What a lottery to win!

[scsigrl]

So we went to a new allergist today. He was AMAZING! I am truly in love! FINALLY! This is the 4th Doc and we have found a winner Anyone in the Cleveland, Ohio area needs a rec, I have one!

That said, he has informed us that we have won the triple lottery!

FPIES
Allergies
Celiacs

I knew all this (well, I had a feeling on the FPIES) so that wasn't a real surprise but he was really great. DH and I both were very impressed. DS did well with the SPT but was PO'ed that he couldn't put his shirt back on. Once he had his shirt back, he finally accepted the sucker I had for him

[ASusan]

I am so sorry for your child's diagnoses. What a lot to deal with.

Can you say a little bit more about what you like with respect to this allergist? Personality/office manner? Listens to you? Goes the distance in terms of testing? Willingness to think outside the (western medicine) box?

Thanks!

[scsigrl]

Thanks! We aren't really dealing with anything new, just a new name is all really.

What I liked about the Dr. I will list

1) Said it was AMAZING and wonderful that he was breastfed till 18 months (not as long as many here but ya know It's nice to have someone IRL realize what a great thing it is!

2) Very up to date with research.

3) Discussed ALL our testing options, when he recommends doing food trials, that a food trial is TRULY the only way to get a 100% dx, that tests are indicators and not 100% (DS reacts BAD to bananas but the tests say no, old allergist said "Oh he's not allergic! Period.")

4) Spent the better part of an hour with us all together (before and after testing).

5) Really thought about our questions before answering. Taking into account all we had told him about our DS's issues before answering!

6) Gave us his email to remind him about something he wanted to research for us. Reminded us to be sure to email him too. He wants to get us the most accurate information and I appreciate it.

7) HAS KIDS WITH FOOD ALLERGIES! I think living with it vs. just knowing about it is TRULY a huge difference

[ASusan]

SO, a few more specific questions from me, if you don't mind.

Did he discuss/acknowledge/mention the difference(s) between IgE and IgG reactions? Offer to test for IgG reactions? The difference(s) between "true" allergies and intolerances?

A true test is a food trial - in the office? Or at home? Is a delayed reaction considered a 'true' reaction, or only something that results in hives/skin wheals is a reaction?

(DS passed a very expensive in-office challenge of cow's milk, only to have what *I* consider to be very disturbed sleep and itchiness later that week at home. DH and I don't agree on whether DS reacts to dairy. Maybe we need a marriage counselor, but I think a really good allergist would help.)

When you say your DS reacts badly to bananas, what is that reaction?

We've had some not-so-great experiences with allergists and dermatologists. (Who share a suite at Children's Hospital, but don't communicate with each other or about each other's specialties. Only the derm nurse was willing to say my son's eczema might be allergic. NEITHER of them was able or willing to have a conversation about the possibility of SOLVING or FIXING the problem. Both said it was random, and basically, we'd never figure it out.)

Thank you!

[scsigrl]

I know how hard it is to struggle with people who just don't listen or care about getting to the bottom of things. It is so hard. I can't even imagine if my DH was not 100% with us on this. I am sorry for you

He was willing to go into things more but I stopped him : I try to listen but have issues with jumping the gun on stuff He did go into IgG and IgE. He was not as interested in the emotional effects (DS gets hyper after having citrus) he said it was not what he considered a "true" allergy reaction, but WAS a reaction. As for in office challenge, we didn't go into it too much because we are nowhere near being able to do one. DS's levels are too high to try anything.

[ASusan]

Ours was perfectly willing to go through with the in-office challenge for dairy because DS has never tested positive for dairy (via RAST or SPT). That's why I'm thinking it is an IgG reaction, and that we may have other IgG reactions. But our current allergist doesn't seem to care about those types of reactions.

I'm PMing you.

[JaneS]

ASusan,

Might it be possible that your DS was reacting to the preservative in most milks? It's not on the label but any milk that has the chemical vitamin A added has a BHA/BHT preservative in the vitamin. The Feingold Association warns against this.

Is he salicylate sensitive? That reaction is the exact same one my DS gets to OD'ing on sals, eczema and disturbed sleep. ETA: artificial preservatives and artificial colors are the highest salicylates ... like the aspirin compound... that provoke reactions. Other food such as tomato sauce, berries, almonds, honey, tea, et al have them in high amounts as well. Most fruits and veggies have them to some degree.

Salicylate intolerance does not involve the immune system at all, it's a reaction to food chemicals not being detoxed properly due to nutritional deficiencies and/or thyroid issues I'm finding.

[ASusan]

Go away, Jane. You're telling me stuff that makes too much sense.

(just kidding on the dismissal, of course)

Just yesterday, I was following the hypothyroid discussion on the chat thread, and finally admitting that this might be a problem for me. And I have suspected sals sensitivity in DS in the past (again, following your discussions and just not wanting/able to come to the full conclusion). But, I do suspect that DS might have reacted to cider the other night (loves it, and just out this season...but full of sals, right?).

[JaneS]

Originally Posted by ASusan

Go away, Jane. You're telling me stuff that makes too much sense.

I get that a lot!

Yes cider is chock full of sals... juices and sauces (tomato sauce) are particularly concentrated.