Gifted Issues Discussion homepage Forums Twice Exceptional Food allergy case

The lifelong sequelae of dealing with a bone marrow transplant as a reboot seems to offset gains in food allergy, honestly.

The other thing to bear in mind is that people have trouble enough getting BMT's when they are literally going to die without one.

There is a lot of experimental treatment now crossing over to clinical practice. Some of that is quite controversial at the moment-- most of the leading experts in food allergy (worldwide, mind) believe that such oral desensitization protocols are dangerous and not ready for clinical practice, but they do seem to work well for some (maybe even majority) percentage of patients.

There are troubling reports emerging from the research studies, though, that indicate that not everyone can hold tolerance, and that it may NOT be 'normalizing' for the immune system in all patients-- even among those that can tolerate the protocol in the short term (well, it's like allergy shots, so it's pretty long term as treatment regimens go).

Interesting stuff, to be sure. But scary, when you dig into it-- I feel very fortunate that we have the kind of allergist we do, and that he is on a first-name basis with some of the top researchers in the world. He picks stuff up early, and warned us off of this (in light of my DD's particular history, she seems on an anecdotal basis to be a likely disaster under such a protocol) about four years ago when it started to get hot with clinicians eager to to SOMETHING for patients.

MoN, that is precisely it:

How difficult is it to tell your child that even if your teacher assures you that the food is verified safe, it still might not be safe. Even if the teacher feels like she went through a lot of work for YOU and you feel like you should eat it, you go ahead and hurt the teacher's feelings and decline.

You learn that you must do this not only with teachers, coaches, Santa Claus, etc. etc. etc.

but more than occasionally, even with VERY close family friends-- and family.

You can imagine that HG children are pretty good at connecting the dots there.

The problem is that to a 4yo, it's a pretty horrifying set of bare-faced facts to actually process, what this actually MEANS.

I hope no one was hurt.

I'm not sure I understand who the teacher was calling? Was she calling parents or food manufacturers or food suppliers? Students with food allergies should have a list of safe foods on file at school. I would trust parents to know what is safe for their child. The gotchas come with things like calling a food supplier (for instance, our school district can't guarantee ingredients in some of the products they use because the supplier they buy from changes ingredients without informing them). Things like that. Or perhaps she was talking to people who weren't invested in giving a correct answer or who don't understand food allergies - and the reality is, those people are out there, so those of us dealing with food allergies have to do our best to make sure we're verifying food safety ourselves as much as possible or that a reliable person is making the determination. Which is why I'm wondering what "calling around" meant?


Our schools have procedures re what foods can be offered, what foods are restricted based on allergies in the classrooms, and what foods are restricted based on health initiatives for all students (our schools have limits on sugar content etc for classroom treats and parties). I haven't seen an official procedure for how to verify a food *doesn't* contain an allergen. Maybe I'm the outlier here, but that's somewhat ok for me as a parent of a severely IgE-allergic child with multiple food allergies. My dd knows how to read labels, and how to assess whether or not the label is trustworthy (i.e. is she reading the label on a packaged item that's never been opened or is she reading a label that a parent wrote on a home-made food item, and is that a parent she knows would include everything or someone she doesn't know well so she might not know how allergy-aware they are). Younger students aren't going to be able to make those assessments, but there parents are able to. JMO, but I wouldn't want the decisions about what is safe or not left up to my children's teachers, especially in early elementary. Too much responsibility for the teacher, and to be honest, and although not many, some teachers just don't care and/or don't believe food allergies are real.

I think one thing that has caused the largest challenge for me (as the parent is a societal thing - people *want* to be able to give children food as treats, as reward, as whatever, and they want it to be inclusive. It's so easy for me as a parent to just send in food for my dd and not have to even be in the situation with a class party where food is being given out and a teacher needs to make sure it's "safe for all". Well-meaning people want to be inclusive and that's wonderful, but otoh my dd is very used to bringing her own food and she's downright ok with it.

(sorry I started to ramble there!)


Well - it may feel difficult when you're starting out and your child is young, but it's also a process that I suspect most kids with food allergies or health challenges go through - eventually our kids will figure it out for themselves that a teacher's decision can't always be trusted - whether it's due to the best of intent but lack of information or whether it's due to lack of caring on the part of the teacher (or whoever). My dd started noticing those nuances from the time she was in kindergarten and she doesn't implicitly trust any one person or any one situation (except for parents and very close adult friends she knows well). And that's been good for her in terms of survival tactics - she knows she could die and she's taking care of herself. I think it may feel sad or tough for people like myself as a parent who haven't lived with that reality, but it's simply a part of her life to her. Hope that makes sense.


Yes, you decline. You always decline unless you are 100% certain it's safe. You can decline politely, nicely, graciously - and you can teach your child to do so. But that's part of what you do when you're living with a food allergy.


