Introduce Yourself - We're Glad You Found Us!

[Wrightslaw]

Fantastic -

"I called OCR in DC and asked for the letter, and they sent it to me, first by fax and then in the mail. I scanned the mailed version and emailed it to wrightslaw.com, and it was (thrilling) news to Pete. I wanted it up publicly--so we could share it here and so other FA parents would have access to it. Pete ran with it--much to the delight of this community."

I am so glad you did so, you really set something in motion. Since my presentation at FARE in June, we have many more links and cases that I used at that program. On our wrightslaw.com website, far left margin, scroll down to "allergies" and you will find the OCR Gloucester letter and many more.

It's the trailblazers like Gloucester Mom and Macabre who are changing outcomes. Thanks.

Pete Wright

[SilverLining]

This is the greatest page topper in the history of FAS.   

Edited to add:  and thank you for all you have done.  I'm Canadian, so haven't really followed this, but I do know how much Wrightslaw has made a difference to so many people on this forum.

So, thank you.

[Stinky10]

Pete - you are a hero in my house.   A true hero.

[CMdeux]

Yes, THANK you, Pete!!

And thank you for posting!   

[ajasfolks2]

So, Mame (and Pete Wright) --

I'm sitting here crying too.

This has all been so worth it -- getting FAS up and running and "out there" for others to find . . . advocating for and supporting those with food allergies -- late nights, early mornings, contentious (brutally so!) 504 meetings for many of us.

We (my family / son) were one of the earliest 504s in Fairfax County, VA.  The Gloucester letters and docs made them sit up and TAKE NOTICE.

~ ~ ~

And, TT, wherever you are, I know you are here.

THANK YOU TOO. 

~e

[b_griff]

Hi

I am 24 years old and recently found out i am allergic to soy, seasame, peanut, tree nut. I also have had fruit allergies since i was a little.

[rebekahc]

 

[SlabCity]

HI I'm Robi...I don't have a doctor verified food allergy, but I know my gut can't handle any GMO's.  Really hard to dig the truth out. Hoping I'll find some tips here...So does anyone know if New World frozen fruit is non-GMO?  source of their products?

[SilverLining]

...

[ArtistGirl1]

Hello, I am the mom to two children with food allergies.  My 16 year-old son has contact allergies to food.  I was wondering if anyone on this board deals with a contact allergy and how you do it.  Also, have any of you used Xolair (Omalizumab) or know anything about this IgE inhibitor?  Thanks in advance for any BTDT advice or information you have.

[Macabre]

We do have a couple of people here with Xolair experience. I took it for a while, but another member's son was one it for a longer period. He had multiple FAs (many!) and the Xolair helped him considerably.

I did help me, too. I noticed decreased sensitivity to airborne shrimp. But I wasn't on it for very long.

[rebekahc]

Hi and welcome!

I'm one of the members with Xolair experience.  My DS started taking it when he was 7 - over 10 years ago now.  That was just after it got approved for asthma.  Luckily (?) for us his asthma was bad enough to qualify because we really wanted to try it for any positive side-effects it might have on his food allergies.  We were able to keep him on Xolair for several years (until we lost our insurance and couldn't afford the more than $3K per month cost to continue).  During that time, all his food and environmental allergies got much better - he was able to eat, to some degree, almost everything he was allergic to (long, long list with most of the top 8 on it) except for nuts and peanuts.  We weren't willing to try those due to a few instances of itchy throat with likely contaminated foods.  His asthma completely disappeared.

Now that he's been off of the Xolair a few years, his asthma is creeping back in, but so far he's just needing the inhaler occasionally.  Most of his food allergies have stayed gone except milk has come back worse than it was before.  So far, he still doesn't seem to be contact and airborne reactive to peanuts like he was pre-Xolair.  He's also started having OAS (oral allergy syndrome) to most fruit, so I suspect his environmental allergies are picking up again, too.  Unfortunately, though, now his asthma isn't bad enough to qualify him to get back on Xolair. 

Honestly, I don't know if he would go back on it given the option at this point.  His asthma is pretty good and his food allergies are manageable.  The shots were so big - almost 3cc of corn syrup consistency (so large bore needle) - and having to go each month when he's busy being a teenager...

Let me know if I can answer any questions for you!

[CMdeux]

While I can't help with the Xolair portion of your question, I do have some not inconsiderable experience with a teen who has a very low threshold.

I was wondering if anyone on this board deals with a contact allergy and how you do it.

Well, you learn to play it by ear, obviously-- there are things that we have our DD (now15) avoid, and I couldn't probably even explain WHY we do those things, because it's not always clear why the risk exists at a particular activity/location, but just that it DOES.

For example, I know that about 10-25% of the time, DD is going to have contact reactivity if her allergen is around.  This is allergen dependent, of course, but peanuts and treenuts are a definite culprit there. 

We've also learned over the years that CONTACT reactions aren't especially dangerous-- just irritating-- but it's what they signify that makes them scary and worth avoiding.  DD's ingestion/internal exposure threshold is SO low that we know that any contact reaction is an indication that a setting is MASSIVELY dangerous to remain in, because an amount large enough to elicit cutaneous symptoms with contact is more than enough to cause anaphylaxis if ingested or inhaled.

Other kind of ritualized things that we do:

a) handwashing-handwashing-handwashing-- every time we re-enter our home, and definitely every time before eating or handling food-- ANY food.

b) we carry clorox wipes everywhere.  Purse packs are awesome.  Some people use baby wipes, which are easier on the skin, but we can't b/c of my dd's aloe sensitivity.

c) DD is profoundly aware of where SHE puts her hands-- she avoids common touch-surfaces like stair railings, doorknobs, etc. with her bare skin.  Period.  This particular behavior avoids an enormous number of problems.  It also means, however, that you can bring residue home on jacket sleeves (she pulls her sleeve over her hands to open doors, etc.)-- so be cautious about that in a setting that is LIKELY to be contaminated.

[Macabre]

Oh, you can really feel it going in. Yowza.

[msamber0910]

Hi! My name is Amber, 34 years old, and just found out I have some food allergies about a month ago. Peanuts, treenuts, coconut. As well as my severity of outdoor/indoor allergies after some testing. Cats, weeds, trees, dust mites, and grass. Trying to come to terms with the food allergy, so thought I would come to a forum to get some others input who may have ideas/tips/etc how to do things like eat out, or go to festivals!

Thanks!