Kids w/food allergies, support group forum - long

I'm really struggling with finding support on Wil's food allergies. There are a ton of websites out there geared for just this, with awesome information and resources, but often times their forums require you to pay a small fee to be a member. I feel close to you all here, and personally don't really want to try and "connect" with a whole new community, so I thought it would be really great if we could start our own "kids with food allergies" support network. I believe there are several other parents here that have kids with life-threatening food allergies...So I truly hope this is something that others will respond to.

Just so you know what I've been up to lately, I have written several letters to the Youth Program Director at our local YMCA informing them that they need to crack down on their snack policy in the kids area. I'm so frustrated. Parents are bringing in snacks of all kinds, no one is monitoring the food tables, kids aren't washing their hands before they are playing with the toys. It is gross. Not only am I afraid of Wil having a reaction (nut/seed allergy), but I just think it's unsanitary. So I wrote a nice informative letter, I thought. I gave them statistics about the rising number of kids with food allergies across the nation, how it effects our kids (possible death), etc. I told them that I thought they needed to take it more seriously, post signs informing parents, having kids wash their hands better, and staff needs to monitor the tables closely. I understand it is my choice to bring my kids to the club. I have done everything as far as putting a big shirt on Wil saying "don't feed me I have food allergies" and providing him a safe snack. The staff have gotten to know me, but it seems to get worse everyday. They first said "no nuts allowed", but I see Cliff bars and whole pistachio nuts, trail mix galore. And they "say" they have a no sharing policy, but I picked up Wil the other day to find him eating two bags of someone else's snack. No one doing anything about it! So I received a nice letter back, saying they would take my suggestions and make some changes. But it really isn't enough IMO.

Then let's head over to Wil's preschool. The Director asked I write a letter to the parents informing them of Wil's allergy to tree nuts, seeds, peanuts. Her own daughter is allergic to peanuts, so I felt she understood. She informed me that she had to get the letter approved by her board before passing it out to the parents. It's been several weeks now, still no letter out. I bring Wil's snack and lunch to school and his teacher is good about sitting with the kids at lunchtime, so I feel he is safe. Until today...I walk in to find a large bucket of bird SEED in the classroom for an activity. Now I have expressed to them that I don't expect them to make their school (nor the YMCA) completely allergy free. I know that's impossible, but I am trusting these caregivers that they will do everything in their power to protect Wil. I have made lists of what is safe and what is bad. I have written emergency plan of actions, permission to administer Epipen forms, etc etc. The Director even trained her staff on how to use the Epipen. Love that! But it doesn't make my fear go away. Today I was in tears as I dropped him off (after talking to the teacher about the bird seed). I have not a clue how to get these people to take food allergies seriously!! I feel that I'm always apologizing...FOR WHAT? We're not talking a simple reaction like sneezing or just a small rash...We're talking possible death! I don't have a clue as to how Wil would react from playing with bird seed, but let's not find out! I feel like such an irresponsible parent you guys every time I leave Wil with someone. Even my MIL forgets to take the Epipen with her on trips to the store with Wil (unless I remind her). I love his school and they "say" they will do everything they can to protect him, but will it take an actual reaction for people to actually take me seriously? What if I hadn't seen the bird seed bucket and hadn't warned them that Wil shouldn't play with the seeds????? Frightening.

I told DH this morning that I'm seriously considering homeschooling the boys. It's not for me at all, but I feel truly helpless here. DH says it will get easier in elementary school and when Wil can protect himself...Will it? A part of me believes that if I choose to homeschool, it's like giving in on the fight. I can't hide Wil away for the rest of his life. I feel I need to be an advocate for my son, which is why I've been writing the letters lately. Unfortunately it's not making much difference.

I hope as a group (forum), we can share our struggles together, support each other, make suggestions on what works. As a parent, with or without a kid with food allergies, you want to protect your kids 100%. So IMO, I feel like I'm doing what any parent would do in this situation, but I really feel like I'm getting nowhere. Thanks for listening.....

