Introduce Yourself - We're Glad You Found Us!

[LWay]

HI everyone, nice to be here!!
So I have a son with a severe PA but we recently found out that he is also allergic to Walnuts and Pecans.  So now I am on the hunt for all the other tree nuts that are TREE NUT free.   
I am liking all the information I see on here concerning this.  Thanks so much.   

[GoingNuts]

Hi LWay, sorry you need to be here, but glad you found us!

For un-Xcontaminated nuts, try Wonderful Almonds.  They are used by Mt. Sinai for their almond challenges, and make a couple of different varieties.  I don't know if their pistachios are as "pure" as their almonds (DS is severely allergic to pistachios), but if they are that might be a good source for you.

Are you in the US?  If not, others might have some other recommendations.

Welcome!

[Mame]

I'm the mother of the child in the Gloucester food allergy case. Yesterday I happened to go to the web site Wrightslaw.com.and started reading the article "When a School Refuses to Protect a Child with Life-threatening Allergies." I burst into tears when I realized it was about my daughter. I had no idea her case was being used to help others. My tears were both of relief, for the validation Wrightslaw gave me for the actions we took, and of pain, from the memory of all we went through for the year it took to settle her case.

My discovery was pure chance. I'm a member of FARE, and I read in their newsletter that Pete Wright did a presentation on food allergies in June at their annual conference, so I went to his web site to see what information he had. I couldn't believe that the second article from the top of all the links on the Allergies/Anaphylaxis page was about my daughter! I didn't know anybody outside of Gloucester had heard of her case. I found your web site through a link in the first comment on that article.

It was written by Pam Wright in 2008, the year after the case was settled. I filed the complaint when my daughter was in kindergarten. The school nurse and her teachers were wonderfully supportive, but their hands were tied by the administration. My daughter is now 14, has always been out-going, intelligent, and athletic (according to her proud parents!), and still has life-threatening food allergies and a 504 Plan. We still live in Gloucester, and she is about to enter high school. She is now her own advocate for her food allergies, but does not like being singled-out for them. Most everyone along the way (with the exception of one middle school nurse) has been helpful about her food allergies without excluding her. I'm crying again as I type this. Thank you for all who left positive comments.

[rebekahc]

I'm so glad you stopped by!  We often refer to your daughter's case in our Schools section.  You were trailblazers in due process for 504s.  Thank you!

[CMdeux]

Honestly--- THANK YOU.  If there were a medal of honor here at FAS, you'd have one. 

Please know that I have often thought about your family-- and hoped that you had some notion of just HOW far you managed to pay it forward for others.  My daughter is a year older than your own, and I have to say-- the sheer scope of what it took to get a 504 plan for her is unthinkable by today's standards.  Your case is such a big, BIG part of that.

We all owe your family.  I know from experience just how hard it is to keep fighting so hard when you seem to be the only ones who understand WHY you are fighting. 

THANK YOU from the very bottom of my heart for being tenacious advocates.   

[Stinky10]

MAME - THANK YOU.  I used your case and my school dist attny said "Thank you for doing some research for me".    I'm fairly certain that my son had the first 504 in our district for food allergies.  I've passed the links and information along to many many people as well! 

Yes- I'd give you a medal for sure!   Thank you so much!   

[Macabre]

I am crying reading your post. Yes, thank YOU. I cannot begin to tell you how grateful I am for your work.

A little birdie tipped me off about your case through an educational periodical that mentioned it--basically giving a heads up to school districts about it. The term "prevailing agains parentst" was used, and I found it sickening. 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.

A few days before he published this article, my son's elementary school in Central Virginia granted his 504 elegibity. It was our second meeting, and the first turned out badly, with the elementary school saying my son did not qualify and my contacting OCR and our district's SpEd Director. The latter came to the second meeting.

The packet I had given him a week prior to that second meeting contained your resolution letter.

It packed a punch.

My son got a 504 at that second meeting, the first 504 for FA in our district.

So, so many people who have sought help at this site have also used your resolution letter. I cannot tell you how many kids your letter has helped.  Countless. Your hard work has made a difference for so many kids.


My son is now 16. We've moved and he was again the first to have a 504 for FAs.

