Twoasone Re: EOS

macaroni1979

So we finally had our appt with the GI doctor. After explaining everything, he says that he would scope Asher but that he doesn't think he would find anything surprising. He says he believes Asher has an eosinophilic disorder (shocker) and that a scope at this point (we haven't tried any new foods in over a month) wouldn't show much. The two answers would be to modify the diet, which we know his safe foods and steroid therapy, no thank you. He says that we will work with the allergist to come up with a game plan for trying new foods and we are upping Prevacid to to twice a day. He thinks Asher will most likely be on formula for awhile. And we can just keep him on Alimentum till 2, and then move onto a toddler formula after that if he still cannot tolerate more food. He wants to scope Asher at 2 if we haven't made any progress. So, that is where we stand! Not really any more answers, but at least I know I am not crazy!

twoasone1

I am glad that you at least have a plan in place.  That helps a lot.  I am wondering why he doesn't want to start some food trials though and then scope after the first one?  Then you would have a better idea if he has an EOS and you would hopefully find some new foods.  I understand not scoping right now if he has only been on his formula anyway, the Eosinophil number wouldn't be accurate anyway. 

I am glad that you are getting some answers.  It takes a long time to get anywhere with these disorders.  Will was diagnosed in October and we only have two safe foods so far.  We also have two more bad foods to add to his 'regular' allergies.  Hopefully after the 19th we will add one more safe food!

I have been thinking of you guys.  Keep me posted!

ABColeslaw

Hey I just wanted to add onto this post, because today we had another appt with my Asher's specialist and for the first time they brought up Eosinophil disorders.  I thought it was interesting since we've had the Primary Immuno Deficiency/ Accute Multiple Protein Allergy diagnoses since he was 11 weeks old.  I asked a few questions, but I remembered you guys were going through this and was hoping that you could give me some more info. 

Asher is getting scoped and having biopsies done after his next food trial which is wheat (He tested positive to wheat, but they are hoping its a false positive)  Who knows...in any event it freaks me out even though its a clinical food trial.  

twoasone1

I would be happy to give you any info I have or to tell you my experiences.  Did you have any specific questions about it?  Food trials can be scary, but it such an awesome feeling when you can find a safe food.

A great website for more information about the disorders is www.apfed.org.  Good luck and let me know if I can help you at all!

macaroni1979

Hey girls! The GI told me we should be trying new foods every 2-4 weeks, which I so don't want to do. He said if we are still in this same place at 18 months or closer to 2, then we will scope. Honestly, I am okay with that, I don't know what all of this involves, but it scares me to put Asher through it. What age did you lo's have their first scopes? The GI dr at Hopkins told us he had already seen three babies Asher's age with the exact same symptoms that morning. So while it seems uncommon, I guess it really isn't?

I need to call the allergist next and find out what he wants us to do. And then get working on getting our insurance to cover Alimentum for another year! Also, most everything Asher has been tested for is negative, except the top 7. All the fruits/veggies he has reacted to have been non-IGE mediated food allergies, and not shown up on tests. We are having more bloodwork done at 12mo to see if any of the numbers change, so I guess I won't have any new news for a month. Good luck with your food trials this month ladies!

 

ABColeslaw

You're lucky that Alimentum is working for you!  Thats great, because if you have to you can get it at CVS.  Asher's food trials are every 6 weeks and if hes had a reaction, then we go back to just neocate for two weeks and then add back the safe foods before doing a food trial. 

His next trial is wheat and I'm really nervous because he was positive for wheat before.  Ugh.  

I don't have any questions yet because I'm overwhelmed.  I've been so focused on it being PID that I've been thrown for a loop.  But I did do some looking and it does seem like EOE falls under the PID umbrella so maybe they just didn't specify before.  

I have some blood work and levels I want to go through and I might private message you guys and see what you think.  

twoasone1

We also do food trials once every six weeks.  He gets a scope after everyone of them. 

I might just be getting used to them, but the scopes aren't that bad.  We do have to switch to general anas. this time, so maybe that will change my opinion.  We will see.  I think he had his first scope at around 9 or 10 months.  His first scope with biopsy (which led to diagnoses) was around 13 months old.

DS is also on Neocate Jr.  His safe foods are pure wheat, and carrots.  We are trialing pears right now and they seem to be going alright so far. 

It is so nice to have you ladies to talk to about this.  I have no one that I know in real life who has even heard of this disorder.  It has an estimated occurence of 1:2000.  I think a lot of people have similiar symptoms but when biopsied their levels of eosinophils are not high enough for the EoE diagnoses.  Eosinophils can be present in the esophagas in lower levels due to other conditions like GERD as well.  DS has both GERD and EoE so his are quite high. 

Anyway.  So glad to have found you ladies!