Rae, I can totally understnad where you are coming from. I do deal with these same issues, and I am sorry that the people that are in charge of these functions are not receiving your information well.
I do have a t shirt that I make jake wear when we are out in large groups, its from a really nice company, it has a large allegator on the front and it says I have food allergies, and then in black marker on the back, i have his name in large letters, and it says allergy alert. I have had people comment on it, and laugh and then i certainly set them staight, and by the time i am done explaining the really bad of end of food allergies, believe me they are sorry for laughing..

let me pm you and give you some resources, but i think this forum would be great and i have a lot i can contribute to it. i also have not joined any of those other forums, but thru experience and getting help from others, we have worked thru it..
dont get to frustrated, and you dont have to put your kids in bubbles, you can work it out.
i am so sorry it seems hopeless.
but people are more and more coming into contact with kids with food allergies, and its not a rare thing any more, its going to have to dealt with .

here is a link to really good allergy t shirts and bags and lables that really help us a lot..they are good quality items and worth every penny.

http://www.allergators.com/

I think this is a great idea.
There is a little girl in Alex's pre-k class with severe peanut allergies. We (parents of students in that class) were made aware of this and were told please no peanut butter at all. No nuts for snack. Its very scary Im sure. I dont have experience with this, but I know it is out there and the more its talked about the more the rest of us will be aware.

eta: http://www.foodallergy.org/ This is a link to the network/foundation that Trace Adkins is part of. He has a daughter with life threatening food allergies.

This post has been edited by AlexsPajamaMama on Jul 22 2008, 06:03 PM

Thanks Michelle and Stacy!

I think a forum about allergies is a great idea. Even if my children do not have any allergies (that I'm aware of), I'd love to get more educated.

Keep up the good fight.

Ditto, I hate the thought that my limited knowledge (and possibly that of a school or other place where kids go) might possibly endanger a child. I can understand your frustration, we want to protect our kids in every way and it can be difficult when others don't "get it"

Rae. i know it's an uphill battle but don't give up. James has food allergies but thankfully his are not life threatening... just torturous. he gets extremely itchy and cannot sleep. daycare was probably my biggest battle but after much persistence, they finally got with the program.

he has grown up with a boy at school who does have a severe peanut allergy (as well as dairy and gluten) and i know his mom has gone to incredible lengths to educate people around her. yet still, ignorant parents continue to sent peanut products to school. she has told me that her heart aches for him because she couldn't allow him to be a "normal" kid for most of his years because of people's stupidity. you would think with all the info on allergies people would stop giving out peanut treats at halloween or make sure it's a nut free cake at a class party. she suffered the pain of watching her child attend birthday parties and not eat what the other kids have, not be allowed to sneak a treat our of his loot bags, not go on trips without her. it's tough but she got through it and so will you. she joined the PTA and attended all school trips and functions. she demanded newsletters be sent home at least twice a year. she has educated teachers and volunteer staff to recognize products with hidden nuts and confiscate and dispose of them immediately. he is now 10yo and able to tell people about his allergy. sad reality for a kid but necessary. don't be victimized by this. you are a strong, intelligent woman. you can win this fight and protect other kids with life threatening allergies. go over heads... speak to owners, superintendants, MPs, whoever it takes... you will be heard and you are certainly not alone.

Rae once he gets into school it will get better in some ways
You send in a DR note stating his allergies and the school has to provide a nut free table for him to sit at bc they cant make the other children not bring their foods to school that have nuts in them and the best is the food director cant order anything with nuts or oils made from nuts I know this bc of us having 3 children in our school who have nut allergies so in a schools stand point its very safe for the children to come but its not 100% bc of the other children Its just best to teach Wil not to eat or touch others foods even if they sit at a nut free table and as he gets older it gets better hun just dont give up fight for his rights.


I think a support group would be GREAT here also bc of my Katies Lactose allergie bc were always looking for other ways around things.

Ahhh thanks you guys!! Kimberely, what you wrote hits so close to home! I took Wil to a birthday party last Sunday and I felt guilty ASKING the parent if the cake was safe. I always feel like I'm burdening them. People seem a bit offended, like I don't trust them. Or it's that look like "obviously there aren't peanuts in the cake". People assume things are nut-free, but you just never know.

