomiting. His blood had tested a higher level of eosinophils which then went back down after this viral episode.

And again, not a single symptom of his EE since we had changed his diet. We continued with this diet for over a year. His medicines changed a bit… Cimetidine, swallowing Flovent, taking Zyrtec for seasonal allergies, and iron supplements. But all in all, things were 99% good. There was just that lingering small amount of eosinophils in his blood.

In January of 2008 he underwent a repeat of the scratch testing. He now showed negative for a lot of things he had previously shown positive for! We were so excited that we might be able to reintroduce some foods back into his diet. But the doctor wanted to do patch testing to confirm the allergies.

In February 2008 we did the patch testing only to find that he showed positive to many foods still. In fact, he showed positive to milk which we hadn’t been avoiding in the past.
I came home half in tears again. Instead of adding things back in, we were now removing more items. Actually, we got to put wheat back in (that’s a biggie), but we had to remove milk and barley (which is in a lot of wheat products). It was hard to tell him that he could no longer have ice cream, cheese and butter. But actually, he seems to be taking it better than us!

So far we’re managing. It’s so difficult when someone is allergic to milk AND soy. And it’s so difficult with such a long list because there is usually at least one thing in everything that he can’t have. And corn… don’t get me started with corn and corn syrup being in everything!

I hope to someday deliver a happy ending to this story. Until then, we continue the battle!