Peanut Allergy and Family

Hi J.,

Your post was multi-faceted, but a few things popped into mind.

How educated on your daughter's allergy is your family? I ask because sometimes, our friends and family don't always "get it". Something I've noticed myself is that I have to ask/re-ask when one of my son's friends comes over. She's got an allergy to nuts and I can never remember off the top of my head, so I ask her mom every time before she is dropped off just to be safe. ( I also wipe down everything a second time, and make sure my son doesn't eat nuts a couple hours before she's due to arrive, etc.)

You say " I wish we had just not gone now. " Sometimes, when our kids have severe allergies, this is going to have to be an option, whether families understand or not. I know firsthand how hard family events are: I am allergic to lactose and feel like a detective, because I have to ask about everything. I now take my own food.

It may have been more than your daughter could bear, too, to see other people getting to have sweets/cake and not be included. This might have been another reason to gently suggest to your family when they ask why you couldn't come. "It's just too hard for our girl to see everyone eating cake, and not get some." Another idea would have been to leave a bit before the cake, but discreetly.

One thing I'm going to throw out here: I think a support group for parents of children with severe allergies might be a good place for you to seek some insights and advice. I've noticed a few of these sorts of posts recently here on Mamapedia and want to say that while moms would like to be supportive, I've seen some advice that is more about the emotional dynamics between the adults in the situation than it is about the very serious allergies of the child. There is a myriad of issues you've addressed in your post that I think other parents in your situation can relate to, wheras many of us just can't, and might tend to become judgmental. That's why I think another group or forum might be a safer place to take this question.

I hope you find some peace about this.

H.

Two thoughts:

A: For other parents dealing with this, if you haven't already, google "peanut desensitization studies." Here's one of many hits: http://www.medicalnewstoday.com/articles/142336.php The short message is that many kids can increase their tolerance with carefully managed exposures. Please look into this for your children's future ability to socialize safely.

B: People REALLY don't get the suffering or hazard if they don't experience the symptoms themselves. I have severe chemical sensitivities, and my social life has been extremely limited for over 20 years. Even when I go to my few "safe" venues, I sometimes have to leave when somebody forgetfully shows up wearing cologne, common hand creams, hair products, or traces of fabric softener on their clothes. That can be uncomfortable and awkward for all. They forget. They are even annoyed at my limitations. They just don't experience the asthma, headache, nausea, confusion, panic, or three days without sleep. They can't really "see" it and certainly don't feel it, so it never becomes quite real to them.

That's the simple reality of it. Do your best to educate people politely (blaming or attacking will get you nowhere), educate your daughter about people's lack of awareness, and get her treated for that allergy if and when it becomes possible. You have my sympathy and understanding.

Mama,

I am in the same boat but with my husband's HUGE family (he is the 5th of 5 siblings, each sibling has numerous children)-- parties are a HUGE distress for us! Our daughter is 3.5 and also has a SEVERE peanut allergy like yours. She also has egg, milk and fish to a lesser degree -- mostly eczema/hives. We have tried -- over and over and over again to tell them to make things safer. When we go to the lake house altogether, they ban peanut butter and nuts in the house but when it comes to normal parties, some of my husband's sisters get lazy and get store bought cakes (there is not a bakery in the Chicago area other than 1 that will guarantee peanut free and they want over a $100 for a 1/2 sheet cake -- not reasonable) that have peanut warnings. We usually avoid the dessert by leaving before or one of us leaves the room or refrains from dessert that day. We had two occurrences recently that left us bewildered - 1) in September my sister in law served ice cream that had little peanut butter cups in it during a birthday party while we were there (WTH - can't they just have it any other day) and it had some innocuous name like moose tracks. I didn't know till I bit into it (I am pregnant w/ #3 and avoiding peanut products)...we left immediately. Then for our family gift exchange in mid-December my MIL served a pecan "supreme" pie that was store bought -- it had flippin peanuts sprinkled ALL OVER THE TOP and THROUGHOUT. I was ticked. The next week a 13 year old girl DIED in Chicago Public Schools from exposure to Chinese Food that was promised to be peanut free (whoever made that promise is looking at huge lawsuit). My husband sent that article to his ENTIRE family and told them that THIS is why it is important to abide by our wishes and why we get so concerned. It is vitally important to avoid such tragedies. I would suggest it -- google it and send it yourself. Mistakes happen BUT could they really live with themselves if something they did caused your child's demise....I think not.

