What are they allergic to OP? Do you think part of the restaurant thing is paranoia from you?

NP, and the "restaurant thing" is absolutely not paranoia. With some notable exceptions, restaurant staff cannot be relied upon to provide accurate information about ingredients or prevent cross contamination. A few years ago, I asked a server whether a vegetable dish was gluten free, and she asked, "Gluten - is that milk?" Yes, in DC at a "nice" restaurant. She had absolutely no idea what she was doing.

Kids have different levels of allergies. Some kids are so allergic that just one crumb or cross-contamination from a knife can kill them. Are you aware that people have actually died from anaphylaxis? Sometimes from cross contamination, sometimes from accidental ingestion. People make mistakes. A 15-year-old girl died a few years ago when a friend's parent accidentally gave her a Nabisco peanut butter chocolate chip cookie that had packaging almost identical to the "safe" non-peanut butter chocolate chip cookie. A high school student died when a teacher gave him a "safe" granola bar that contained nuts. EpiPens don't always work.

OP, it gets a little better in that your kids can be taught to read labels and ask questions. But it also gets a little worse in that they are doing more things without you, and you have to trust that they will read the labels and ask the questions and do what they are supposed to do.

My kids are older teens, and the type of food-based immunotherapy was just not available in this area when they were little. From what I understand, it's best to do when kids are young.

To the OP: I understand and see you.

Anonymous wrote:

Anonymous wrote:

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?

This is called OIT therapy. Schreiber allergy does this.

Should have added Schreiber is in Rockville and does peanut OIT that I known of but no believe others. Folks used to fly places because this was a “new” therapy that not allergists did/do. It’s a time consuming process on both the part of the child and the office.

She definitely does it for other allergens not just peanut. My child is doing milk.

Anonymous wrote:

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?

This is called OIT therapy. Schreiber allergy does this.

Should have added Schreiber is in Rockville and does peanut OIT that I known of but no believe others. Folks used to fly places because this was a “new” therapy that not allergists did/do. It’s a time consuming process on both the part of the child and the office.

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?

This is called OIT therapy. Schreiber allergy does this.

Anonymous wrote:Close this thread and get on the phone with your childrens' allergists IMMEDIATELY to start Xolair. I was put on Xolair for severe hives. I also had anaphylactic peanut and almond allergies. Over a 2 year period I have become desensitized enough that I can eat 10 peanuts with no reaction. I no longer worry about breathing in particles of nuts or accidental skin contact with their oils. Xolair works by binding to mast cells, which are the white blood cells that trigger allergic and anaphylactic responses in the body's immune system. I have had zero side effects and haven't been to the ER in over a year. It's a life changing medication.

+10000

Most of what's posted here is outdated thinking as of February of this year. OP, please see an allergist and know your choices, of which Xolair should at least be considered. Best of luck to you, the future is brighter.

https://www.fda.gov/news-events/press-announcements/fda-approves-first-medication-help-reduce-allergic-reactions-multiple-foods-after-accidental

I’m so sorry. That’s so incredibly hard. And I don’t know why people are jerks about this kind of stuff. I’ve got nothing except a virtual hug. You sound like a great parent to your kids. Good luck to you.

PP you are correct. OP Zolair is a game changer. Call Hopkins asap.

Close this thread and get on the phone with your childrens' allergists IMMEDIATELY to start Xolair. I was put on Xolair for severe hives. I also had anaphylactic peanut and almond allergies. Over a 2 year period I have become desensitized enough that I can eat 10 peanuts with no reaction. I no longer worry about breathing in particles of nuts or accidental skin contact with their oils. Xolair works by binding to mast cells, which are the white blood cells that trigger allergic and anaphylactic responses in the body's immune system. I have had zero side effects and haven't been to the ER in over a year. It's a life changing medication.

I also wonder if this is someone promoting FAI. But in any event the point is still well taken about the difficulties of having MFA.

It's much worse to actually BE the person with the food allergies. Think about that for a minute.

I posted about the friend going it the Food Allergy Institute. She looked at Hopkins. While the treatment sounds similar it is in fact different. Since I am not the one who spoke to the doctors and I have zero medical background I’m not the best source of information. However, FAI uses TIP vs JH which uses OIT.

Anonymous wrote: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

Yes, food is part of daily life multiple times a day and also part of almost every gathering. If there's an end of season party, would you expect food? Does your soccer team bring snacks after the games? Have you ever had people to your house and NOT offered them something?

I don't normally have to think about these things, but one of my kid's friends is a highly allergic kid. The general rule is to not serve this child ANY food ever. If there's a party, I buy a few packaged foods I know are safe (that I double check with the mom on!) so that child feels included. But often child will still only eat what the mom brings because that's what safest for the child. When this kid comes for a playdate, I don't offer a snack etc. (side note, this kid also goes to FAI in CA for treatment, but don't want to be accused of being a plant. I don't know why they don't go somewhere closer, but also if that was option I am sure they would have done that...)

Anyhow, food is huge in our daily lives. So yes I can appreciate how fraught it is for some parents to navigate.

Anonymous wrote: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

Yes, almost all the following have components of food included and because of the duration, food is usually served: School parties/events/celebrations. Birthday celebrations. Super Bowl parties. Easter. Thanksgiving. Christmas. July 4th and Memorial Day BBQs. Pool parties. Sunday family dinners. And oh jeesh the snack bags for rec soccer, rec football, etc.

The problem is that people who dont have allergies or kids with allergies seriously minimize how educated you need to be about food to navigate allergies. Like how many times I had to explain that eggs are not dairy. That being allergic to dairy products does not mean one is allergic to chicken. LOL.

We have friends whose daughter was allergic to pretty much everything: nuts, dairy, soy, seeds, eggs, wheat. She had failure to thrive due to this at one point. They found a doctor in nyc who uses similar micro dose exposure method and it worked great for her. Last I heard she can eat almost everything now at age 11.