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What the NIMH webpage should be...


Buster

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Amazing job - thanks, Buster. Can you add "throwing-up" to the anorexia list: Anorexia (particularly fear of choking, being poisoned, contamination fears, throwing-up). I have spoken to so many PANDAS parents that mention this particular fear. That was our central contamination fear - anything could make her "throw-up", logical or not. This was the central reason she would not eat.

I can. Any paper you've run across that cites it?

 

No, I don't - it is frequently listed in OCD signs, but I can't find a % in a research paper. Maybe tomorrow when I am not so wiped. But as I have been thinking about this today, I suppose that I am really just talking about contamination fears - as opposed to an older child that might fear something more like a specific disease (AIDS), young kids tend to think of this as the worst end result. But all of the fear of throwing-up was around contamination - whether by spots on food, red marks, black marks, chemicals, germs, high levels of sugar - it was never body image, it was always fear of illness. So I'd retract & say that contamination fears covers it.

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I'll go for EAMom's suggestion to pull the percentage. I think this will work. We'll see.

 

Buster

 

 

Amazing job - thanks, Buster. Can you add "throwing-up" to the anorexia list: Anorexia (particularly fear of choking, being poisoned, contamination fears, throwing-up). I have spoken to so many PANDAS parents that mention this particular fear. That was our central contamination fear - anything could make her "throw-up", logical or not. This was the central reason she would not eat.

I can. Any paper you've run across that cites it?

 

No, I don't - it is frequently listed in OCD signs, but I can't find a % in a research paper. Maybe tomorrow when I am not so wiped. But as I have been thinking about this today, I suppose that I am really just talking about contamination fears - as opposed to an older child that might fear something more like a specific disease (AIDS), young kids tend to think of this as the worst end result. But all of the fear of throwing-up was around contamination - whether by spots on food, red marks, black marks, chemicals, germs, high levels of sugar - it was never body image, it was always fear of illness. So I'd retract & say that contamination fears covers it.

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Dear Buster and everyone,

 

To cite the "risk/benefit ratio" phrase, think about which is more important to you, to help your kids and other kids:

 

Worrying about RISKING "alienating" the "medical community", by posting the FACTS that vaccinations can sometimes worsen PANDAS,

 

OR

 

Having the BENEFIT of spreading that information, so that PANDAS (and other) parents can make more informed decisions, about whether they (always or ever) want to have their children vaccinated or not, from now on.

---------------

 

Years ago, I spoke with a doctor, while riding up on a chairlift at a ski area near my home, about vaccination dangers. The doc was from another state, and felt free to tell me (I'm a retired nurse), that many MD's he knew, were very leery of getting their own kids vaccinated, but the docs kept their worries to themselves. WHY? Because they were afraid of being branded "kooks" (blackballed), by the AMA (American Medical Association)!

 

So, my point is, that the medical community ITSELF, is divided on the risks of vaccinations.

 

For the sake of scientific accuracy, and for the sake of helping children, I hope you all won't be intimidated by the fear of telling the truth about the risks of vaccinating PANDAS children, to those who are in denial, for whatever various reasons, about the vaccination risks.

 

Just remember too, that when we were young, Pluto was a planet. Not any more. "Facts" change, as more is learned.

 

P.S. I also like anecdotes, because these anecdotes represent real cases, that may take decades or longer, for "the medical community" to take seriously, and to act on.

 

Anecdotes can lead to thinking even more 'outside the box', leading to more helpful discoveries (for example, how when a gluten sensitive person with some type of tic disorder finds that inadvertently eating gluten caused an increase in tics--this could lead people to investigate the possibility of them having some kind(s) of food protein "sensitivities", that they may not have previously suspected.)

 

Sincerely,

Carol

http://cantbreathesuspectvcd.com

 

______________________________________________________

 

 

Despite that, I think we need to make it as simple and clear as possible- w/ the internet, parents who are trying to figure this out will easily be able to find sites like this one that elaborate more. If you get too anecdotal it will not be acceptable to the medical community and rejected by NIMH. And though I suspect vaccines played a part in all this for my daughter- that seems to be a political hot spot that is guaranteed to make people not take you seriously. I don't want that debate to taint this issue. We can do talk about that here with each other and try to find research on it and what not- but it seems nothing says "kook" to the medical community more than someone questioning those sacred shots!!

