Son just diagnosed PA/TNA

[EmilyAnn]

My son David will be 5 in June. When he was about 6 months old he started having issues with eczema. When he was 11 months old his pediatrician referred us to an allergy specialist. She did a skin test and he tested positive for dust, mold, cats, dogs, and every pollen they tested for. He did not test positive for any foods. When he was 2 1/2 we went back for another skin test. The results were all the same. He has dealt with severe eczema and environmental allergies his whole life, but never had a reaction to any foods.

Then on December 23, 2012 we were at my grandmother's house having Christmas dinner. David was 4 1/2 at the time. He was eating and told me his mouth hurt. I looked in his mouth and everything looked fine. A few minutes later I looked up and his lips were very swollen! I told him to take a deep breath, looked at his tongue to make sure it wasn't swelling, and had him drink some water to make sure he could swallow. He seemed to be breathing ok so I gave him some children's Benadryl chewables and took him into the living room to watch him closely while the rest of the family finished dinner. After a little over an hour the swelling had gone down and he looked and acted normal. Everything he ate that night were things he had eaten before, the exact same meal he had a month earlier at Thanksgiving and every Easter, Thanksgiving, and Christmas since he started eating solids.

So I kept giving him Benadryl every 4 hours through the night and stayed up all night watching him breathe. The next day (Christmas Eve) I called his pediatrician and she called the local Walgreens and called in a prescription for him to get a 2 pack of epi-pen jrs. We were not sure what food caused the reaction, but it seemed like the pecans on the sweet potato casserole were the most likely culprit. A couple of days after Christmas I called the allergist to make an appointment and was told they couldn't see him until March 4th.

So, this past Monday I took him to the allergy specialist and she did a skin test. This time she only checked for foods and not all of the things he had tested positive for in the past. he tested him for cashew, almond, English walnut, peanut, pecan, Brazil nut, hazel nut, cow's milk, egg white, and soybean. He tested positive for cashew, English walnut, peanut, pecan, and hazel nut.

I feel like she didn't give me much information. She told me what he was allergic to and asked if I had any questions. Of course I couldn't think of any at the time, but now I feel like I have a million questions!

[Jessica]

I'm sorry but I'm glad you've found us. Keep in mind that sometimes, too much knowledge can be very scary. It will get easier. Ask away.

[CMdeux]

Hmm-- yes, I remember that feeling of "What?  That's it??  Why aren't you telling me what I need to know??"  and wondering (feeling overwhelmed, truth be told) what I didn't know, and how my kid was going to be paying the price for me learning things the hard way. 

It's a terrible feeling.


Some suggestions from my memories of that first adjustment period:

a) review the anaphylaxis grading chart so that you know WHAT kinds of symptoms need to be raising "is this an allergic reaction?" red flags in your head.  It's inevitable, but you'll be spending a lot of time in the next few months/years trying to figure out when something is illness and when it's allergy.

b) Know when to use those Epipens.  Ask your doc for guidelines there-- and look up best practices from FAAN, etc. so that you know that your allergist's advice seems solid and current.  Knowing the difference between local reactions, local reactions which are impacting essential parts of the body, and systemic reactions is key here.    The reaction that you describe is in that middle zone-- it's possible that it was elicited by contact, but because it was in an area which can cause airway impairment, it still needs to be watched/treated aggressively (which you did!  YAY, you!!!).

c) Medic-Alert bracelet for your child.  This is so that he doesn't always have to speak for himself if, heaven forbid, you can't do it for him. 

d) begin learning about what this will mean for school and other activities where he isn't in your care-- and begin planning for those things.  He should NEVER be without an adult that knows how to treat a reaction with epinephrine. 

I'll answer your other specific questions in the other thread.

A very warm welcome, by the way.  I'm sorry that you needed to find us, but I'm glad that you have.   

[EmilyAnn]

What is the anaphylaxis grading chart? can you post a link?

[rebekahc]

Hi and welcome!  Here's a link to a page that includes a link to the Anaphylaxis Grading Chart.  http://foodallergysupport.olicentral.com/index.php?action=page;sa=Welcome

[EmilyAnn]

thank you!

so was his reaction in December only a grade 1?

[PurpleCat]

Hi!  and Welcome!  Stinks to be here, but it's a good place to be!

I did not bother looking at the grading chart to answer your question.  I just want to put this out to you.  If he's allergic, he's allergic. 

I had a waitress last week say to DD, "well if you are only a little allergic to sesame you can try this" - I looked her square in the face and said "There is no such thing as a little allergic!  You either are allergic or are not allergic!"  Next thing I knew the restaurant manager was at the table apologizing and assuring me that the kitchen understood and the food would be safe.

Reactions are not predictable.  How your child reacted in December may not be how he reacts if there is a next time.


It surprised me that even today, allergist still don't arm their patients and families with information.  You are just left trying to figure it out as you go along.   That is a very uncomfortable place to be and I was in your shoes about 10 years ago.  Some of the same people who are here helped me navigate our journey and still do!

I don't know how that can change, but have often thought allergists should be required to have nutritionists who specialize in food allergies on their staff.  But off my soap box now.

No question is too small, no question is dumb....just ask.  One day at a time.

