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Posted on: Wed, 04/23/2003 - 1:51am
LisaMcDowell's picture
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Joined: 12/06/2002 - 09:00

This is very curious & at the same time very interesting since I've never had my dd retested for PA. The advice given by both her Pediatrician & Allergist was & always has been "strict avoidance" of peanuts & tree nuts, that certainly was enough for us. Anyway, "strict avoidance" has kept our dd reaction free for 7 years; my dd is now 9.
Our Allergist informed us (in 1995) that he would never test her again for PA since it is a confirmed diagnosis, & that it is far too dangerous to expose her to peanut even for an allergy test because the allergy is very unpredictable, & that also a blood test is far too painful to put her through again which I absolutely agree with.
Our Allergist also went on to say that a doctor's office regardless of specialty such as an Allergist's is not equipped to handle any type of emergency; not anaphylactic reactions or asthma attacks, nada; a parent would still have to provide their own child's Epi-pen during testing, & that if an emergency were to occur the patient would still have to be transported to a hospital.
I'm just sorry that your Pediatrician & Allergist did not provide you with appropriate advice & services. A..h.l.s!..sorry, I mean those at the top of the "firing list"...oops, I mean those "clueless...well, you know what I mean. They both need to attend more in depth food allergy seminars.
Anyway, when my dd becomes an adult she can drive us crazy (if we're not already after experiencing the teen years!) by having herself retested.
Stay safe!
PS - An Epi is good for up to 1 year. When I take dd's prescription in, I ask the pharmacist to order Epi's that last for one full year because I will not purchase one that has been sitting on a shelf aging.
Also, she saw her Allergist 4Xs in 1995 & once in 1999 for an environmental allergy test. Her Pediatrician prescribes her Epi's & Albuterol. I guess we're just lucky we haven't required her Allergist's services in years...besides we're always happier to see him at Target shopping!
[This message has been edited by LisaMcDowell (edited April 23, 2003).]

Posted on: Wed, 04/23/2003 - 3:51am
KarenD's picture
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Joined: 01/11/2003 - 09:00

I am so glad you got that all figured out. Some doctors should not be practicing. I do have to say though, our allergist is equipped to handle reactions after an oral challenge. We had a long discussion about it with our allergist and their response was there or at the hospital, you couldn't be in a better place.

Posted on: Wed, 04/23/2003 - 4:57am
LisaMcDowell's picture
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Joined: 12/06/2002 - 09:00

Hi Karen,
I'm not certain whether to take that as an insult or that you are happy that my dd has been reaction free for 7 years?
Anyway, now I'm totally confused because everything I've been advised of & read is that when a reaction occurs inject the Epi & immediately transport to a hospital. So then, your Allergist is basically saying that he has all the necessary equipment & an RN to assist for a reaction from just an oral challenge. What about a skin test? Wouldn't he also be equipped to deal w/a reaction caused by it? Is he also saying that you could take your child to him for treatment during a reaction? Truly, I'm confused!
For anyone:
Seriously, is there something that I have missed that my dd would need to be retested?
[This message has been edited by LisaMcDowell (edited April 23, 2003).]

Posted on: Wed, 04/23/2003 - 5:32am
KarenD's picture
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Joined: 01/11/2003 - 09:00

I certainly didn't intend to insult anyone. I was telling Vegn67 that I am thrilled she got her doctor situation figured out. This is just what my allergist told us. All doctors are different and practice in different ways. They have epi-pens there and are ready to treat if a reaction occurs to either a skin test or to an oral challenge. If a reaction occured at home we would head straight to the hospital not to him. When we went in for ds's skin test I had concerns about a reaction to the skin test and their response to me was it couldn't happen in a better place that they had all the necessary equipment to handle one. I was also told when we do our egg challenge we were welcome to go there if we prefered over the hospital Sorry for the confussion.

Posted on: Wed, 04/23/2003 - 5:33am
becca's picture
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Joined: 05/22/2001 - 09:00

Lisa, I do not follow your post, actually. You asked "anyone" so I will answer. It sounds like Nancy's allergist(the new one) is giving her advice mostly consistent with the advice you have been given, if you read back over it. Strict avoidance of nuts and no testing, since there is a clear reaction history. Or am I reading it wrong?
Also, there is value, according to current studies that indicate a remote chance of outgrowing, and the numbers may at some date prove to provide some more useful information. The CAP RAST numbers already show some trends that indicate the likelihood to react(how often one might react), though not the intensity of the reaction or any other variables that can trigger reactions. Marginally useful, IMO. However, worth compiling stats.
I agree oral challenges should be done in a hospital, and if done on a small child, one equipped with medical equipment sized appropriately for rescue of a small child.
Also,but just anecdotal, my dd did not shed *one tear* at her last blood draw for allergies. Five vials(tiny one, though) and 2 years old! We cover her eyes, hug her, and they use an infant IV butterfly needle. I have had these used on me at my old OB office and they are amazing. I felt nothing. We needed to test for eggs, which she could likely outgrow, so they drew all her allergies to check the numbers and have a baseline, as all the tree nuts and her peanut were done at another office and/ on skin only, (peanut never on her skin).
Blood draws are frequently barely noticeable, and, unfortunately, in my extensive experience of being drawn, often depend on the skill of the tech! I do realize tiny veins and otherwise unhealthy veins pose problems as well. But it is not always a tortuous experience for everyone. becca
[This message has been edited by becca (edited April 23, 2003).]