Great point!

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I also think that steroids should be mentioned as an option for a treatment as well as a diagnostic tool...it is just one more thing that a dr would be willing to try if it mentioned on the website...each PANDAS case is unique, and all options should be on the table.

 

My ped prescribes prednisone for skin rashes, allegies and asthma all the time...but when I told him that Dr. L thought prednisone should be prescribed, he was very reluctant because he didn't have any experience with it and PANDAS....if the NIMH website briefly mentions it, then more drs might be willing...and possibly shorten the recovery time after the onset.

 

His argument was valid...If there is brain inflammation, can we be sure with an MRI prior to prescribing the pred? So I told him to order the MRI...it never got that far because we hightailed to Dr. Latmer, and she prescribed the pred.

 

But we were fortunate that we were able to be fit in within the week....waiting to see specialists can sometimes be too long.

 

By the way, GREAT JOB!...I really hope we can get the website changed. Let me know if there is anything concrete like sending an email or making a phone call that could help get it done!

 

~Karen

 

Well, I see my child, but I do know there are some who never had a documneted strep infection.

 

If I had to look for something to change, add, etc, it would the use of the steroid burst. You say it is used as a diagnostic tool, but some have seen it stop an exacerbation in its tracks and not resurface after the steroid. Others have seen it aid the recovery. I know if my son gets strep again, I am begging for a steroid. I've seen the difference in recovery times for him w/ and w/o a steroid. But, then, if there no research to back it up, they probably won't add it.

 

I actually think the anorexia is higher than 2%.

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I'm certain the NIMH will not officially post vaccine warnings, especially since the Scientific evidence is not there. Here, on this site, on FAQ, in posts- no problem. We can do our part to help parents make careful vaccine decisions, but as far as official govt. sponsored sites, IMHO we need to leave it off.

 

Dear Buster and everyone,

 

To cite the "risk/benefit ratio" phrase, think about which is more important to you, to help your kids and other kids:

 

Worrying about RISKING "alienating" the "medical community", by posting the FACTS that vaccinations can sometimes worsen PANDAS,

 

OR

 

Having the BENEFIT of spreading that information, so that PANDAS (and other) parents can make more informed decisions, about whether they (always or ever) want to have their children vaccinated or not, from now on.

---------------

 

Years ago, I spoke with a doctor, while riding up on a chairlift at a ski area near my home, about vaccination dangers. The doc was from another state, and felt free to tell me (I'm a retired nurse), that many MD's he knew, were very leery of getting their own kids vaccinated, but the docs kept their worries to themselves. WHY? Because they were afraid of being branded "kooks" (blackballed), by the AMA (American Medical Association)!

 

So, my point is, that the medical community ITSELF, is divided on the risks of vaccinations.

 

For the sake of scientific accuracy, and for the sake of helping children, I hope you all won't be intimidated by the fear of telling the truth about the risks of vaccinating PANDAS children, to those who are in denial, for whatever various reasons, about the vaccination risks.

 

Just remember too, that when we were young, Pluto was a planet. Not any more. "Facts" change, as more is learned.

 

P.S. I also like anecdotes, because these anecdotes represent real cases, that may take decades or longer, for "the medical community" to take seriously, and to act on.

 

Anecdotes can lead to thinking even more 'outside the box', leading to more helpful discoveries (for example, how when a gluten sensitive person with some type of tic disorder finds that inadvertently eating gluten caused an increase in tics--this could lead people to investigate the possibility of them having some kind(s) of food protein "sensitivities", that they may not have previously suspected.)

 

Sincerely,

Carol

http://cantbreathesuspectvcd.com

 

______________________________________________________

 

 

Despite that, I think we need to make it as simple and clear as possible- w/ the internet, parents who are trying to figure this out will easily be able to find sites like this one that elaborate more. If you get too anecdotal it will not be acceptable to the medical community and rejected by NIMH. And though I suspect vaccines played a part in all this for my daughter- that seems to be a political hot spot that is guaranteed to make people not take you seriously. I don't want that debate to taint this issue. We can do talk about that here with each other and try to find research on it and what not- but it seems nothing says "kook" to the medical community more than someone questioning those sacred shots!!

Great point!

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