I'm so sick and tired of food allergies

[Anonymous]

It gets easier when you just stop expecting society to be inclusive and start excepting your challenge head on. Take food to every event and teach your kid how to interact with the world the way it is in a safe way. Don't expect people to change and they won't disappoint you.
I'm sorry you have to deal with this, but you need to accept people as they come and maybe they will accept you and your son as you come.

[Anonymous]

Anonymous wrote:Its a tolerance induction program, where the kids get a very micro amount of the allergen (amount is cutomized based on each kid) and then over time increase the amount. This is an overgeneralization....but the gist of the method.

I have a couple friends with kids with food allergies who do what sounds to be a similar program through Johns Hopkins, which is much closer than LA. Is there some reason people would fly cross country rather than drive to Maryland? Or maybe some posters are closer to the west coast?

[Anonymous]

Anonymous wrote:Its a tolerance induction program, where the kids get a very micro amount of the allergen (amount is cutomized based on each kid) and then over time increase the amount. This is an overgeneralization....but the gist of the method.

Oh, okay. You can find specialists in the DMV who do this method, btw. I know several kids who have extinguished peanut and egg allergies using this approach. It's a pain with all the appointments but it's worth it if you can get rid of a severe allergy to a very common allergen. I don't think it works for everything, but it can make living with allergies much more manageable knowing your kid won't go into anaphylactic shock if someone at the playground has a peanut butter sandwich.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Its a tolerance induction program, where the kids get a very micro amount of the allergen (amount is cutomized based on each kid) and then over time increase the amount. This is an overgeneralization....but the gist of the method.

I have a couple friends with kids with food allergies who do what sounds to be a similar program through Johns Hopkins, which is much closer than LA. Is there some reason people would fly cross country rather than drive to Maryland? Or maybe some posters are closer to the west coast?

Yes, I'm the PP who asked what the deal was and now I'm more confused. I know multiple families who have done the program through JH and this is the approach they use. It's onerous because it's a lot of appointments and you often have to pull kids out of school for them, but certainly easier than flying across the country!

[Anonymous]

I live in california, so it makes sense for me to take my son to the food allergy institute.
The dr that organized/founded the institute has a very thorough method at identifying allergens and a comprehensive protocol. Many different markers and proteins are looked at.

My kid was 3 when he started. Was anaphylaxis to milk, and now can drink it without limit. Same with egg and chicken. Working through nuts currently.
It haa made a world of difference to our family and has given me more peace of mind to know that one day, I won't have as much anxiety as I did about his food allergies and safety.

[Anonymous]

Anonymous wrote:I live in california, so it makes sense for me to take my son to the food allergy institute.
The dr that organized/founded the institute has a very thorough method at identifying allergens and a comprehensive protocol. Many different markers and proteins are looked at.

My kid was 3 when he started. Was anaphylaxis to milk, and now can drink it without limit. Same with egg and chicken. Working through nuts currently.
It haa made a world of difference to our family and has given me more peace of mind to know that one day, I won't have as much anxiety as I did about his food allergies and safety.

I have friends in Boston, NYC, and DC who are all making the cross country trips there, so there has to be something to this center, specifically.

[Anonymous]

How old are your kids? My oldest daughter has a tree nut allergy (and she reacts to other things as well, but tree nuts have been the hard one for us), and she had a few very scary reactions when she was younger. She is 23 now, but pretty early on, she started reading labels and making sure that people knew that she couldn't eat anything tree-nut related.

I think it's discouraging that your kids have been told by trusted adults that some foods are safe when they're not; in m experience, there are many who haven't experienced food allergies and don't understand that even a trace can cause a serious reaction. Since there are seven allergies involved with your children, maybe the PP's suggestion to have them bring their own food to parties and other activities would be a good solution for now. (That depends on how young they are, of course, since it can be hard for kids to resist certain foods.)

I think it will get easier as your children grow older, but at the same time, it is a little scary to feel that you're rolling the dice if you go to a restaurant or have a home-baked cookie. I think that the new programs are also very promising, at least for some allergies.

