Son just diagnosed PA/TNA

[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.

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?

She was in a larger city. I have to drive an hour to get to her office. There are probably not any allergist in my very small town. I can look and see if there is anyone in the other big town nearby (opposite direction of the one we went to.) How can I find out is an allergist specializes in environmental allergies or food allergies? I just went with the doctor everyone recommended to me and her website don't say anything about the kind of allergies she specialized in.

The website says "She joined xyz Allergy and Asthma in 2005, immediately following the completion of her Fellowship in Allergy and Immunology in Philadelphia.  She earned her BS in Biology from Duke University and completed her Medical Degree and Residency training at SUNY Stony Brook.  Dr. W is Board Certified in Pediatrics as well as Adult and Pediatric Allergy and Immunology."

Then on another page it says "Skin testing is usually preferable because it is simple and less expensive than serum samples performed in the laboratory.  Skin test results are available almost immediately and are more sensitive than the lab (RAST) test.  We use the Greer Pick as a testing device.  This is a 6 pronged applicator, similar to the TB tine test. These tests can be interpreted within 20 minutes.  The assistant will grade the test depending on the size of wheal and redness, in relation to both the positive and negative controls. Intradermal tests are performed if the scratch tests are negative."

[LinksEtc]

EmilyAnn,

It's totally your decision, but you might want to edit the above post for privacy.  It's easy to plug a quote like that into a search engine.

I am wondering if this might be an option for you
http://pediatrics.duke.edu/divisions/allergy-and-immunology

The fact that you weren't given an action plan is a red flag to me ... This is pretty standard these days.  Sometimes "the best" in something, is not the " best" for you and your particular needs.  Finding an allergist who you connect with, and who is knowledgeable, will make a huge difference as you start on this journey.




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I can edit my post if you want also.

[EmilyAnn]

EmilyAnn,

It's totally your decision, but you might want to edit the above post for privacy.  It's easy to plug a quote like that into a search engine.

I am wondering if this might be an option for you
http://pediatrics.duke.edu/divisions/allergy-and-immunology

The fact that you weren't given an action plan is a red flag to me ... This is pretty standard these days.  Sometimes "the best" in something, is not the " best" for you and your particular needs.  Finding an allergist who you connect with, and who is knowledgeable, will make a huge difference as you start on this journey.




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I can edit my post if you want also.

I did think about that before posting last night, but I think the only info anyone could get from that is that I live in a city an hour away from a big city in NC. Right?

[CMdeux]

For now, that probably doesn't seem like that big a deal...


but as you go along, it might be later.    Friends, neighbors, and family have a way of finding us here.... and (unfortunately) so do those who might be looking for less desirable/helpful reasons, like that nasty woman at the homeschool co-op, or the guy that told us to bug off at the HOA meeting...  school principals.... etc.

It happens.  Also, as your kids get older, they become more desirous of anonymity, which is something that most of us never stop to think about when they are preschoolers!  I first joined up with this community when my DD was just two years old.  She's almost 14 now, and she's <gulp>  a member here, herself, now. 

Most long time members handle that need for privacy in one of two ways:

a) let all of the identifying stuff hang out there, and NEVER share anything-- ever-- that you wouldn't shout out in front of your own house.  No vents, no ranting, nothing less than flattering/nice about EVERYONE in your life, and everything you encounter.

b) Keep some details very private (location, gender, names, birthdates, identifiers of your occupation/employer/faith community, etc) and then let all the stuff you CANNOT have out there in real life hang out.  Rant/vent away.  And believe me, there WILL be people who will do things that make your live much harder than it needs to be, and you WILL want to scream. 

The latter tends to be a bit more sustainable in the long haul as our kids age into adolescence, but both are viable solutions.  Also, worth noting that some communities (support) skew toward less anonymity and some toward more, and some toward VERY young cihldren, some toward young adults.  We tend to be about school-aged kids and adolescents on the parenting side, and multiple food allergies on the adult side.

[LinksEtc]

Also, it wouldn't surprise me if allergists lurk here once in a while ... it's just something to keep in mind.

Sorry, I didn't mean to take this thread off track.  It will take some time to get a handle on this allergy stuff ... take it a step at a time ... focus on the basics first like recognizing the symptoms of a reaction, knowing how to use the epi, & learning to recognize allergens on the food label.

[CMdeux]

 


Get into the habit of EVERY label-- EVERY time.

I've been doing this for well over a decade at this point, and I still make mistakes.  Usually, since there is a second pair of eyes on things (DD's) the number of reactions that result from those mistakes is low... but the very fact that I can make them and bring things that are unsafe into my home accidentally after all this time is disturbing-- I'm not that kind of person (the kind who is casual about errors and doesn't worry about making mistakes).

It's very easy to skip that step of flipping the package over before you put it into your cart-- all the more so with products that you trust, or those which look more-or-less identical to them.

[EmilyAnn]

I posted somewhere else asking if people knew where I could buy a small backpack for my son. I said needed something small enough for him to carry and it only needs to hold clean underwear and shorts, a cup of water, and his epi-pens and Benadryl. This one woman started lecturing me on how dangerous it is to let him carry around an epi-pen and Benadryl.

