Frustrating visit to Ped.

Posted on: Wed, 02/09/2000 - 5:12am
Tammy James's picture
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Joined: 06/01/1999 - 09:00

We had an appointment today as a follow-up from our Sunday night ER visit. This particular visit was not from a peanut allergy reaction, but from something still 'unknown' at this time. Regardless, the Dr. we saw today told me something I have a hard time with. He said that the incessant, almost constant, coughing my son had was not, in his opinion, respiratory distress, and therefore not the time to use an Epi. He feels that there are 2 times to use the Epi: 1.) severe wheezing, struggling for breath, and 2.) almost at the point of fainting. WHAT?!?!?!? I keep telling myself, he's a Ped., not an allergist. Am I right in my being so surprised?!?! Also, he completely dismissed the hives, even though they were all over my son's face, mouth, eyes, everywhere. He said he doesn't worry about hives "They won't hurt him"... even if he's covered every inch with them, including his mouth. I was told differently by someone with lots of personal experience. Another point I'd like to bring up is, he mentioned that he thought it wasn't necessary to see an allergist for this. After he asked if my son was allergic to anything, and I said peanuts and tree nuts, he said, "Oh, well then, maybe you should see about getting an allergist." Now... this particular office has 12-15 Drs. and are regarded as the very best in this area. There are a couple Drs. there I trust and feel okay with, but this Dr. was one of them, until today. I'm on the fence about this office now. As always, your opinions and advice are welcome and greatly appreciated!!!! BTW, we are going to see an allergist!

Posted on: Tue, 02/15/2000 - 5:40am
EILEEN's picture
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Joined: 04/06/1999 - 09:00

This is similar ro the run around I had. Hives, no problem! I insisted on an allergits and the peds are still angry about it, tough.

Posted on: Tue, 02/15/2000 - 1:23pm
Chris PeanutAllergy Com's picture
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Joined: 04/25/2001 - 09:00

Hi Tammy, This is one of the reasons I started this forum. We are well aware that many doctors need more education on peanut allergy. We are hoping that more people post their experiences here, we have heard from many about their bad experiences and we hope that by posting some of our experiences that doctors, lawmakers etc. that use these boards will see the need for more education and training.
We are putting together a list of doctors for us to contact that appear to need more education on this allergy (so if you know of any send in their contact info so we can add them to the list), when we have the funds necessary we will be pursuing educating these and other doctors etc. who need more education. If you can help find funding for this issue/and or want to work on it, contact me! If you have not joined as a member and sent a donation please do asap!
We need to help as many others as possible to not be at risk because of a doctors lack of education about this allergy.
I do not like to hear from parents who have lost their children that they were never told about Epi-Pens!!!
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Stay Safe,
[email]"Chris@PeanutAllergy.Com"[/email]
I am adding a link to the form so you can let us know you want to be a member and so you can let us know how much you will be sending as a donation to help us work on these important issues. Please fill out the form and send your check. This will help us not to have to do more work to remind you. Any work you can save us is helpful and allows us time to work on these important issues.
Stay Safe,
[email]Chris@PeanutAllergy.Com[/email]
Contact info form page/please fill out [url="http://www.peanutallergy.com/formpage.htm"]http://www.peanutallergy.com/formpage.htm[/url]
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[This message has been edited by Chris PeanutAllergy Com (edited February 15, 2000).]

Posted on: Fri, 02/18/2000 - 2:42pm
casey's picture
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Joined: 02/18/2000 - 09:00

i know your frustration! my ped takes my sons peanut allergy very seriously, and tells me that any swelling to the face/mouth area...epi pen and call 911. Simple as that.
Their little airways can block off so quickly that you need to stay on top of it, hang in there! Good luck with the allergist.
casey

Posted on: Fri, 05/12/2000 - 12:10am
BISHOPA's picture
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Joined: 05/09/2000 - 09:00

I know how you feel about pediatricians. The first time my son had a reaction to peanuts was about 2 yrs ago. (He is 3 now) We were in the grocery store & went to get his free cookie at the bakery. Instead of a sugar cookie, the lady gave him a peanut butter cookie. Within minutes, his face had blown up like a balloon, his eyes were swelling shut,and he was crying & coughing. We rushed him to the doctor's ofc. She gave him Benadryl. The only thing she said was that he must be allergic to peanuts so don't give him peanut butter. Then she then sent us on our way. Sometime after that episode, I had to change pediatricians. Our new doctor was a little better. He prescribed epi-pen and explained what to watch out for. I am taking my son in next week to get a referral to an allergist, at my request-not the pediatrician's. Of course, my company just changed insurance companies and I have to find a new doctor. (Hopefully one who takes PAs very seriously.)
------------------
Alison
[This message has been edited by BISHOPA (edited May 12, 2000).]