I work for a nonprofit in Virginia, and we have a number of donors in Gloucester.  Every single time I see the town's name I think of you and imagine what my son's life would have been like without your letter. I believe it was a lynch pin in the case we made for a 504.

Thank you.

[Macabre]

Hero.

That is not overstating it.

[OptimisticMom]

Hi, I'm new here. I have a 12 month old daughter who has a bevy of food allergies: dairy, soy, eggs, peanuts, cashews, pistachios and I think avocado might need to be added to the list as well. I'm pretty much feeding her only fruits and veggies at this point (she's also still breastfed.) I had her tested at 6 months (skin test) and although I suspected she was allergic to dairy, soy and peanuts only dairy came back as positive. 2 months ago I had her tested again, new allergies suggested a blood test and all of the above came back except for soy, however, anytime she's been around or even touched with soy she breaks out into hives. So the allergist recommends that we keep her away from soy too.

I have no allergies, my husband has no allergies, our 2 year old has no allergies and our baby keeps adding new food allergies every few months so I'm completely stumped here. I know there must be some kind of methodology in finding the right allergy free yet balanced diet but I don't know where to start. I'm hoping some people here can point me in the right direction because people without kids with food allergies COMPLETELY DO NOT understand how serious food allergies are.

[Macabre]

Oh, you're right. They don't.

I know this is of little comfort or use to you now, but there is a good chance your baby could outgrow at least some of these allergies eventually.

You seem to be really attuned to your baby, and that really is a huge thing with FAs--especially before they can articulate something is wrong.

Did your doc prescribe an EpiPen jr?  I imagine your kiddo is still under the minimum weight for one, but you need to have some epinephrine on you at all times. I hope you're well situated there.


Day care is an issue if you work outside the home. It can be very tough, though it should be more readily available than it was when my son, now 16, was wee.

Things will get easier emotionally than they are now--even if she never outgrows. And sometimes it will get worse.  This life has its see saw moments! 

I'm glad you found this community.  I hope you find it helpful and welcoming.

[OptimisticMom]

Thank you for your reply!

Yes, we have a couple of EpiPen Jr. pens all over the place now and I keep Benadyrl everywhere. I think I'm better stocked with allergy stuff than diapers and wipes. LOL

I'm a work from home mom and my girls are with me full time, otherwise I think I would be a complete mess if I had to leave her with people who 'don't get it' every day. Once a week my daughters are watched for two hours at our health club while I'm offsite for a meeting and only once did my baby have a reaction while I was away. The girls in the daycare were about to use the Epi on her but thankfully I arrived just in time and it wasn't necessary. Talk about anxiety. She broke out into the hives from just sitting in a highchair in the daycare area. No idea what was actually causing her reaction.

I'm hopeful that she'll outgrow the egg allergy but her dairy blood test numbers were high. I'm also hoping to figure out what the deal is with the soy allergy thing. Her first birthday is actually on Friday and we'll see her allergist again next week to talk about flu shots and testing her again once she's officially a year old.

Because I'm still breastfeeding her I'm on a diet that is free of the things that have already been identified as allergens for her, but I would really like to start transitioning her over to some kind of milk and when I start researching the options and benefits and risks, my head just spins. Having a baby with food allergies is tricky.

[TabiCat]

My DS was about that age when diagnosed with the first FA. My head was swimming.  I made a lot of mistakes in those early days.  He has outgrown almost everything except the PN.

It is so hard to find what to feed them when they seem to be allergic to everything!

[joanna5]

Another huge thank you to Mame.  I, too, used your daughter's case when pursuing a 504 for my son.  He was found to qualify and was the first 504 for food allergies in that district.  You blazed a huge trail for those of us who have come behind you. Thank you.

[yelloww]

Hi Mame!    welcome! We are your biggest fans!

I can't thank you enough for filing your case. My son is a year younger than your daughter, so the resolution came out right when I was starting everything with our 504. I had your resolution in my back pocket when working with the district. I was lucky enough to get what my son needed the first go-around, but it was a huge weight off of my shoulders to know that I had your ruling on my side as legal support for my request.

I hope you stick around. A whole lot of what happens in our schools forum is because of you. 

[PurpleCat]

Hello Mame!  Ditto what the other members have said!  You, your story, and your willingness to share has helped so many of us!