I have a small case (looks kind of like a make-up bag) that has 2 epi-pens, 4 children's Benadryl fast melts, and a card with info on it. I would put that case in the backpack along with the other things. This one woman kept telling me it was so dangerous for me to have any kind of medicine in a backpack for him to carry around. The plan is for ME to keep track of the backpack and hand it off straight to another adult (Sunday school teacher, grandparent, whoever he is going to be with.) Is it really that dangerous? She said other kids could get a hold of it and take the medicine or stick themselves with the epi-pen. It seems to me like it would be the easiest way for him to keep all of his stuff together. And even if I am in the same building, if he were to have a reaction every minute would count, right? So the time it would take for someone to walk to the sanctuary, find me, and us get back to his classroom would be minutes wasted.  And if the adults watching him are not responsible enough to keep other kids from messing with his bag (which would be hanging on a peg up on the wall) they are NOT someone I want to leave my child with anyway!

[Mfamom]

a lot of times too, environmental allergies like (grass, pollen etc) can produce false positive on spt for tree nuts.

[CMdeux]

My daughter has been carrying her own epipens ON her body since she was not quite three.

In all of that time, she has NEVER allowed another child to handle them, though she will 'show' them to others sometimes if they are curious. 

I find that this particular argument is usually made by people who really don't have a great understanding of what this device is, nor of why it is important to carry it on/near the allergic child.  Mostly, our kids regard those epipens as:  a) yes, a pain to carry around everywhere, but b) a revered/sacred item because they are a kind of talisman of safety-- for real.

Any child that has experienced a scary reaction and understands cause-and-effect will NEVER make the mistake of allow others to handle them casually.    JMO, but the Canadians often have kids self-carry much younger than Americans typically do-- and I think that they have the right idea here.  Just like with a medic-alert bracelet, they ought to feel vulnerable and just... wrong... without them on.

My daughter has always had input into what she wanted her "carrier" to be like.  She's worn them in a small cross-body bag most of her life.  It's hands-free and keeps her from setting them down and leaving them (which, yes-- she's done, especially when she was about 7-8yo... plan ahead and put contact info IN that bag).  Some kids like belt carriers or fanny packs which can be more or less hidden under an untucked shirt or jacket.

[Mfamom]

i missed the point about a child having the epi pen on his/her person the first time through.
first, that really isn't anyone else's business and it is very dangerous for YOUR child to be without his Life Saving Medications! 
My ds has carried his since he was in 5th at school and has had it on his person during times I wasn't with him.  He never allowed anyone access to it (mostly because he takes his allergies very seriously)
there are carriers designed for epi pens.  there is a thread here with links to different companies.

[SilverLining]

I posted somewhere else asking if people knew where I could buy a small backpack for my son. I said needed something small enough for him to carry and it only needs to hold clean underwear and shorts, a cup of water, and his epi-pens and Benadryl. This one woman started lecturing me on how dangerous it is to let him carry around an epi-pen and Benadryl.

My son has been wearing his epi-pen in a belt around his waist since he was 3 or 4. 

[EmilyAnn]

one of my other sons has a well-child visit tomorrow. I think I will ask the pediatrician then if we can get a blood test done in their office and if so I will go ahead and get one scheduled. I was going to wait until his 5 year check up, but I think I need to know now. If it is true that the skin test has a high false positive rate I want to compare the results of the skin test to a blood test. I want to protect my child as much as I can, but I don't want to restrict him more than I have to if he is only allergic to tree nuts and not peanuts (or something like that.)

[CMdeux]

Yes, with a brand new baby, you're going to have a LOT of things to manage at once.  It would be really wonderful if a peanut allergy weren't among them.  (I can hope, right??)

But if it is, it's also better to know that you're not worrying for nothing, too.  His dislike of peanut products is probably not a very good sign, unfortunately.  Many kids who become/are allergic have that same aversion to them. 

[Macabre]

Fwiw I have posted freely about the allergist we saw when it was outside of our Virginia city for instance, once we started going to Wesley Burks at Duke I had no problem sharing that. (He is a FA guru and top notch and is now at UNC Chapel Hill) and that we had been accepted into an oral immunotherapy trial with Scott Commins at UVA. I'm not going to rant about them publicly, not that I had reason to. We had to drive to see both docs.

I just make sure I always keep a few bits of info to myself, and I do fine. Besides-- I've become FB friends with a lot of folks here and have met a number in person.

With regard to self carrying, it depends on the kid. My son started totally self carrying at 9, but I wish we had started in Kindy, because as he carries the Epi pouch that kept was in his teacher's desk to music and gym, he lost it a few times. It wasn't second nature to him to have it for a long time.

He would have done fine wearing it in a belt at that age--better actually. But it depends on your child.

[lakeswimr]

The allergist should have given you a clear written plan for what to do in case of a reaction and when to use the epi pen.  About all plans would call for giving the epi pen for mouth symptoms and for lip swelling.  That can mean the person is in danger of swelling spreading to the throat that could block breathing.  I think the ana grading chart is interesting but I personally prefer a clear written plan that says if x happens do y, etc.  If you google the phrase, 'faan emergency action plan' you will find a pretty standard plan.  I understand your allergist is the best in your area.  It might be worth driving, even a few hours, to a better allergist.