Allergist says no to carrying EPI

Posted on: Wed, 09/01/1999 - 10:09pm
FDC's picture
FDC
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Joined: 09/02/1999 - 09:00

My son is 10, and we haven't had him tested in years. We thought he should be tested again and were told about a Pediatric Allergist in our area. When we had our visit we showed him his EPI pack that he wears on him in a Fanny pack at all times with his Benadryl. He said that was fine. He wanted to skin test him immediately. I told him I wanted him to be RAST tested. That we already expierenced anaphy. reactions in the past and were recommended in the past not to have him skin tested out of fear of a severe reaction. He was not happy with that we went back and forth and we agreed that the first would be the RAST and if that came out negative I would agree to a skin test and then possible oral challenge. My son has not had a reaction that was severe in 3 years. The last one was by cross contamination in a donut. I asked him to sign all the papers for school, I forgot to have him sign the one with permission to carry his EPI. WEll I called two days later and asked his nurse to fax the school the permission slip. The school called me and told me that the MD's office called and told them that he couldn't carry his EPI pack on him!!!!! The nurse told me either they would have to take the EPI pack away from him or I would have to pick him up well I choose to pick him up........
It was a day from .... My son was upset and frightned over the thought of having to give up his own piece of mind.
I tried to reason with him, he felt it was a danger to other people for him to carry this on him. He referred to FAN and said they agreed that it was best if the EPI was left in the hands of a teacher or nurse.
I removed my son and called his PED.MD and she graciously agreed to send in the permission slip to carry BENADRYL and EPI, but not the PREDISONE. She was in shock that this Allergist would not agree.. It is known that that is the one thing a child must do to protect himself when he is old enough to carry.....
Sorry for rattling,,,just needed to get it off my chest.
Thanks for listening.

Posted on: Wed, 09/01/1999 - 11:09pm
Lynda's picture
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Joined: 03/08/1999 - 09:00

pAgain I am really starting to wonder why I bothered joining FAN and wasting my money on an organization that seems to do and say things that are of no help to our cause. Lynda/p

Posted on: Wed, 09/01/1999 - 11:34pm
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Joined: 02/17/1999 - 09:00

pI also cannot imagine leaving my child without the comfort/security of the epi-pen. My allergist has said that even if another child activated the pen on himself, the reaction would not harm him unless he already had severe heart problems. I am glad your pediatrician signed the form./p
pFaced with your allergist's response and the knowledge we have, I might consider contacting the licensing board to query your allergist's behaviour re: the epi-pen. This behaviour could have serious consequences for other patients. Of course, you would have to find another allergist!/p
pIt is so hard to deal with the constant battles we must take on sometimes. Take care of yourself./p

Posted on: Thu, 09/02/1999 - 12:28am
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FDC
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Joined: 09/02/1999 - 09:00

pI told the allergist that I wanted him to forget he ever saw my child and that he was never to even mention my son's name or discuss him to any other MD without my permission. /p
pHe also told me that none of his other 10 peanut allergic children carry their EPI./p
pI think I just may further my investigation on this MD. He is one of only 2 Allergist in my area and I do know that their are other children that are PA but I can't seem to find them....... The schools will not disclose who they are. /p
pLast nite we had my son's open house and two "mothers" approached me about "the peanut situation" They were "Appalled at the thought that my son was walking around with a HYPERDERMIC NEEDLE (ex.sp.) on him" I patiently explained that this was not harmful to any one else and that it was pre-injected and can't ever be used for anything else. Well I am waiting for another issue to hit soon. /p
pBut you are right I am not too happy with the ever powerful FAN these days either./p
pThank you for your support, it is well appreciated./p
p------------------br /
FDC/p

Posted on: Thu, 09/02/1999 - 4:26am
EILEEN's picture
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Joined: 04/06/1999 - 09:00

pWe have to try and find some way to persuade FAN that its statements and policies are harming some of us. I can't take the "smile you have peanut allergy, isn't it so easy to avoid" line anymore./p

Posted on: Thu, 09/02/1999 - 4:57am
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Sue
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Joined: 02/13/1999 - 09:00

pI was a member of FAN (paid my dues) - but I am not signing up again - Peanutallergy.com is getting my membership fee. /p
pFAN appears to forget that so many allergies and children are different and need different levels of intervention. This intervention should be determined by the parent with the doctor's help. NOT BY FAN./p
pTheir statements are getting out of hand and are being used against us when we try to do the best we can for our children. Their last newsletter was anything but helpful (see my post under the MEDIA subject)./p
pBetween Chris and my searches on the WEB - I don't need FAN until they stop putting out information that puts my childs life in danger - besides, what do they do besides sell things on their site? They even charge you for EpiPen trainers that you can get for free from DEY? O.K. I'm done venting./p
pSorry to ramble, but who else can I vent to besides my friends here on the board?/p
pSue in Sunny Arizona/p

Posted on: Thu, 09/02/1999 - 11:54am
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FDC
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Joined: 09/02/1999 - 09:00

pIf it wasn't for this site I swear I would be lost....I would love to do something to make them understand....Their influence is to strong and I truly believe that they are being pushed to the "other side" from some influential people.... I don't know I just know that your right This site will have my support........Thanks for letting me vent!!! The principal of my son's school told me I was treading on new ground and it would get rocky...How right she is...Next year is middle school and that is really going to be a challenge..../p

Posted on: Thu, 09/02/1999 - 10:22pm
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Joined: 03/08/1999 - 09:00

pSue I agree with you....I too paid my membership to FAN and have gotten nothing helpful except for the things that I have purchased. I am also not signing up with them again and will send my membership fee to Peanutallergy.com. At least here, I find experience, strength, and hope. Lynda [img]http://client.ibboards.com/peanutallergy/smile.gif[/img]/p

Posted on: Thu, 09/02/1999 - 10:44pm
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Joined: 08/30/1999 - 09:00

pFDC-Because of your sons allergy he falls under the rules of a 504 plan. By law your school should have a plan set up. My son 9 also has peanut allergy, however he is in special ed., and a self contained class. I am very lucky in that my school is very aware of the difficulties and underlying fear every time we send our kids to school. My sons emergency plan is laid out in his IEP. If there was no IEP there would be a protocol in a 504. His teacher is also an EMT and willing to carry an EPI for him. I am very luck. Good Luck. Please change allergists and check his licensing. He sounds like a loser./p

Posted on: Fri, 09/03/1999 - 10:49am
FDC's picture
FDC
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Joined: 09/02/1999 - 09:00

pMy son does have a IEP and only this year does it include his peanut allergy. Before this year I was unaware that his PA could be a part of it. He has some trouble in reading and that is what we addressed. Until I had a teacher ignore his symptons, I then learned all about what I wasn't being told..This year the teachers have been great and the support of the school has been the same, it is just the MD and I am going to check into his licensing.br /
Our children must be protected and armoured with all the meds necessary to save their life.....Thanks to you all!!!/p

Posted on: Sat, 09/04/1999 - 7:22am
Anonymous's picture
Anonymous (not verified)

pmy daughter started kindergarten this year and I didn't realize how lucky I have been. My first meeting with the school consisted of the director of nursing for the district telling me how important she felt it was for meds to always be available. She feels all kids by second grade should be carrying their own meds.My daughters teacher showed up on the first day of school with a beautifully decorated fanny pack that she (the teacher) carries at all times with my daughters epi-pen in it.The custodian even approached me with a list of all plants and trees in the kindergarten area just in case he said. I am so lucky and want everyone to know there are some great people out there./p

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