[Anonymous]

Anonymous wrote:What are they allergic to OP? Do you think part of the restaurant thing is paranoia from you?
My kid has a friend allergic to dairy, nuts, shellfish and sesame seeds. It’s restrictive but we’ve had her over for dinner and I’ve taken her out to eat. We went to Potbelly last week. The friend ( she’s 12) told them she has food allergies and the person making the sandwiches changed gloves and got a clean tray out to prep on. Kid asked if the bread had sesame seeds, they checked and said no. Kid ordered an original sandwich on white bread with turkey, pastrami and lettuce. She was so happy to come out to eat with us.

Geez lady. Potbelly serves PBJ from the same surfaces and same knives as that turkey sandwich. You took a big risk with someone else’s kid.

Every allergic kid is different so please don’t butt in with advice based on your kid’s “friend.”

OP - I am sorry. One of my DCs has a ton of allergies and as she’s gotten older she also has some separate but equally horrible GI issue (maybe Crohns but we are still trying to figure it out). So even when she’s not allergic she has issues with food.

I do think in their lifetime there will be a cure. Maybe not ours though.

[Anonymous]

My kids had anaphylaxis to peanuts and treenuts, including multiple hospital trips. We were told neither would be a candidate for peanut challenge. But at age 15, we revisited, did more skin/blood tests, and to the surprise of their allergist, both were candidates for peanut challenge! They can each now have small number of peanuts and each has an addition tree nut (though not same) they can tolerate. All this to say don’t give up on food challenges. Revisit every few years. Good luck.

[Anonymous]

Dr Wood at JH does this treatment but there is a year long wait to get in to see him.

[Anonymous]

Anonymous wrote:It gets easier when you just stop expecting society to be inclusive and start excepting your challenge head on. Take food to every event and teach your kid how to interact with the world the way it is in a safe way. Don't expect people to change and they won't disappoint you.
I'm sorry you have to deal with this, but you need to accept people as they come and maybe they will accept you and your son as you come.

This 100%. Any situation where you rely on other people to be educated will likely leave you disappointed or your child in danger. People are uneducated about food, food prep, and the immune system in general.

[Anonymous]

Anonymous wrote:What are they allergic to OP? Do you think part of the restaurant thing is paranoia from you?
My kid has a friend allergic to dairy, nuts, shellfish and sesame seeds. It’s restrictive but we’ve had her over for dinner and I’ve taken her out to eat. We went to Potbelly last week. The friend ( she’s 12) told them she has food allergies and the person making the sandwiches changed gloves and got a clean tray out to prep on. Kid asked if the bread had sesame seeds, they checked and said no. Kid ordered an original sandwich on white bread with turkey, pastrami and lettuce. She was so happy to come out to eat with us.

If you have anaphylactic reactions to many foods and it includes in the air and on surfaces, you cannot just say "I have allergies, use a clean tray". If the allergen is in the restaurant, the kid could go into anaphylactic shock. So not worth it

[Anonymous]

Are activities that food centric? I'm thinking about activities DS does with his friends, either that a parent hosts or we do, and none revolve around food. Sure, food may be a part of it (like a birthday party) but adjustments can be made because of an allergy

[Anonymous]

My DC who is going to college next year has a large number of allergies and I totally get it. DC has to go sit at prom with other kids and eat white rice. (Of course DC will eat beforehand). It is very limiting. We have been a patient of Dr. Wood for years but even he says given DC's number of allergies, doing OIT would not be life changing because there are so many other restrictions. Looking into Xolair but seems untested and I am concerned about the cancer warning?!

It sucks. But we do go out to eat frequently BTW. Just have a group of five or so restaurants and that is mostly it. DC does go out with friends to eat, just sometimes gets a drink or a veggie. DC hates it but is used to it.

[Anonymous]

Anonymous wrote:What do they do at the Food Allergy Institute that can't be replicated locally? Is it medication or exposure therapy or what? If it's worth so many people flying across the country 4-5x a year, then surely it's worth it for some local organization to create a similar program.

That's not something that would be feasible for my family without extreme hardship. Obviously severe food allergies are themselves an extreme hardship, but all the more reason why it's hard to layer something else on.

I am almost starting to wonder if this was a baited post to advertise for the food allergy institute with so many commenting they know about it and sharing the link....hmmmm