Disturbing Article

Posted on: Fri, 02/02/2001 - 2:45am
Tina H.'s picture
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Joined: 10/13/1999 - 09:00

pI just read an article linked on these boards about fatalities with PA. The doctors studied 32 deaths associated with food allergy. What shocked me was that 4 out of the 32 had been treated with epi and still died. That's one out of eight! I was told when my darling daughter was diagnosed 8 years ago that epi almost always will save lives. I was led to believe that it is extremely rare to have a fatal reaction if epi is administered immediately. This report has scared the daylights out of me. Does anyone have any input on this?/p

Posted on: Fri, 02/02/2001 - 4:26am
marla's picture
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Joined: 01/15/2001 - 09:00

Tina, I agree that these cases are scary. I have not experienced a situation with my son where 2 epis were needed, but I do have a friend who had that experienc--and got to the hospital in time. Here in my town a high school boy died 18 months ago from nut/peanut allergy. In that case 1 epi was not enough, but I was told that the allergic reaction was aggravated by his having a bad asthma day that particular day; I think that if you have food allergies and asthma you really have to be careful. The asthma has to be kept under control, and it's probably good to always have an extra epi.

Posted on: Fri, 02/02/2001 - 4:27am
Wilton's picture
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Joined: 12/15/2000 - 09:00

Tina H.,
Be careful how you interpret the numbers. 4 of the 32 subjects in the study received epi in time and still died. However, the study doesn't look at how many were SAVED by the epi shot - which is probably hundreds or thousands. So, for 4 people out of hundreds or thousands, a timely epi shot was not sufficient to counteract the allergic reaction.
I've seen other reports where a single epi shot was insufficient. But while a timely epi shot is not a 100% guarantee, it DRAMATICALLY increases the probability of survival.
Wilton

Posted on: Fri, 02/02/2001 - 4:31am
Tina H.'s picture
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Joined: 10/13/1999 - 09:00

Thank you for making me feel better.

Posted on: Fri, 02/02/2001 - 5:31am
Joanne's picture
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Joined: 02/22/1999 - 09:00

I also initially got quite upset when I read that 4 out of the 32 received epinephrine within a short time frame, because there seemed to be such confidence that timely epi would always be life-saving. Then I tried to unscare myself.
The article also says that there are an estimated 30,000 incidents of anaphylaxis per year and 150 fatalities. So 99.5% of the time the anaphylaxis was not fatal.
Also, the problem for me with a lot of these studies is that the sample pool is so small, as I believe was pointed out in the article, that you have to be careful drawing conclusions. But the way I figured it if these 4 were the only 4 fatalities with immediate use of epinephrine out of 30,000 incidents then that's a 99.987% nonfatality rate. And if the 4/32 rate is indicative of all 150 cases then that's still a 99.938% nonfatality rate.
That said, it's still pretty scary for me when it's my child in this risk pool, with asthma giving him an even higher risk.

Posted on: Sun, 02/04/2001 - 8:43am
supermom1023's picture
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Joined: 01/12/2001 - 09:00

My daughter's allergist had always told me to give my daughter epi if I even thought she had eaten peanuts. My daughter is also touch sensitive and had terrible hives last week after being around a large group of kids. After returning from ER (where we saw an ER doc who was wonderful. He gave her benadryl through an IV push and also more epinephrin). her hives got really terrible. We called the allergist and he said to just let her sleep and watch her to make sure she didn't stop breathing. The next night she started to have bad hives again and my husband called the allergist. He said she was OK but he seemed really angry at my husband for calling. It was about 11:00 pm.
We took her to his office the following day and he got really hateful. He said not to ever give her the epi unless she was having trouble breathing or her lips turned blue and such. He said they rebound from the epi and it makes the symtoms worse when it wears off. This is totally opposite from what he told us from the start. Do you think he told us this because he was angry? He wasn't so nice when he talked to us. We certainly don't agree with this and we are going in search of a new allergist. There is only one other in town so we will probaly take her to Memphis or Little Rock(AR). Please tell me what you think and would you trust this drs. advice?

Posted on: Sun, 02/04/2001 - 11:57am
Kathy Spencer's picture
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Joined: 08/17/2000 - 09:00

Supermom,
I would take my child to the allergy department at Arkansas Children's Hospital asap and follow their advice. They have saved my PA child's life. Not all allergists are experts at PA. My son and I found this out the scary way (with his anaphylaxis induced by another allergist in Little Rock during a peanut scratch test). The doctors and nurses at ACH got us back on the right track, and I trust no one else around here. Good luck!

