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.

Doctor Communication Issues for Eosinophilic Esophagitis Management

I'm getting a bit frustrated with the lack of communication betwen my doctors. We see a GI and and Allergist and our Pediatrician. Our last pediatrician didn't give two hoots about my son's Eosinophilic Esophagitis. He also had some other major downfalls and he is no longer our pediatrician. We now have a great Ped that we love. He is listening and learning about EE.

The real issue is between the GI and the Allergist. They are both good, both highly recommended, and they know of each other. We saw the allergist in Jan. and Feb. of this year for testing and consultations. He said he was going to contact the GI and discuss our case with her and would get back to me. I waited, ended up calling and was told he was out of town and had our chart. (Hopefully at some big EE convention learning??) Anyway, still haven't heard anything from him.

Today we went for a routine visit to the GI and she said she had received a letter with the allergy testing results, but that was about it. She had not talked to him. She said she would contact him herself.

They are good about sharing test results and such, with a little help from me (reminding them to have copies of lab results sent to everyone, etc.), but some things seem to need some one-on-one conversation. I was asked if the allergist was planning to take my son off of the flovent? I don't know. She would like to rescope him after that, or if we're not going off of it, then now would be good. They really should talk and put together a treatment plan.

I know as the mother of the patient, I'm ultimately responsible for seeing that things get done. But I don't like being told that things will happen and then they don't.

How are the rest of you handling the multiple appointments with various doctors and the communication between them?

Questions About the Future

The other night I laid in bed thinking about the future for my son. We've actually been managing pretty well. I did however recently decide to join American Partnership for Eosinophilic Disorders (APFED) in hopes of meeting other parents and families dealing with similar issues. I also signed up with another group of people dealing with EE and other eosinophilic disorders. What I got was overwhelmed. What I read about was all the issues other people were dealing with and the questions they had that didn't have answers, and the lack of expertise with these conditions. I was doing OK, and now I have a lot more questions, or rather concerns about what the future holds.

• Will my son's condition get better, worse, or stay the same?
• The disease has only been diagnosed, treated and studied for the past 10 years.
• No one is certain of the pronosis long term.
• There is no cure at this time.
• Treatment is pretty experimental with drugs or extreme in that some children are taken off of all foods and fed a special formula, some through a feeding tube and if they're lucky, they can resume eating a handful of foods as they try each one and see how their body responds.
• No one knows why it happens in the first place. How much research is actually going on about this?
• Many medical professionals have never even heard of these eosinophilic disorders. I've read about how some parents are told they have no idea what they're talking about or laughed at by doctors when they do what they can to fight with not much more to go on than their gut instinct. Why aren't medical professionals updated on these illnesses?
• How will my son manage his treatment once he starts school? Will he somehow be pegged as different because of it?
• I read so many people talk about their teenager being diagnosed, or their second child being diagnosed later in life than their first child, or whatever the scenario. So, just because my daughter seems to be perfectly healthy now and has zero symptoms of this condition, it doesn't mean that she won't still come down with it in the future??? There is apparently a 50/50 chance she could also have it.

There are just so many unknowns about all of this. It can keep a person up at night wondering and worrying. I truly hope that more people become aware of these eosinophilic conditions, that funding is given to better study them, that treatments that work can be found, and that doctors all get educated appropriately so as to help those of us who look to them for answers.