Posted on: Fri, 05/12/2000 - 9:41pm
Anonymous's picture
Anonymous (not verified)

We had the same run-around. We had to force the PA test and at that, once it was positive, we were given an Epi-pen and told to use it only when signs of severe respiratory distress appeared! Three years later we learned that if we did that, her chances for fatal anaphylaxis increased dramatically! Fortunate for us, she had her first reaction in 3 years two weeks after we discovered this. We have since changed allergists.
Andrea

Posted on: Tue, 07/18/2000 - 1:09pm
anonymous's picture
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Joined: 05/28/2009 - 16:42

I am wondering if anyone has followed up a visit to the ER with allergy information regarding anaphylaxis for the attending doctor. We didn't know my daughter was allergic until she licked some PB off a knife. Within 30 seconds she said her tongue was burning and hives developed on her face. A minute later she was clutching her stomach and vomiting. She was also very agitated, squirming in my arms and doubling over.
I gave her Dimetapp Allergy medication, which she promptly vomited. I rushed her up to the ER in our small town, Ontario hospital. She was seen immediately and given a double dose of Benadryl, which she kept down for about 5 minutes before vomited again. The doctor decided she didn't need another dose, because her hives were clearing up, and she had kept the Benadryl in her system for the 5 minutes.
After keeping her under observation for 2 hours, we were released. I had to ask the doctor what we should do in the future if she came in contact with peanut products, because he didn't volunteer any information. He also said that it WASN'T an anaphylactic reaction because her tongue and throat were not swollen, and we didn't need an Epi-pen, just more Benadryl. I understand an anaphylactic reaction involves at least two of three systems - skin, digestive and respiratory. She clearly had a life-threatening reaction which will probably be worse the next time.
I called my family doctor to set up an appointment with an allergist, but the nurse told me that they don't like to do allergy tests on children under 4 years (my daughter was almost 3 at the time). I had to call the allergy clinic myself to see if I could get information on PA, and they informed me that they test very young children all the time.
When she was finally tested the allergist told us to get 2 Epi-pens, that her reaction was anaphylactic (his exact words were "killer allergy" and "life-threatening"). I need to tell the attending ER doctor of his mistake, but I'm not sure how to go about it. I HAVE to let him know what anaphylaxis is so he won't endanger the life of another child by downplaying the allergy.
The pharmacist also told us to use Benadryl first and not to use the Epi-pen unless there are signs of respiratory distress. All the literature I've read on the subject says the exact opposite - first Epi-pen, then Benadryl and DON'T wait for signs of breathing trouble because it might be too late to reverse the reaction.
If I know these things from several weeks of researching, why don't health professionals know how to treat anaphylaxis after years of education. It is scary and frustrating. Can someone please let me know how to proceed without putting these health professionals on the defensive (they don't seem to listen to you when you go on the attack).
I'm new at this PA thing, and don't think I'm timid, I just want to do things calmly, persistently and thoroughly. Any good/bad experiences on followups would be appreciated.

Posted on: Tue, 07/18/2000 - 4:56pm
rilira's picture
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Joined: 11/11/1999 - 09:00

We have not visited the ER but I was disappointed when we first saw our allergist. Actually I wasn't disappointed until later when I actually educated myself on the topic. The Dr. only advice was get an epi pen and avoid nuts! Well we had to go back to see him to get a plan approved for my daughter's school. I was nervous and not to thrilled to go see "the moron" again. I took a manilla folder full of xeroxed articles and highlighted what I felt where important topics. He reviewed our school plan skimmed the articles and couldn't believe all the research I had done. When I left the appointment he shook my hand and said "thank you for educating me today". It felt great! I think because I presented the material as this is what I have learned instead of this is what you should have told me. It was well received.

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