I'm so sick and tired of food allergies
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Anonymous
| Both of my kids have extremely severe food allergies (anaphylaxis) to 6 of the top 9 food allergens. They haven't had most normal foods kids eat, never been to a restaurant, our grocery bills are so expensive because they can only eat certain things, and miss out on a lot of fun experiences with their friends because of their allergies. We've tried food challenges but they've both had bad and almost life-threatning reactions, and I know they'll most likely have to carry this with them for the rest of their lives (and most likely their children's lives.) It's just sad that our culture is so heavily food-focused, and most times when we ask for allergy-friendly alternatives when out with friends or at an activity, they just end up getting excluded. Misinformation is also rampant: many people think its no big deal or that they're just lactose-intolerant, and they've been offered things that they were told were "safe" for them to eat, when they actually want, from adults they trust. Just needed to vent a little. Does it ever get better? |
Anonymous
| I’m sorry that your kids have so many severe allergies. My best friend’s son is similar. She often tells me what a struggle it is to keep her son safe and live a normal life. He is not only allergic to common things like nuts, dairy and eggs but to chicken, beef, sesame, many fruits, etc They cannot even eat a meal at a friend or family member’s home when invited because his diet is so limited and there’s the risk of cross contamination. School is terrifying too. He reacts to allergens on surfaces and in the air so it’s not enough to not eat them. In an effort to get some freedom from fear, he has started a program at the Food Allergy Institute in CA. The program is very involved and requires flying to CA about every 3 months so it’s a huge undertaking but it has changed his life. |
Anonymous
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Ignore the idiot PP.
My kids don’t have food allergies, but I want to commend you, it sounds so scary and exhausting. I hope that some amazing technology comes out that helps your kids not have to have those allergies forever. |
Anonymous
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Anonymous
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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. |
Anonymous
| I hear you, I see you, and it sucks. I’m sorry. We have a couple major allergens but 6/9 is a lot obviously. And I didn’t appreciate how food infects pretty much everything until I had a kid with a food allergy. |
Anonymous
| Why are there so many food allergies all of the sudden? |
Anonymous
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OP, I'm so sorry. Even one anaphylactic event carries so much weight.
There's no one path, but I'd strongly recommend you looking into Xolair given the experiences you describe. There are several threads in "Health & Medicine" including this one. https://www.dcurbanmom.com/jforum/posts/list/1191449.page#27020433 |
Anonymous
I have two kids who are also in this same program. They have multiple food allergies. We fly to LA 4-5X a year and my kids are on the way to complete food freedom. It's definitely not easy but I think it's worth the cost and effort. I would encourage you to explore this option. |
Anonymous
Some may be environmental, but as OP mentions talking about future grandchildren's lives, there is likely a genetic component. We have fortunately advanced medically to where people with these kind of severe allergies can live long and happy, "normal" lives that would have been unthinkable 100 years ago which is fantastic, but also means these things are passed on. I'm sorry OP, it's really hard. I have a friend whose son has 9/9 of the big ones and like 30+ others with anaphylaxis response and it's so extreme she has to homeschool. They're also doing to Food Allergy Institute and flying to LA to try to get even some minor relief. It's very scary and impacts every aspect of the family's life. |
Anonymous
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My younger son had a large number of allergies. He has overcome so many. We are still working through wheat and peanut.
Take a look to see if there is a place/dr similar in your area: https://foodallergyinstitute.com/ |
Anonymous
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I’m sorry. I suddenly developed several as an adult (beef, pork, dairy) also with anaphylaxis and it is so scary. I can only imagine dealing with it with a kid.
I hope they outgrow some and medical advancements help tackle the rest soon. |
Anonymous
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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. |
Anonymous
| 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. |
Anonymous
| Can adults with food allergies do the program you all are referring to in LA? |