Hi EA!
I'm going to answer your questions as well as I can-- hopefully my answers can reassure you some. My DH and I both have food allergies that have persisted into adulthood. I also developed a shellfish allergy as an adult. I have a DD13 who has been allergic to peanuts since she anaphylaxed with all the bells and whistles at 11months old, and has also got other anaphylactic food allergies. She is one of the kinds of kids that you read about, unfortunately. Fortunately, her reality of life with FA isn't
average life with food allergy in some ways.
I've also been learning from other parents here (and IRL) for over a decade, so I can tell you what I think is pretty 'typical' for this community, for members of support groups, and for the general population of food allergic people.
instead of copying and pasting my whole story here, I think it would be better to just post a link to my intro post Son just diagnosed PA/TNA
So, here are some of my questions.
Is there a way to determine how severe the allergy is? I know some kids can't even touch or smell a nut without a reaction.
Er-- well, "the hard way" is the real answer here, unfortunately. If you have a kid with this kind of sensitivity.... not to worry, you'll know. Avoidance is so challenging at this level that you won't be wondering for long if you're in this minority. It seems to be only about 1% of people with nut allergies who are anaphylactic to very tiny casual/environmental exposures, though. Obviously you'll notice that more of that population hangs out here at FAS-- but it's because we have some pretty significant challenges to overcome in everyday life, not because we're "typical" of what food allergy looks like. Does that help?
Should I be concerned about coconut? Sesame? Legumes? Anything else I should watch out for or try to avoid?
Probably not. There isn't any way to really predict WHICH other food allergies (if any) your child will develop. Treenuts are correlated with some other allergies-- especially pistachio and cashew with allergy to mango, and peanuts tend to be cross-reactive with some legumes far more than others (lupine tops that list, but it's only common in European cultures)... but it's still only a minority of people. Again, you'll know if it becomes a problem, and as one of our allergists pointed out with a chuckle...
you're now far better prepared than most people for an initial anaphylactic reaction to... well, anything.
Is he more likely to develop allergies to other foods now?
Yes, but in any case he already possessed the predisposition given the clearly highly atopic person he has always been.
Are his brothers likely to develop food allergies? Neither of them have showed any signs of environmental allergies or eczema.
As you've correctly assumed, the things DO tend to come as a package deal. Many members here have only one child with food allergies, and other children who have NO food allergies. Now, their risk is slightly higher because of genetics, but it still is "unlikely." Just not as unlikely as your neighbor's kids.
Is the allergy likely to get more or less severe over time?
That's a VERY complicated question. Maybe. There
are apparently some things that we can do to make the allergy MORE severe, believe it or not, but very little that is practically applicable as a DIY project to reduce severity... and I'm pretty sure that nobody wants a "more severe" allergy... so... recent research is suggesting EVER MORE STRONGLY that avoidance
beyond what is necessary to avoid major reactions is probably the best route to an
ultra-low reaction threshold dose. SO if you
want to be among those families (like mine) that has to restrict air travel, wipe down movie-theater seats, wipe down anything that comes into your house, etc. etc. then here is how you do that: call every manufacturer, even the ones that seem to label well, and insist that everything that your child eats, touches, or plays with NEVER have EVER, EVER come into contact with something that MIGHT have been in contact with one of his/her allergens. Ever. Only expose your child to things that you can verify have NO chance of ever even being produced while someone is THINKING about nuts... Don't worry about whether things have caused a problem in the past. Check
everything. (Yes, I'm being tongue-in-cheek here. Basically, common sense suggests that you check on some things more than others-- learn which kinds of foods HAVE peanuts/tree nuts in them, and be wary about those things. But you probably don't need to call every time you buy milk.)
Is food cooked in peanut oil, like Chick-fil-a safe? The allergy doctor said it was totally fine/safe, but from what I have read online most people with PA avoid it. He has been eating it for years and I have never noticed any kind of reaction.
SEE ABOVE. In your shoes, I would
absolutely not avoid peanut oil unless/until you see evidence that it is a problem.
How worried should I be about cross contamination? I am still new to reading food labels. Do I just avoid anything that says "May contain traces of" or should I avoid anything that says "manufactured in a facility that also processes" too?
This is a personal decision. Honestly, I'd probably be more careful about things that you have reason to think are contaminated with a nut that has CAUSED a serious reaction. So-- pecans, yes? I probably would start out not worrying about "in a facility" warnings re: peanuts. The advisory labels right now in the USA are completely voluntary anyway, and may not reflect the same things when coming from different manufacturers anyway.
Is there a good list somewhere of snacks that are readily available in stores that are safe for him to eat? If he has been eating things like Goldfish and animal crackers for years now can I assume they are still safe? What about M&Ms?
Most members with PA kids here trust Pepperidge Farms, General Mills, and Keebler to label very well. Some trust Kraft/Nabisco to do so.
Mars and Hershey both label well. HOWEVER...
if you have reason to think that your child is truly peanut-allergic, M&M's are probably out. They are
very heavily contaminated because of re-work used in the coating lines of both regular and peanut products. On the other hand, if he's still been tolerating them find SINCE his reaction to pecans, that might be evidence that a peanut challenge could be in your future. So there is a silver lining of sorts. If he's been eating them since that reaction, well... I probably wouldn't let him have them when he wasn't with you... but I might still allow it if he's at home and where you're going to be supervising him for 2-6 hours after consumption.
Sorry for all of the questions, but I have been kind of freaking out for the past few days trying to figure all of this out!
NO worries about that. We were ALL once in your shoes. Just pay it forward.
Freaking out is normal for the first few weeks, certainly...
and it may recur periodically over the next few months with gradually decreasing frequency... only to recur more strongly after a close call or reaction. That's normal. If it goes beyond that, you need to keep an open mind about counseling support. This is a HUGE amount of stress to get a handle on and tote around with you all the time. It can get to anyone.