I wouldn't even say that's good enough - I would only trust what I saw on a label on the food's package from the manufacturer. Websites can be out of date, and ingredients do change. Just ask my dd about that

Best wishes,

polarbear

Totally horrifying. OTOH, I think that one of the singular best things that ever happened with our dd on her food allergy journey was when she accidentally (as in, turned the tv on when none of her parents were paying attention) watched a documentary on PBS where a child had an anaphylactic reaction and almost died... that scared the heck out of her but also gave her the reference point that really helped her become a very aware and conscientious protector of her own health at an early age. Now that she's almost a teen she is far and away her own best advocate - even more solid than her very stubborn and not easily intimidated mom

polarbear

Way too big of a risk from my perspective. I suspect my dd would tell you way too big of an inconvenience too! I think that although there are times that dealing with food allergies is inconvenient and can be time-consuming (like today we're having a bit of a "time" preparing for an away-camp for dd who has some rather unusual foods she's allergic to), but in day-to-day life it's just one of those things for her that's not really ever on the radar - she eats what she eats and avoids what she avoids but doesn't have to invest much time thinking about it. Its sorta like putting on her glasses in the morning and brushing her teeth to make sure nothing gets in her braces - part of her reality but not something she thinks consciously about much.

polarbear

Yeah-- the real problems for us (socially) are almost always as a result of one of two things:

a) people who just plain don't give a rip about inclusion-- or even safety and eat whatever they want, whenever and wherever they please,

and, paradoxically--


b) those who are AGGRESSIVE about feeding DD (or me) even in the face of gracious, gentle, and steadfast refusals from us. They make us go there* with them.

* "there" being "No, as a matter of fact, much as I like you-- NO way am I putting my life in your hands, because I don't trust you that much."


There is no way around the fact that this is the baseline issue. I don't trust most people with my life-- and neither does anyone else, really, when you stop and think about it.

But insisting on feeding someone like my DD? This is like being aggressive about doing some kind of surgical procedure on her... I mean, how vastly intrusive and inappropriate would THAT be?

Sorry-- I know that you have complete confidence in your ability to perform a tonsillectomy, but please understand that as much as I like you... um... I'm still thinking this doesn't make you a surgeon!!

The difficulty is that EVERYONE eats, and most people cook to some degree, which in their minds translates into an ability to do this perfectly well.

They're wrong. At least with people who are at the most sensitive end of the distribution, this is NOT a beginner project, finding/preparing/checking on safe food. We don't even have some allergens in our house at all-- and my DH and I are both highly trained chemists with decades of laboratory experience. So look, if WE think that even WE can't manage it... why on earth would we trust someone else to safely prepare food for DD in an environment that we wouldn't trust ourselves in??

Hint: we wouldn't.

So yeah-- no offense to people in my life who have sometimes gone to extreme measures to try to feed my DD (new pans, buying new flour, etc.), but I know just how easy it is to make a mistake in a single microsecond of inattentiveness.

The level of continuously changing complexity for someone like my DD is hard to overstate-- for example, even from manufacturers we trust to label well (we can't just rely on what labels say, even-- not mostly), that can change in a heartbeat.

An example:

When Barilla began test-marketing their egg-containing pastas (the whole grain varieties) about 7-8y ago, my DD knew. How? Well, the label hadn't changed, but she started getting random hive breakouts from some boxes of the regular (non-eggy) pasta. This took us a while to track down, because at that point, they weren't mass-marketing the stuff yet, so we didn't know it existed. We were puzzled, because Barilla had been a completely egg-free facility (and one of the few in N. American markets, btw).

Sure enough, about 9 months into this, they did their roll-out-- and about a year later, finally changed the packaging on their blue-boxed pasta to reflect the shared lines.

She's had similar experiences with any number of products that WERE "safe" from contamination caused by shared production lines... until they weren't. We've also been burned because manufacturers will LIE TO YOU on the phone!!

So you'd better believe we pay VERY close attention to who makes what and in what kind of packaging. We pay close attention to the labeling policies of various companies, (No to Kraft, yes to Keebler, Maybe to General Mills and Kellogg's-- it is VERY VERY complicated).

We buy a LOT of low-processed/unprocessed foods-- because there is no way to match them in terms of safety. BUT-- any processing step that occurs in someone else's kitchen, or around an allergen-- renders safe food unsafe.

Conveying all of that is virtually impossible. Not everyone can understand it.

Based on these two comments, I have a question:



Would having those people over to your house to prepare a dish for your DD in your kitchen, from your known-safe ingredients, and with your equipment satisfy their need to give her a food treat?

I will be honest, I don't get why people are so obsessed with having to make any child something to eat. Maybe it is just a side effect of having a sister with friends with all kinds of allergies and food fads, my mother was always glad to step back - if my sister's friend's mother said to buy this brand of XXX, or serve her only what comes with her and nothing else, my mother followed it.

Then again, I don't like to cook so I guess I am in the minority folks who does not feel a driving need to make sure that I can make something that is edible (i.e. without allergens) for whoever eats it. I am just as happy if they say don't cook, bring something else (flowers, balloons).

We love to cook and love to eat. But as I always say when DD complains that she's hungry and dinner's a half an hour away: "It's not like there's a famine on."*

DDs life is like a rolling buffet, far beyond the bounds of what's logical or reasonable. Every week is some kind of celebration and the last week of school, it seemed like every one of her classes had some kind of unhealthy treat. Sporting events always involve an after game snack (lest the little darlings perish on the 15 minute drive home -- or to the nearest drive through. And every parent she comes into contact with seems to want to feed her. Any expression of hunger is greeted with a reaction of horror by adults in the vicinity.

A busy day starts to look like a Hobbit's meal plan: Breakfast, second breakfast, brunch...

A friend of DDs is pre-diabetic and needs to avoid refined flour and sugar, yet every place he goes he's confronted with temptation. And then we hand wring about childhood obesity.

While this trend probably explains the urge adults have to press food on every child within fork range, it has to be a nightmare for parents of allergic children.

If a child has extreme allergies, I'm happy to NOT feed them. I want the child and the parent to direct that conversation and experience.

* Of course I realize that in places there IS a famine going on and that even in the US some children go to bed hungry... which makes the context even more upsetting IMHO.