Posted on: Mon, 02/05/2001 - 6:25am
Frances's picture
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Joined: 11/28/2000 - 09:00

Your experience with the allergist sounds awful. I have never heard of any risk from giving an epi injection when it wasn't warranted. My allergist has said that if an error has to be made--you are much better giving the epi (even if it isn't clearly warranted) then not giving it. He said it may make my child hyper--but it won't harm him. The other thing we do routinely as part of his PA emergency plan--is give him several puffs of his inhaler. My allergist believes that you should do a multi-system sort of response. I am sorry for your experience. Any sort of anger like that from a physician is unacceptable! Particularly with an issue like PA where it is not just a simple issue--it has many levels and one of them is the emotional component of living day to day in a peanut/nut sort of world and knowing that a potentially fatal danger lurks everywhere! That is a very difficult feeling to come to terms with and any Dr. who has some experience and an ounce of compassion and common sense, would realize this!

Posted on: Mon, 02/05/2001 - 2:26pm
supermom1023's picture
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Joined: 01/12/2001 - 09:00

Frances, thanks so much for you input. This website is the only thing that has kept me sane this past week. The allergist also told us that as Sara gets older the epi could cause some heart problems. I know her heart races but I don't want to risk her life by not giving it to her. Maybe he was upset because she hadn't actually eaten a peanut product but she is allergic to touch and the reaction started when she was around a very large group of kids. It was the worst reaction we've seen and I know it had to come from skin contact.
Kathy, I think I read about your son's reaction on another thread somewhere and I wrote back and asked about an allergist. We've pretty much decided to take Sara to Children's to see the doc that's on the board of FAN. Little Rock is about 3 hours away and Memphis is not much more than 1 1/2 hours so I was really hoping we could find a doc in Memphis because I would be able to take her by myself without my husband having to take an entire day off work, we live in Jonesboro, and I don't feel comfortable at all about driving to or in Little Rock. Is this the dr that your son sees? Do you think the one see would be faster to get an appointment with than the one I heard about?
I was told today by someone who's nephews have been at Childrens that they like to do alot of experimental treatments there. Have you seen that in your visits? I know someone else who had a really bad experience there, a total nightmare about the way she cared for her child. I've heard much more good than bad, but with the ordeal with her allergist last week I guess I'm just being really nervous.

Posted on: Wed, 02/07/2001 - 6:15am
Kathy Spencer's picture
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Joined: 08/17/2000 - 09:00

Supermom,
My son has seen the doctor that is on FAAN's board, and he is great. Most of the time, Matthew has seen one of his colleagues, Dr. Wheeler. However, Dr. Wheeler has changed departments, and Dr. Harville, who is relatively new to Children's, saw Matthew for the first time in December. I was hesitant at first, because we felt so "safe" with Dr. Wheeler (and because I resist change in general), but Dr. Harville really impressed me. I think he also has a specialty in rheumatology, in addition to allergy and immunology. He spent -- literally -- hours with us, answering my questions and giving us more straight facts about Matthew's allergies and general condition than anyone ever had. When we first brought Matthew to Children's, he was in bad condition overall. Now, he's so healthy, one would have to know his history to know that he has this allergy, asthma, and multiple drug allergies. I am very, very happy that we took him there.
As for experiments, we've never experienced any problem. Several times, Dr. Burks and his staff have asked Matthew if he would like to donate a few vials of blood for his research. Matthew doesn't mind needles, and readily agreed. But he or I could have said no, and there would not have been any problem. I am too afraid, however, to permit Matthew to participate in the HU-901 trials, because he would have to be exposed to peanut. They've never tried to talk him into doing so, either. In fact, the only kind of allergy test they'll give him is the RAST test.
I hope you have as positive an experience at Children's as we have had. I really hope to hear from you how it went.

Posted on: Sat, 01/26/2002 - 1:05am
CVRTBB's picture
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Joined: 11/23/2001 - 09:00

I fired off a letter to the man that wrote this article... probably doesn't sound very good as I was extrememly angry when I wrote it... but here it is:
Mr. Lenard,
I just read your article and had to respond. Do you have children? If your child was allergic to bees and you knew that a bee sting could cause almost immediate death would you put your child on an airplane with a bee flying around ... just hoping and praying that your child didn't get stung?? OR would you do everything in your power to have the bee taken off the plane before you got onto it to be sure your child was safe... EVEN IF it was a minor inconvenience to the other passengers?
I have 2 children who are severely allergic to peanuts. One child that could die just from the SMELL of peanuts. Is it more important that you have a little bag of peanuts or that a child loses his life so that you can eat them? I can understand where you are coming from... I had always enjoyed peanuts, and I also have a lot of "allergies". The difference with my allergies and with yours is that they are NOT life threatening. We would not go into anaphalactic shock and die from them... my son would die from the fumes of a single peanut. I'm sure that you must not have been aware of the severity of a peanut allergy or you would have never written this ridiculous article.
Valerie

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