New to this, lots of questions

[EmilyAnn]

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.

Should I be concerned about coconut? Sesame? Legumes? Anything else I should watch out for or try to avoid? 

Is he more likely to develop allergies to other foods now?

Are his brothers likely to develop food allergies? Neither of them have showed any signs of environmental allergies or eczema.

Is the allergy likely to get more or less severe over time?

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.

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?

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?

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!

[CMdeux]

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.

[EmilyAnn]

Thank you so much for all of your help. I am honestly crying right now. Being hit with this news at 17 weeks pregnant (and highly emotional LOL) is very overwhelming and I found quickly that Google is NOT my friend!

He has had regular M&Ms in the past, but none since his reaction in December. I went ahead and ordered some Skippers from Vermont Nut Free Chocolate Company. When I was trying to explain to him about his allergy he started crying and said "So I can never ever have M&Ms again?" So I hope the Skippers come quickly!

When he had the skin test done the peanut spot made the biggest welt (even bigger than pecan) so does that mean he is most allergic to those?

One time, in January, so not long after his initial reaction, he was eating some canned Van Camps Pork N Beans and he told me they were making his mouth hurt. I wasn't sure if this was a reaction or a 4 year old trying to get out of eating something he didn't want to eat. He has had those beans and pinto beans in the past with no problem, but for now I think we will avoid beans.

The good thing is he has never LIKED nuts of any kind, so it isn't like we are having to cut out something he eats often, but it is all of the "may contain traces of" stuff that is going to be difficult.

My 18 month old has never had any kind of nut directly, just maybe traces in stuff, so I am worried about him possibly having an allergy too.

My 3 year old LOVES peanut butter. Since December we have only been letting him eat it when he goes to my mom's house. She is AWESOME and lets him have his PB&J, then brushes his teeth and gives him a bath and sends him home clean and happy Is this overkill or a reasonable precaution? He is 3 years old, so not the cleanest eater LOL

[CMdeux]

I probably would NOT advocate avoidance for your other kids...

nor would I recommend avoidance of other legumes.  They are really good sources of protein, for one thing.

Hard to know with kids whether or not they are yanking our chains when they complain about food.  If it's something that a child complains about/refuses/avoids in any form, seasoned in multiple ways, etc...


then that becomes something to ponder on.  A single particular food like that?  Meh.  Probably just kids being kids.  Ignore and move on (after you've made the mental note about it). 

Skin testing is notoriously inaccurate, actually-- produces false positives at about a 50% rate, if that says anything.

Wheal sizes are also not that significant.  Well, they are and they aren't.  Beyond a certain size (like a quarter or larger) they seem to indicate "Yeah, almost certainly actual allergy." But not "this allergy is anaphylactic" or anything like that.  Unfortunately, you only know if you're in that 50-70% of nut allergic people by finding out the hard way.

A large wheal coupled with a VERY high IgE level (on a blood test of antibodies circulating toward particular allergens) probably means more than either one alone.... but neither one of them means a hill of beans when compared with actual history-- either of consumption or of reactions to consumption.  So no, the fact that PN>pecan on a skin test means absolutely nothing.

Yes, for now I'd think that keeping a PB-loving toddler/preschooler out of range of a possibly-allergic older sibling is wise.  If for no other reason than that you have plenty of other worries!  Time enough to bring it back into your house later on if it seems safe to do so, you know?

Realize that the odds are VERY good that your child is only allergic to a single treenut or maybe to a couple of them.  It's possible that the peanut allergy is also a clinical allergy-- but the skin test says nothing about threshold.  My caution above was about NOT starting avoidance that you don't have evidence to support, because that really can impact your life (and frankly-- his safety) if you've started out with a fairly generous reaction threshold and systematically avoid in a way that reduces that threshold over time.  This stuff really matters, unfortunately, because you can go from "fine eating M&M's" and a dose that will allow him to safely eat a school cafeteria lunch.... to... well, like my DD, who can't be in a smallish room with peanut butter cookies without her nose running, her eyes puffing up, and wheezing. 