Posted on: Wed, 04/23/2003 - 6:49am
LisaMcDowell's picture
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Joined: 12/06/2002 - 09:00

Hi Becca,
I understood what Nancy's Allergist advised, however I do not understand why anyone else would want to have their child retested or allow a doctor to do so.(By the way, is she okay w/having her name disclosed on the board?)
Even a new Allergist provided w/confirmed PA results, I would think should not be retesting...what would be his/her purpose?
FAAN states that there is a 20% change of outgrowing it, however I have also read that it could come back. What would be the most dangerous way a PA person would learn that their PA has returned? My dd can do all the PA testing she wants when she's an adult: her body, her decision.
As for gathering evidence to support a #'s
theory, it can be gathered from other children whose parent's choose to have their child retested. I'm all for contributing to humanity, but I don't have that right w/someone else's life like my dd.
Regardless of whether or not it is painful to have blood drawn, her test results confirmed PA...that is sufficient for us.
Hi Karen,
Even though your Allergist has a supply of Epi-pens, does that mean that he wouldn't send your child to the hospital after he administered one?
I'm not trying to challenge you, I'm just trying to figure this all out since I can be a such hardass when it comes to practicing avoidance. And also, by the fact that your Allergist has this supply tells me that he knows that testing can cause reactions.
Please bear w/me all.
[This message has been edited by LisaMcDowell (edited April 23, 2003).]

Posted on: Wed, 04/23/2003 - 6:59am
KarenD's picture
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Joined: 01/11/2003 - 09:00

If my memory serves me correctly he has only had one case where someone had a reaction from a skin test. He told us it is very rare, but it can happen. This was all discussed when Branson was ten months old, before we knew about any of his allergies. It was a that time that we were told not to worry that had all the equipment needed to handle a reaction. As far as what that equipment actually is I don't know, except for the fact that they mentioned epi-pens. I was very naive to all of this allergy stuff. This is the best allergist in town, so at the time all I could do was take his word that he knew what he was doing. I don't know if he would send us to the hospital; although, it is only five minutes from him.

Posted on: Wed, 04/23/2003 - 7:22am
LisaMcDowell's picture
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Joined: 12/06/2002 - 09:00

Karen, thank you for responding! I'm also glad to hear that you would take him to the hospital anyway.
Sorry for all the questions. Even though I'm a PA parent, I can never be certain of what another PA parent would do or why.

Posted on: Wed, 04/23/2003 - 11:30am
becca's picture
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Joined: 05/22/2001 - 09:00

Lisa, Nancy signed her name at the end of her posts in this thread. That is the only way I know her name. I was trying to reference my statement, as I was not sure where you were confusing things. I wanted to be clear that is what I thought you were referring to.
I do agree with *minimal* testing. My doctor only tested all because he was already having to do a stick for the eggs(we are without the MMR vaccination at present and it is important for us to check this one). He has never ordered blood or skin testing for the peanut allergy on its own, and would not have tested it if that were the only thing in question.
Also, I would not retest my dd frequently, personally, just to know the numbers. I figure every so many years, based on what *I* have learned about the allergy from well-known allergists at Boston Children's Hospital. My dd does look promising to be in the 20%(as much as anyone could, anyway). So, I do see value in knowing periodically. I would never want to stop carrying epipens, nor do I see us having peanuts in our diet. Would be nice to get a scoop of ice cream and not be so anxious about cross contact, though.
Anyway, it is personal, and I most certainly would not try to convince you to test your dd, since you know her hsitory and I do not. I do not want to come off as "test happy", but I do see its usefulness as well. becca
[This message has been edited by becca (edited April 23, 2003).]

Posted on: Wed, 04/23/2003 - 12:39pm
vegn67's picture
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Joined: 12/21/2002 - 09:00

Wow, all the posts here! LOL
No, i don't mind if my name is used here at all.
I did forget to ad that my new allergist is directly across from the hospital here, so that is always a plus! But i will never let her have an oral challenge again. My daughter is 4 years old, will be 5 in 2 weeks, and that oral challenge back in Feb. scared her. I don't blame her either. For some reason i don't see her outgrowing it, and if it did seem like she has, i still wouldn't trust it, it's way too risky.
Our new allergist also gave us a phamplet for foodallergy.com and suggested i join, and a mailing form for a medic alert braclet. I wish all allergist were like this one! If anyone in southeast PA needs a good allergist, let me know!
Nancy

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