Best wishes and lots of HUGS!
A.

hi J., i feel for you. i have had a nut allergy my whole life, though not as severe as your daughters. i dont know if my kids are allergic, i was told by the doc to just treat them as if they are, so that is what i have done, though i think i would know by now. people dont care/understand in general. they just dont. they think that if something doesnt have a big nut sitting on top of it that its safe. or that you are being dramatic. i dont get it. not only waiters and waitresses, but friends and family too. the sad reality is that it is completely up to you. you need to monitor your daughter, and you cant depend on anyone else. we were at a party on Christmas, all family, wonderful people, they all know the deal. yet, a big tray of nuts right on the table. i just smiled and walked over and said, you dont mind if i move this away, do you? and then just moved it out of the room. and you need to read every label. and if there is no label, she cant have it. the end. im sure you know all this, you live it, im sorry. im just done apologizing for it, and i am certainly done worrying about others feelings when they cant take a second to worry about my kids. it will be an inconvenience for you, thats the way it is. we are going to a friends house tomorrow who has a son that is fatally allergic to EVERYthing -- nuts, peanuts, dairy, wheat, soy. he quit his job to stay home and make all josh's food from scratch. what can you do? you gotta do what you gotta do, thats all. be as proactive as you can. have extra special safe goodies for her with you all the time, especially at parties, so she has her own stuff. and if other kids are eating it and playing with her, i would wash the other kids' hands myself. nobody is going to do it as well as you will. do it with a smile,,,, the "you dont mind if i _______" as you just go and do what you need to do with a smile is my best advice. good luck

I stopped reading partway through.
This is indeed a very difficult situation.
The people who don't get it JUST DON'T GET IT.
And nothing you can say or do will get it through
to their (resistant, hard) heads.

I read a story some years ago.
Don't know if it's true or just an urban myth.
Wherein an adult had a peanut allergy.
And her (hmph!) friend decided to prove that it was all in her mind.
And gave her something to eat that she assured her
did NOT have peanuts in it and the allergic person DIED.

Now, as I said, I don't know if this really happened.
But it COULD happen.

The people who don't understand WON'T understand.
Until, perhaps, they see someone die.
Or at least until they see someone being rushed to the hospital
with an oxygen mask and paramedics doing whatever paramedics do.

So . . . . . though I totally sympathize with your situation,
in my opinion, it is a waste of your time and energy
to attempt to explain to the various relatives
just what the seriousness is of your daughter's peanut allergy.

Your dad "forgetting" is beyond my ability to comprehend.
It seems to me he should have known better.

In any event, please use your energy to take care of your daughter
and other children. Do NOT allow yourself to react to the behaviors
of the ignorant people in your family who JUST DO NOT UNDERSTAND.

Their opinions of what you should or should not do
are as meaningful as . . . . .
as if they had asked you to walk on a tightrope 20 stories up
carrying a little umbrella.
As if they had asked to you solve the Israel-Palestine situation
with one hand tied behind your back.

They are totally INCOMPETENT and UNSUITED
to have any input into your situation.

Hang tough, mom!!

Wow. I have never heard of something so severe to peanuts! I am so, so sorry, that is a lot to deal with for both of you!! I think after this last issue with your mom's b-day maybe you need to have a heart to heart with your mom, dad, and siblings. Tell them straight up the issue (even though I'm sure you've done it a million times) and retell the Butterfinger story from school. Tell them that you want to come to family bday parties, etc. but here's the deal...they MUST get cakes that are peanut free and you can direct them to a bakery that complies with that. Maybe you could even offer to chip in $10 towards each cake for their efforts or something, if you can afford it. I would explain that this is hardest on the 5 y/o b/c she doesn't understand but as adults, and as your family, you're asking them for help. I think you have to explain it in a way to them that makes it sounds like you really need them, which of course you do, but so that they can feel like they know how to help, what to do and that they are really helping you when you need it.

Luckily, I haven't had to deal with food allergies with my son. As others have said, those of us not in the same situation really don't understand the stress you and your daughter are under at all times. The only suggestion I can think of, is to make sure you have "special" treats for your daughter when you are in situations where you know the food isn't safe for her. Make some cupcakes and freeze them. Thaw one or two out and decorate them and take them with you to birthday parties so she will also have cake and not fee left out.

I am so sorry that you have to go through this.