Avoid what causes reactions-- and be alert to those things like hives, food aversions, etc.  Teach your son to trust what his body tells him about food.  So what if that means that you wind up doing a bit of catering to food dislikes rather than real inability to tolerate the food?  It's a healthier relationship with food, anyway, to eat what you want to eat and stop when your body says to, right?  Just differentiate (for yourself and for other caregivers) between his ALLERGIES (which are serious 'do not cross this line' things) and preferences... which often just fall under the heading of "please don't ever force/coerce this child to eat any food."  My DD13 loathes mushrooms.  But she's definitely NOT allergic to them.  How do I know?


<furtively looks around>

Because when she was 5-7 yo, I would occasionally sneak TINY amounts of them into things she loves, like meatloaf and spaghetti, and I would grind them so that they were invisible.  She ate them up, just as though they weren't there, and NEVER suffered a moment's hesitation.

I don't recommend that approach if you suspect for any reason that your child might be allergic to a food, by the way.  Just that it's a way of separating sheep and goats when you are at least 90% sure that it's NOT the case.

[EmilyAnn]

so should I ask for the blood test for him? to compare the results to the skin test? The allergist said it was an expensive test and she doesn't see the point in doing it. Would it give us more information? Of course I don't want my little one to go through a blood draw if he doesn't need to.

[hezzier]

Yes, for now I'd think that keeping a PB-loving toddler/preschooler out of range of a possibly-allergic older sibling is wise.  If for no other reason than that you have plenty of other worries!  Time enough to bring it back into your house later on if it seems safe to do so, you know?

See if you toddler will go with sunbutter or a soybutter and jelly sandwich when at your house. 


Also, it took me a while, but I learned to trust my son's instincts when food causes a reaction even if mild.  He whole heartedly claimed he didn't like nuts (diagnosed at 4 with TNA), but I had never given them to him because they were a choking hazard.  A couple years after his diagnosis, I made meringue cookies.  After he said his throat was scratchy and sure enough on his next skin test, egg was positive...he had never been tested for egg, because again, he didn't like them so didn't eat them as plain egg.

Keep asking questions, this community is a wealth of information and support.

[twinturbo]

Sorry if I missed it and it was right in front of me but has your son been esting peanut or peanut butter without reaction thus far? I saw the part where you suspect a pecan pie but I only saw peanut confirmed by a skin test.

As for the other kids, although my second child has ended up with reactivity to a host of common and not so common allergens than my first I went into it as a blank slate. They're for the most part allergic to different things anyhow.

[CMdeux]

so should I ask for the blood test for him? to compare the results to the skin test? The allergist said it was an expensive test and she doesn't see the point in doing it. Would it give us more information? Of course I don't want my little one to go through a blood draw if he doesn't need to.

There probably isn't a reason to do it NOW....


but...

yes, at some point down the road, it would be really nice to know whether or not your son has elevated IgE to just one, most, some, or all tree nuts... and, probably most importantly, to peanuts.

Peanuts are a lot harder for kids to avoid than treenuts tend to be.  They are just present in a lot more "kid-friendly" foodstuffs, and they also tend to be present as cross-contamination in many, MANY more things.  So the bottom line is that not being PEANUT-allergic means less restrictive lifestyle modifications for him-- and, potentially, for his classmates.  It's a lot easier to advocate when you KNOW that you're doing it because you truly must do it, and not just because "probably" you should?  I mean, one thing to ask it of family-- quite another to ask 25 or 30 other families not to send PB+J in lunchboxes. 

Besides, I'm sure your DS would be happy to undergo a challenge in order to get M&M's back!!  (I feel for the guy-- my favorite foods are all off limits now, too, because of my shellfish allergy.  It really sucks.)  The VNF skippers aren't really the same candy, though they are reportedly similar.