[LinksEtc]

Welcome EmilyAnn 

I just wanted to make sure that your allergist gave you a "Food Allergy Action Plan".
This is an example from FAAN/FARE (some allergists have plans that may be somewhat different):
http://www.foodallergy.org/files/FAAP.pdf

I've really learned a lot from this group ... it's a good place to find help and support.

[EmilyAnn]

Welcome EmilyAnn 

I just wanted to make sure that your allergist gave you a "Food Allergy Action Plan".
This is an example from FAAN/FARE (some allergists have plans that may be somewhat different):
http://www.foodallergy.org/files/FAAP.pdf

I've really learned a lot from this group ... it's a good place to find help and support.

Nope, she did not give me an action plan at all. She gave me a paper with the test results and told me to look up foodallergy.org. That's all. I really left the appointment feeling scared and overwhelmed.

[Macabre]

Okay--something else to consider:  your child may not be allergic to all those foods if your doctor only used a skin prick test.  SPTs have a high false positive.

A blood test (ImmunoCAP) is a more reliable test--and used in conjunction with an SPT is more helpful. Of course, the only thing that can truly diagnose a food allergy is reaction history.

Still, it could be that your son is only allergic to peanut but the pecan he ate was cross-contaminated (you'll see that as XC here) with peanut. There are very few peanut free pecan companies.  Or he could really be allergic to all those things.  And at this point, that's the assumption you should make.

However, I would ask for a blood test when you next visit your allergist.

Is this a board certified allergist? Of course, even they can give little info or not operate according to best practices. It's awful, but we see/experience it too often.

Some things you should know about labeling: it's not as helpful as it needs to be.  Companies only have to label for the top 8 allergens if they are actual ingredients. However, some children have reactions to trace amounts that can remain on equipment--even if the manufacturer says they clean well.  Manufacturers are not required by law to label for shared lines--just actual ingredients.  Some companies label "may contain."  Just believe them. Some of that labeling is CYA, but at this point, just believe them if it says may contain.

However, know that just because a label doesn't say it contains the allergen doesn't necessarily mean that it 100% doesn't. 

Some companies are known for labeling for shared lines:  General Mills, Keebler (Keebler may be a GM brand), Pillsbury, Hershey.

What our allergist told us:
No Asian food unless you make it yourself (most all restaurants don't fully clean the woks, and the cashew or peanut or sesame or shellfish protein remainPF Chang, and they are good abotu serving folks with food allergies--but at this point, I'd just stay away from all Asian restauratns)

No ice cream parlors

No chocolate unless you know it's safe

No bakery items

Carry the epi everywhere (at least two). Make sure you don't let it be exposed to extreme cold or heat. 

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I am glad you found us.  I hope this resolves some of your kiddo's eczema issues. 

[Jessica]

For peanut, there's component testing (the Uknow Peanut test) that is supposed to be more accurate even than immunocap. Not as many doctors do it yet though.

[Jessica]

btw my dd's allergist believes that skin testing is the gold standard and he would not do a blood test. He said the skin test is more accurate. Not saying one way or the other, but that is what we're dealing with (him not even considering that it may not be). She has had positive skin tests 3 times and there are some that tested positive, then negative, then positive (almonds and brazil nuts).

[EmilyAnn]

The allergist we saw is supposed to be the "best" in our area. She has a REALLY long wait just to get an appointment. I think it is something like 4 months or more for established patients and even longer for new patients. Could his pediatrician do the blood test?

The allergist did say tests my not be very accurate because he is still young, but she said a blood test would not give us any more info than what we have now. She also said it is a very expensive test. Would the blood test combined with the results of the skin test be the most accurate?

[CMdeux]

Maybe not, maybe so.

Our rule of thumb is to ask "if the results said _____, what would it mean to us?  What would it change?"

If the answer is "nothing" or even worse-- "it would make things worse, because then we'd wonder if we shouldn't do _____, but we wouldn't KNOW what the right thing is..."

well, in those cases, we've found over time and with bitter experience, it's PROBABLY better to leave those things alone, by and large.

I guess what I'm saying is-- consider what you'd do if that blood test showed VERY HIGH IgE levels.  Would it change things in your mind?

Maybe. Would that be the rational and right response? Maybe, again.  That's one to discuss with the allergist.

If they were zero, though... <thoughtful>

would you be willing to try challenges?  Would your allergist?  Would your son?  I'm guessing that at this point in time, you probably are thinking not.  So in that case, the information wouldn't change a thing, right?


I'll add that while a RAST is certainly not free, and clearly your son is going to need to have epinephrine around either way... avoiding peanut can be fairly expensive all by itself, when you amortize not being able to buy contaminated (less expensive) products over several years.  It gets even MORE expensive if you get stuck "providing treats" for playgroups and the like in order to reduce risk for your child.

[hezzier]

The allergist we saw is supposed to be the "best" in our area. She has a REALLY long wait just to get an appointment. I think it is something like 4 months or more for established patients and even longer for new patients.

And she may be  the "best" for environmental allergies, but not have a lot of experience with food allergies.  Not all allergists are created equal!!  Do you have a larger city near by that might have more options?