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My IL's are deeply involved with the SJS Foundation. This is a link to the Steve Johnson Foundation. http://www.sjsupport.org/julie.shtml This little girl, Julie, is my DH's 2nd cousin.

No one has an accurate count of the cases of SJS. It may be more prevalent than thought, IF there was a way to report and record these reactions... But where's the $ to do all of this. If ever you were to contribute to a worthy cause, this is one of them. There is so much still unknown about SJS. Drug reactions are one of the leading causes of death in the United States. Because there is no mandatory reporting system in effect for post- marketing adverse drug reactions less than 1% are reported to the FDA... And even then how good of a job is the FDA doing? Look at the Vioxx scandal.
 

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Discussion Starter · #3 ·
I posted that on another site and just got a bunch of "well it sounds like just an allergic reaction. Horrible, but that could happen with anything" kind of deal. Which is fine - but I guess I was really thinking - its scary, yah know? I'm not as educated on it as you are, but when my mother sent me that link I was a bit alarmed about that, and any other mediciation I've given my baby. I mean...thats a small part of the reason why I don't do drugs, etc at birth..the "what if's" aren't secure enough for me. Thanks for the additional info!!

There was a news report here not too long ago about how many scientists don't feel that the FDA is doing a good job - by any stretch of the imagination.
 

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Stevens-Johnson is one of the most severe allergic reactions one can have. It is an awful, horrible condition.

But I do agree that there is likely nothing special about Motrin/ibuprofen that caused it in this case. Many, many drugs can cause it.

The unfortunate thing is that so many parents believe they need to give their kids drugs for a fever, virus or whatever. Of course I don't know these particular people, maybe it was felt necessary in that case. So very sad.

OT, but I was very leary of giving a child ibuprofen even before this, as it can have all kinds of side effects in adults. Stomach ulcers and gastrointestinal bleeding being some of the worst. Personally for OTC meds I would never use anything other than a small dose of tylenol, if that.

What could the FDA have done to prevent this case? Or the problems with Vioxx? I think people expect everything to be perfect sometimes. yes there should be safeguards, but all drugs are potentially dangerous. Just most medical people and people in this society are way too cavalier about using them, IMO.
 

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OH NO!!!! My little boy has been sick and thats what I gave him... mind you it was a few days ago....
I never usualy give him anything... well I'll be trowing the rest out...
thanx mammas
 

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My point about the FDA wasn't that they could have prevented this case that was reported by ABC a couple of days ago. Nor that they could have prevented the problems with Vioxx, rather that "the FDA is responsible for protecting the public health by assuring the safety, efficacy, and security of human and veterinary drugs" (taken from their mission statement). One has to wonder just how long the Vioxx/heart attack correlation was known, documented, pushed asside before it was splashed across the front page of every newspaper.

No one thing or person is perfect. I am not trying to demonize the FDA, OTC drugs, the gov't, or "big brother"... My point was that if there was a better way in which to report these cases of SJS or TENS that maybe there would be great strides taken to recognize, treat, combat, maybe even one day CURE SJS.
 

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Motrin is *NOT* the catalyst for everyone when they have a severe allergic reaction or develop SJS. For this little girl in the story, it was... For Julie, it was pheonalbarbital (sp?) she was taking after having a grand mal siezure. The siezure was not the reason she developed SJS, just the reason she was given the Rx that caused the onset of SJS.

If one is predisposed to allergic reaction, mild or severe enough to be diagnosed SJS, no one will no what the specific catalyst is until you are in the midst of a crisis... minor or major.

This story should have been more about SJS rather than demonizing this particular OTC drug. It could have been Robitusson, Tylenol, Benedryl, ect... that could have been the culprit in other circumstances.
 

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Discussion Starter · #9 ·
I guess I just feel that the FDA gives people a false sense of security...and that just bothers me...they aren't perfect - although I think people (especially some around me) seem to think they are. I dunno....I can't say that I honestly feel that they are to blame, or that Children's Motrin is to blame for what happened in this case even. I find the info a helpful reminder....

I'm not positive, but if you've already been giving your Children Motrin and have had no side effects...you're probably okay. My intention was not to scare I guess. Sorry!
 

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Oh, I know where you are coming from, Desdemona. I think it is unfortunate, too that the system is not better. Some people criticize the FDA for making it too hard for new, lifesaving drugs to get approved. But then there are many, many cases (Vioxx is just one of the ones that made big headlines, but actually it seems there is a drug pulled every year or two because it really hurt people whereas in the initial drug approval studies on many fewer people, it looked so good on paper) where the system fails miserably and too many people get hurt before the connection is made.

I am very sympathetic to people whose kids have had problems with medicines. I hope I didn't seem mean in my post. I think if someone feels comfortable with OTC meds and feels they have a legitimate reason to use them, then that's fine. I have given tylenol a few times for bad teething, and I know there are some mamas on MDC who think it is toxic and would never give any allopathic medicines to a child. When I wrote my last post I was thinking more about how my relatives or even pediatrician suggest medicines as the answer to every little sniffle, ache or pain, or even diaper rash when ds was a newborn.
 
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