[EmilyAnn]

I think he only tried peanut butter once. He told me he wanted a peanut butter and jelly sandwich, so I made him one. He took one bite and said "Yuck! This has peanut butter on it!" I hate peanut butter so at the time I just assumed he did too. He has had a few peanut M&Ms (he spit them out) Reese's Pieces (he thought they were M&Ms, he gagged and spit them out) a few bites of Nutella (hazelnut I think) carrot cake with walnuts, and pecans on sweet potatoes and pecan pie a few times. Other than that I cannot think of any time he has had nuts. He has never liked nuts, so he hasn't had them often. He never had a reaction to any of them until this past December.

My husband and I had already decided before we ever had kids that we would be homeschooling our children, so we do not have to worry about sending him off to school in August. The only time he is ever away from me is at church (I am in the same building) and when he is with my parents or my husbands parents.

We had considered sending him to a week long half day camp this summer. I emailed them about his allergy and this is the response I got "We have a few children extremely allergic to peanuts. We only provide peanut free snacks/meals. Some of the kids bring things from home and we strongly encourage them to be peanut free but there is no guarantee. As a precaution, we keep our allergic children away from food brought from home. (Similar to a peanut free zone). Of course, they are not isolated as we allow children with peanut free snacks to join them. I hope this helps!" (they also run a preschool, after school programs, and parent's night out.) I asked if their staff was trained in how to use an epi-pen and she said they were and that they had multiple children who brought epi-pens just in case.

[twinturbo]

You may want to consider clearing up peanut for more than just mass education. Homeschooling entails more than going solo I know I've done it for a bit. There's playdates, playgrounds, birthday parties, community events, the list never ends.

However, it might be prudent to keep peanut on maintenance in the diet for a child that has true tolerance. While studies on other allergens such as milk, egg and apple (yeah, apple's a weird one but I have it) show that tolerance declines without maintenance I think the most evidence exists for peanut maintenance. So for that reason alone it could be worth determining.

Someone more awake than me may want to massage my words there and correct my inaccuracies.

[EmilyAnn]

You may want to consider clearing up peanut for more than just mass education. Homeschooling entails more than going solo I know I've done it for a bit. There's playdates, playgrounds, birthday parties, community events, the list never ends.

However, it might be prudent to keep peanut on maintenance in the diet for a child that has true tolerance. While studies on other allergens such as milk, egg and apple (yeah, apple's a weird one but I have it) show that tolerance declines without maintenance I think the most evidence exists for peanut maintenance. So for that reason alone it could be worth determining.

Someone more awake than me may want to massage my words there and correct my inaccuracies.

yes, I know But i still think it is nice that I can be with him all day (at least now while he is very young) instead of trusting someone else to watch out for him 7 hours a day 5 days a week. While I definitely appreciate all teachers do,  I prefer to keep my kids with me. At least I will only be responsible for my 4 kids and not a class of 20+ 

As for your 2nd paragraph, I am really sorry, but I have no idea what you are talking about! What do you mean by "keep peanut on maintenance"? 

[twinturbo]

Actually, I am working within that exact framework, and yes I fully agree it is wonderful to have those years together. I attended preschool with my child through a co-op where I was a parent volunteer and later at a facility with an observation room attached directly to the room. Same for playgrounds, I run around with the kids trying to avoid the smartphone zombie MIA parents twiddling with their Facebook apps who treat other parents as impromptu babysitters.

Hopefully repositioning against previous assumption can alert you to the importance of discerning peanut as a life threatening allergen or not, even if you plan to homeschool. Eventually you have a high likelihood of wanting to use a public playground even if it's just your kids everyone else is unknown to you. Same for open time at gyms for homeschooled kids. Parents will be there jamming PB&Js down the kids or serving it right on the gym equipment. No, I have no idea why people have their kids picnic on equipment. Yes, it is gross.

