Family members of highly allergic kids please help

naomi2

Sun, Dec 31 2023, 6:51 pm

I don't think there is a point to asked the baalas simcha to talk to the caterer. You can't trust a caterer with dozens or hundreds of dishes to not make a mistake and forget about a sesame ingredient. They also aren't feeling the same level of responsibility that you are. So even if you asked them, you couldn't trust that there would end no sesame. Also, someone could be bringing anything from home in their pocket or a snack for their baby etc.

amother

Sand

Sun, Dec 31 2023, 7:09 pm

naomi2 wrote:

There's a big difference between a cake with nuts somewhere in the hall and hundreds of sesame seeds on every table touched by everyone.

amother

Floralwhite

Sun, Dec 31 2023, 7:13 pm

Friends bar mitzvahs are a non starter, it’s too much of an ask.
For family simchas it really depends on the relationship you have, how much they understand the seriousness of allergies and also how much flexibility the Baal simcha has, like if those challahs are included in the caterers package and now they have to get different ones is that a lot more money or effort etc.

amother

NeonGreen

Sun, Dec 31 2023, 7:30 pm

In my experience, even when people go out of their way to make it safe, it’s STILL not good enough.
Like, they talked to the caterer about not having sesame - except for this one item.
Whatever, I have a few examples of times when people did try to accommodate but it didn’t work out.
It’s really tricky.
And for your son with an airborne allergy, that’s so so much harder.
I dont know what to advise.

amother

Midnight

Sun, Dec 31 2023, 7:35 pm

As a mother of a child with multiple allergies, some severe, I want to empathize. It's so hard watching a child miss out and feel left out for something so trivial yet so significant all at once.

Practically speaking, if he starts feeling off and leaves the room immediately, is he able to stop the progression of his symptoms? If that's the case, he may want to try out a couple of events and see how it goes. Not to eat anything, just to attend.

amother

Sun, Dec 31 2023, 7:40 pm

amother Midnight wrote:

Thank you for empathy!
It's a good question, I'm a bit nervous as I'm on the women's side and he is on the men's side.. but maybe

amother

Sun, Dec 31 2023, 7:42 pm

I really want to thank every one who is taking the time to respond and share your thoughts! It's a struggle dealing with all of these things- and I worry- will he ever be able to go to sleepaway camp or a yeshiva away from home?

I really hope the medicine mentioned above is approved and works.

amother

Floralwhite

Sun, Dec 31 2023, 8:02 pm

amother OP wrote:

Our allergies are not as severe but I like to say that ds needs to stay in local yeshivas forever because it’s way easier for me to feed him at home then send safe food to a far away dorm.

amother

White

Sun, Dec 31 2023, 8:07 pm

amother Obsidian wrote:

It's true that whole sesame is much, much less potent than processed sesame. That doesn't mean it won't cause a reaction when ingested. With some people it will.

This. Dc's allergist said that something like 70% or even 80% of people (children?) allergic to sesame seeds can actually ingest something like 50 sesame seeds with no reaction at all. Crushed sesames, such as halva or chumus, are a different story altogether.

He wanted to do a tolerance test on dc in the office to determine if dc can handle a few sesame seeds, as this would remove a huge amount of anxiety around the issue.

amother

Mustard

Sun, Dec 31 2023, 8:07 pm

amother OP wrote:

Has anyone here done allergy desensitization and could share their experience?

There are a bunch of people on instagram who have done this or are in the process. I don’t know if any Jewish people but this mom in particular seems to be really knowledgeable and helpful. https://www.instagram.com/food.....2ZA==

amother

Sun, Dec 31 2023, 8:19 pm

amother Mustard wrote:

Thank you!!

amother

Magenta

Sun, Dec 31 2023, 8:21 pm

amother OP wrote:

Has anyone here done allergy desensitization and could share their experience?

So that's the thing. This medication makes allergy desensitization mainstream, finally. And safer, and less uncomfortable. It has been well studied the past few years in many studies.

amother

Sun, Dec 31 2023, 8:37 pm

amother Magenta wrote:

So that's the thing. This medication makes allergy desensitization mainstream, finally. And safer, and less uncomfortable. It has been well studied the past few years in many studies.

Wow. This is incredible. Davening that it is approved and works.

amother

Sand

Sun, Dec 31 2023, 8:55 pm

amother Trillium wrote:

If that’s unsafe you keep him home. To hell with what your family thinks. Your sons life comes first.

Tell me more. It sounds simple and you say it but it's not simple in real life.

amother

Lawngreen

Sun, Dec 31 2023, 9:02 pm

Dc has been on Xolair injections for a couple of years. We have seen some progress in lessening of sensitivity, including the nut allergy (dc can't eat sesame, but has not had other problems with it.)

amother

Sun, Dec 31 2023, 9:25 pm

amother Lawngreen wrote:

Please tell me more.. Does it not work for sesame allergies?
Can he eat nuts? How frequent does he need injections?

amother

Calendula

Sun, Dec 31 2023, 9:35 pm

amother OP wrote:

Has anyone here done allergy desensitization and could share their experience?

I am currently doing the allergy desensitization with my highly allergic child. I was very nervous to do it, but my pediatrician and allergist thought it was a good idea. I mainly decided to do it because of what you are describing. My child was missing out on so many simchos, camp and school events etc. He'd have to leave events/ friends houses early due to hives or feeling unwell because he is so allergic, even smelling it causes a reaction. If someone came to school and had peanut butter for breakfast, he'd have an allergic reaction from smelling it..
BH the process is going well. We're about a quarter of the way through so far. He's tolerating the tiny amounts of allergen and we're slowly building up to more. He'll have to ingest these allergens every day of his life iyH in order that his body keeps being tricked into tolerating it. He is feeling so empowered and looking forward to not being afraid of a reaction all the time

amother

Magenta

Sun, Dec 31 2023, 9:44 pm

amother OP wrote:

Please tell me more.. Does it not work for sesame allergies?
Can he eat nuts? How frequent does he need injections?

Was he on this as part of a research study or through a traditional allergy clinic? Was it presented as experimental? Do you know if he is on a low dose? I have heard that there are two modes of giving the xolair, depending on what the ultimate goal is.