I think that the truth of it is that you aren't ever going to get people to be as vigilant as you are, even family. I could give you lots of reasons why, but the fact is that they're not. Imagine that your daughter was in a wheelchair - would you expect that everyone in your family move to a handicapped accessible house? I don't say that lightly - my father is in a wheelchair, and when we moved, we had to decide how much being wheelchair friendly would factor in to our homebuying decisions. Ultimately we live in a house that he can get into, but my sister does not. I know this isn't a life-or-death situation. Still, people do the best they can taking into a wide variety of needs. Right now, your main concern is protecting your daughter.

As much as this would be difficult, I think that you should explain that you can't socialize if food will be present. If her allergies are so severe, it will impact her social life. As you know, she won't be able to go to friends houses, eat at restaurants, etc. It's not fair. It's terrible. But other people aren't going to stop eating out, stop wanting to have playdates, etc. You'll have to find ways to get around her allergy without expecting everyone else to change.

I really don't mean to be harsh. Again, I can't imagine what this must be like for all of you. And I agree with the poster below who suggested a support group. I just thought another perspective might be helpful. I hope it was.

Sounds like you need to have everyone over and explain how severe this allergy is when things are calm. Explain how much you want to attend things but that her health has to come first. Offer to host everything or assist in food prep/ordering to assure there isn't a problem. Tell them now that these have to be the conditions or you can not attend because attending otherwise is both risky and chaotic (and ruins it for EVERYONE).

Is there anything you can give your daughter to help prevent such a sever allergy when she is out and about (not that you would purposely put her at risk but you can't shield her from everything)?

Could you have washed your neice's hands and mouth and then your own?? I get that you were nervous and all that. But for next time would that help?

Is there not some peanut allergy ad counsel that can make a video of someone dying from a peanut so people will understand? To be honest with you, not ever having been around someone with an allergy i don't really understand it either. I'm guessing your family needs some education.

I would guess this type of social problem will happen again and again for you. You need to figure out a calm way to remove yourselves from a venue that you suspect will set your daughter off so you don't hurt the hosts feelings or make your daughter feel as if she's a misfit.. Having a peanut allergy makes you get treated like a smoker does I suppose (Ive gotten in trouble on here before for not being sensitive to peanut allergies). Some people become disgruntled with smokers, waiting on smokers, smelling smokers. And some people become disgruntled when they have to double check ingredients that they wouldnt normally have to think twice about, make sure things are clean, make sure everyone washes their hands and mouths if they may have indulged in some possible peanut proteins. You and your daughter are in a minority group BUT the schools are becoming peanut free and so at least you are in a protected class. I would just figure out how to do escape plans, make sure you have her tested enough so that if her allergy disappears she can be free of the nuisance sooner than later. I know lots of people grow out of these allergies..... I wouldnt prolong it if it's possible to test for resiliancy.
If you exited in a selfish frenzy and caused a scene for your family and your daughter you probably should appologise and just explain that you are trying to figure out how to live in this world under these conditions and you just dont have it down pat yet. If you would have communicated with your dad better this wouldnt have had to happen. So, I would say that you do need to communicate with others better and if they don't want to make things safe your child than you just have to stay away.... they will get the hint soon enough when they miss you and see how serious this is for you.

Wow! I do not understand how your family members do not get the seriousness of your daughter's allergy especially after you have told them! I really sympathize with you as well, it must be so scary for you to send her to school, a friends house, etc. Why people do not take this allergy seriously is beyond me. I am assuming she always carries an epi pen with her. Correct? My friend's son wears one on his waist at all times due to a peanut allergy. Although I totally get the seriousness/deadliness of this allergy, and she needs to understand it too, I am sure you do not want her to grow up feeling like a freak or living in a bubble. This is manageable and although it really stinks for her (and you) it should not rule your life. My son was born with various brain deformities and died as an infant. I am not making light of your daughters situation but I wish a peanut allergy was the extent of my son's issues. Put this in perspective... There are many worse things than this.
PS Please do not blame yourself for this allergy. You have only ever wanted the best for your child I am sure. It is just not productive for your to blame yourself or ask why? Some things in life simply have no explanation and I am sure you would never have eaten peanut butter while pregant if you knew this would be the outcome. My doctor never warned me about eating PB. How about yours? My niece and nephew do not have this allergy even though my sister ate peanut butter everyday while she was pregnant.