Can\'t believe it! My letter made a difference!

Posted on: Wed, 03/28/2001 - 10:18pm
Mir's picture
Mir
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Joined: 02/12/2001 - 09:00

pI'm not sure which board to put this on, so I'm just going to put it here./p
pAfter a horrible experience with our (former) pediatrician after Isaac's first reaction... and the drawn-out process following in getting him diagnosed and treated... I finally wrote a letter to the pediatrician's office. I detailed our experience, highlighting the places where I felt their care had fallen short, and concluded that we would be leaving the practice but that I hoped this would serve as a cautionary tale and they would change their protocol and treat other families more proactively than they had ours./p
pA month has passed and I figured my letter had been filed in the circular file. Well, we got home from vacation yesterday and I had 2 messages from the Director of Patient Care at the medical center the ped's office is under. I just got off the phone with this lovely woman and I am walking on air! She apologized profusely for what we'd been through, agreed with me that the care had been substandard, and said she wanted to let me know that as a result of my letter, they have:br /
1) Distributed new food allergy information to all their staffbr /
2) Changed the protocol with which they handle food allergies (including an AUTOMATIC REFERRAL to an allergist when PA is suspected)br /
3) Scheduled several in-services for their entire staff to educate on the severity of food allergies!!!/p
pI still feel very comfortable with our decision to switch peds (our new one is in the same office building as the allergist), but I am SO GLAD that perhaps someone else will be spared what we went through. Every little victory counts, right?/p
pMiriam/p

Posted on: Wed, 03/28/2001 - 11:34pm
vic's picture
vic
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Joined: 11/30/2015 - 09:59

GOOD FOR YOU!!!!!!!!!!!!!!!!!

Posted on: Wed, 03/28/2001 - 11:41pm
katiee's picture
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Joined: 05/09/2001 - 09:00

Congratulations Mir, many people would have walked away, changed doctors and left it at that!
Your pro-active approach will save other families from experiencing what your's went through!
Kudos to you! Pat yourself on the back! You deserve it!
Regards,
Katiee (Wade's mom)

Posted on: Thu, 03/29/2001 - 1:35am
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Joined: 05/28/2009 - 16:42

Mir - that's great news! It's wonderful that someone else will benefit because you took the opportunity to voice your opinion!
You said you weren't sure where to post this - the Main Discussion Board is fine, but maybe you could also post it in the Doctors Forum. People checking there need to know this story!
When I first joined this board, back in July 2000, I wanted to write a similar letter and I got some good feedback, but I was still too intimidated to write it. You've inspired me! Perhaps it's not too late to send a letter.
When Cayley had her 1st severe reaction, I rushed her to the ER, and she was covered in hives and vomiting. She ended up having a triple dose of Benadryl, but no Epi. The ER doctor kept checking her mouth and throat for swelling - there was none, nor was there loss of consciousness (although in a previous anaphylactic milk reaction, she DID lose consciousness for 5 minutes).
The doctor told me:
(1) Keep her away from peanuts and PB
(2) You don't need an EpiPen
(3) It was not an anaphylactic reaction
(4) Just give her Benadryl next time she eats peanuts.
(5) You don't need to see an allergist - she's too young to be tested (she was almost 3)
!!!!!!!!!!!!
I had to fight with my family doctor to get an allergist referral (the allergist's office says they test much younger kids all the time), and the allergist assured me that vomiting and hives are anaphylactic reactions, and that Cayley has a "killer" allergy.
I wanted to write a letter to the ER to try to educate them on exactly what anaphylaxis is, but who am I to try to educate a doctor?!! Well, I'm someone who obviously knows more now than I did then, so I'm going to go ahead and write my letter!
Thanks for the inspiration, Mir, and congratulations on making a difference!! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

Posted on: Thu, 03/29/2001 - 1:52am
Going Nuts's picture
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Joined: 10/04/2001 - 09:00

KICK BUTT, MIR!!!

Posted on: Thu, 03/29/2001 - 5:44am
Mir's picture
Mir
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Joined: 02/12/2001 - 09:00

It's so nice to be able to share something like this and have everyone be just as excited as I am. I mentioned this to a friend (who knows very little about PA) today and she said "oh that's nice." LOL!
Anyway, thank you all, and at Cayley's Mom's suggestion I have posted to the Doctors forum as well. In my post there I've included the text of my letter. Cayley's Mom, I think it's NEVER too late to send a letter! Please do write one! You're the reason I decided to post the letter; in case it will help you (or anyone else) get some ideas for your own correspondence. I am really surprised that my letter was taken so seriously and believe you me I will ALWAYS write letters like this in the future without hesitation, knowing that it CAN affect change.
Miriam

Posted on: Thu, 03/29/2001 - 6:50am
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Joined: 05/28/2009 - 16:42

Thanks Mir! I noticed your thread in the Doctors Forum included the text of your letter. Thank you so much! I'm sure your letter will help a lot of people who otherwise may not think a follow-up would do any good.
I was LOL at the response your friend gave you. The way we act and respond in the safety of our PA "family" is nothing like the way we are in the "real" world. If we want support or rightful recognition for something, we have to come in here for our "fix"! Just remember next time your friend tells you something amazing - say "That's nice." LOL!

Posted on: Thu, 03/29/2001 - 11:20am
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Joined: 03/17/2001 - 09:00

WOOHOO!!!! Way to go Mir!!! I had a similar experience with my pediatrician that kept blowing me and my son off. After my son suffered for 2 and a half years with bleeding exzema, projectile vomitting, asthma,nasal congestion, and various other symptoms, I finally figured out that he was milk allergic. I immediately took him to an allergist and asked him to be tested. He tested him alright and for other food allergies. Well sure enough he was milk allergic and by a fluke found out he was severly allergic to peanuts. Of course I switched pediatricians and I did tell the other doctor off. It went in one ear and out the other. Congratulations!! I wish my Dr.s office would have done that. He still would have my son as a patient. Its sad to think that doctors who take the hypocratic oath don't seem to care enough. Kudos Mir!!

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