I guess they also had a party in Wil's class yesterday and the teacher said Wil threw a fit when he couldn't have a cupcake. Guess these cupcakes had PB in them. So the teacher made the right call. But they also had a pinata and of course all the fun loot to bring home (that I had to rummage through and okay first). Broke my heart to have to throw some of the prizes away.

I am noticing that a lot of parents take the "not my child, not my problem" attitude. It really hurts. It's easy to want to look the other way if it doesn't directly effect your child, but IMO, how would that parent feel if their own child accidently shared his food with my child and my child died? Is that what it takes to get people to "get it"? Scary.

Like I said, I don't expect people to stop bringing in nut products all together. PB is an easy and inexpensive lunch, high in protein, etc. But places like the YMCA, where kids are only there for 90 minutes max...I don't think it's asking too much. I suggested they only allow sippy cups and the facility provide simple snacks like a cup of goldfish. It's how they did it a different YMCA we attended. This is so much easier to monitor, and CLEANER. But nope, I guess it's easier to please the masses than one parent like myself. I took only Wesley to the YMCA yesterday to see for myself if they made any changes. There was ONE 8x10 sized sign above the sign-in sheet (couldn't even see it) stating "parents, please refrain from bringing in peanuts and tree nuts". Again, no one monitoring the food tables, no washing of hands when kids come in. Again, it's my CHOICE, it's my own risk to bring my kids there. I know they are hoping I will just move on and leave them to doing what they've always done, don't rock the boat per se. But I told them in my letter that Wil may be the first with a life-threatening allergy to nuts, but most definitely won't be the last. They need to do more to protect our kids before something terrible happens.

Thanks again for listening.

Oh, I belong to a Kids with Food Allergy email newsletter. Here is a great article I received this morning about looking for preschools, talking to caregivers....I wish I had read this before finding Wil's school.

http://www.kidswithfoodallergies.org/resou..._food_allergies

I think this forum is a great idea.

Kaitlin does not have any known allergies but her cousin is allergic to nuts. So I have always tried to make her sympathic to the allergies and asked her not to share her food around others as we just dont know if they woudl have a bad reaction to it. Sure she did tell me once she felt bad for him as he could not have a reese cup with her, but she understood and did not to mention it around him. I also have been very careful around holidays when giving treats to the nieces and nephews that they dont have nuts are are not produced on machines that have come in contact with nuts, difficult yes but I have found a few treats to give them. I do wish more parents cared and thought a little more before bringing in class treats it makes me sad when I have to see a child who cant enjoy it like the rest of the class.

Keep at it we need more education about it.

Yeah, I have been seeing that here too. Mine don't have allergies, BUT I am so careful about what kind of treats I send with the kids, because, really, what if? What if my kid ate peanut butter and touched something that some other kid goes to play with and that kid reacts? I would feel bad if it resulted in only a rash, I can't fathom how I would feel if it resulted in something worse. I guess I may be more community minded than some.

I think an allergy forum would be great.

I think it's a great idea for a forum too!

My kids dont have any allergies that I know of but you certainly have made me more aware. I hate to say it but I have always thought that you actually had to ingest it to get a reaction. I will definately be more careful and be sure to try to find out if anyone has allergies. Breaks my heart to see a child be on the outside because of this. I think a allergy forum if a fantastic idea. I hope it gets easier Rae.

Bumping my own post up! I would really love help on this...So anyone else interested???

Thanks!

I thought this was worth another look!

Sorry, I meant to add this forum earlier -- it's a great idea.

OK -- I've created the forum under Health/Fitness.

Thank you so much! I know when Jakob first started having issues, it was here in these forums where I found people going thru the same thing, and Karen, and Tracy (dansmom) at the time helped me understand and work thru a lot of it...
Its nice to know you are not alone.

THANK YOU SOOOOOOOOOOOOOOOOOOO MUCH!!!!