Here's what I'm not saying. I'm not saying drop your kids off with strangers. I'm not saying run out and get a blood draw to test tomorrow. I'm not saying challenge peanut immediately. I'm not saying you can't or won't homeschool. (Although it may surprise you how many of us here homeschool or cyberschool with 504 plans in place.)

What I am saying is at this age peanut is a tremendous allergen in terms of potency, ubiquitousness, omnipresence and political matchpoint for the nostalgic. Crossing off that allergen would be life altering for the positive in terms of choices.

Please take it under consideration as you chart a course for management in the future. There's no need to take my word for it now but the difference lies not in whether or not you are close at hand. You aren't going to have the peanut--but others will and it will surprise you where and how often it crops up if you must avoid it. If you don't have to avoid it you will be blissfully unaware.

It's a formidable allergen for many reasons. I would never advise anyone to take it on under any circumstances unless it were truly necessary.

As for the reasons that contradict taking peanut out of the diet of a tree nut allergic child who is tolerating it I'm going to let someone else field it if they want to because I truly feel I won't do you justice on it in my current sleep deprived state.

It's perfectly normal for a lot of this to not make sense yet.

[CMdeux]

Yes...  peanut is, next to milk, THE MOTHER OF ALL ALLERGENS in the preschool-through-elementary age group.  It's positively surreal.

If you have to avoid it, you'll find yourself sitting WITH your child in art classes, kindermusic, tot gym, etc. etc. etc.  Now, your child will be used to this after a time, and it won't bother the two of you so much, but it WILL label you "that helicopter mom" and "that freakish bubble boy with the wacko parents," and it will mean abruptly LEAVING playgrounds, parks, parties, bouncy places, etc. etc. etc.

You can definitely take my word for this one.  I've lived through these years with a peanut allergy. 

I can't imagine how torn I would have felt telling the kid-gymnastics instructor "yes, you really do need to go over the equipment with clorox wipes or soap and water" after she discovered that a child in another class had dropped a handful of peanuts inside a crawl-through tunnel if I hadn't known that my daughter's safety was truly on the line if she didn't.  I mean, I was apologetic, but I knew that the two or three hours' worth of work would matter the next time my DD was in that class the following week.

  KWIM? 


Even your church nursery is not necessarily a safe zone.  They MUST know how to use those autoinjectors, and they probably need to commit to keeping food OUT if your child is peanut allergic (far too many packaged snacks are going to contain peanuts and it'll be a nightmare for them to track it all).

The two nuts which have proven to be most problematic for my DD in terms of the need to control other people's behavior?  Peanuts and almonds.  They're in EVERYTHING.

Now that she's older, pistachios and cashews are a larger problem than they were when she was little, but peanut is still THE big problem.  We run into it everywhere.

People feed their DOGS peanut butter.  Seriously-- if your child is peanut-allergic, you have to worry about strangers' dogs.  Not kidding.  What if one licks his face?
(We've completely had this happen.  More than once.)

[PurpleCat]

Do you live near an AC Moore?  They now carry bags of Sixlets in their cake decorating area.  They do not look like M&M's.  They are round, candy coated chocolate in lots of really cool colors.  They are made in Canada and are Peanut Free - it's on the package.

I also found them this weekend at Rite Aid in a bag....cellophane tubes of about 10 pieces in different colors for Easter.  (grabbed those for our egg hunt eggs) - the kids are home (snow day) or I'd grab the bag and give more info.

There is a candy store near me that sells them but by the scoop and therefore I would not buy them due to cross contamination.

My kids love them. 

Perhaps an alternate treat for your little one that won't be confused with M&M's.  My DD loved getting Skippers but I will say when she was 5/6 her friends were confused and wanted her to eat M&M's they brought.

[rebekahc]

Yes, Sixlets are a great M&M alternative.  My DD who can have both prefers Sixlets.  I've also seen them sold at Party City and Hobby Lobby.  They have large-ish single color bags and mixed color bags there.  Hobby Lobby has them in both the party section and the wedding section.