What the NIMH webpage should be...

[smartyjones]

i guess that really makes a difference if the intended audience is NIMH to people who are 'in the know' of terms and situations or if it is a piece to have on their website for the layperson who is searching for info. my assumption was you were making a recommendation for their website to educate the layperson. was your intent to educate NIMH?

 

in the early days, i, obviously, didn't find the NIMH info so helpful, but did find Dr. K's website helpful. perhaps this is the difference in the 'dumbing down' for general parents, where i'm most comfortable .

 

i'd like to see a bullet for anxiety, phobia and unfounded fears in and of itself. still - i'm not so sure my son has the 'complicated web' of OCD - he's able to separate from the anxiety and phobia if he's not directly in it. may remain to be seen in the future but currently psych seems to just deal with immediate anxiety reaction and he can get out of it without getting into investigating OCD thoughts. is that supported in your studies or only anxiety related to OCD? i know OCD is an anxiety disorder but just a mention of unexplained anxiety or phobia that doesn't seem to have a correlation to a thought?

 

he presented with ODD - i didn't know what that meant but i guess if i saw it in a list related to pandas, i could figure i should google it based on those 3 words.

 

i wouldn't have known the term 'Tactile/sensory defensiveness'. he had extreme reactions to loud and sudden sounds. dr. k says 'increased sensitivity to light, and/or sound, and/or touch, and/or smells.

[thereishope]

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%.

[sww817]

I can recognize my child from the signs and symptoms. But we did not have a documented strep until we believe much later after onset. Initial episodes were probably missed. So by the time we got into it, the strep was hidden and we were getting episodes from any illness. But I found enough info on this board and Dr. K's website to pursue the possibility of PANDAS twice. Second time, to Dr. L which finally got us on track.

 

I think your work is great. No matter what you decide to send to NIMH, this will be a great form to be pinned at the top for new parents that find the forum!! Thanks for doing this!

[mk8898]

Great work!

 

In regards to the bedtime fears - does this include night terrors? Our son (10) suffered from night terrors starting at the age 6, which was also his first strep infection. In May he was diagnosed with PANDAS after his first major PANDAS episode.

 

Thanks for all of your work.

[thereishope]

Oh, wait, when you say the kids needs antibiotics to erradicate the strep, should it be added that many of the kids have resistent strep and need stronger abx. A high number of parents that first come here say their kids get amoxicillan. It is a fight sometimes to get stronger meds. If it's in writing, it may not be such a fight and recovery may start sooner.

[Buster]

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%.

I too think that anorexia in PANDAS children is > 2% but unfortunately Sokol's work stopped and the 2% number comes from the Swedo study.

 

The reason for citing every statement is so that there's a research report that is backing up the comment. Hopefully there are no unsupported opinions on the page at this time. If you find something with a higher incidence rate for anorexia, I'm happy to update - our own daughter had anorexia nervosa and didn't have the fear of choking but rather the fear of weight gain (in a 7 year old).

 

Thanks,

 

Buster

[Buster]

Great work!

 

In regards to the bedtime fears - does this include night terrors? Our son (10) suffered from night terrors starting at the age 6, which was also his first strep infection. In May he was diagnosed with PANDAS after his first major PANDAS episode.

 

Thanks for all of your work.

Yes, night terrors (other than nightmares) are absolutely in that space.

[Buster]

Oh, wait, when you say the kids needs antibiotics to erradicate the strep, should it be added that many of the kids have resistent strep and need stronger abx. A high number of parents that first come here say their kids get amoxicillan. It is a fight sometimes to get stronger meds. If it's in writing, it may not be such a fight and recovery may start sooner.

I agree and was willing to put that on a FAQ page (i.e., us parents say this) or we have annecdotal evidence of it.

 

Got any paper that we can cite for the claim? I can cite the Kaplan paper on intracellular strep but that's a bit dense for this post.... let me see what else I find.

[Buster]

Let me see if I can weave more of this in.

 

I am trying to accomplish a couple things. One to have a post we can pin which represents a position of what we think the NIMH website should say (so we can refer people to it :-))

 

and two, to actually submit material to the NIMH website to fix stuff they got wrong. I'm of course totally willing for them to take whatever we post here (doubt they'll do so), but at least I can send them the material. On their web site, the most damaging items are the recommendation of SSRIs (despite evidence that this causes higher activation rates) and the reliance on ASO titers despite strong science that this is an unreliable test.

 

Buster

 

i guess that really makes a difference if the intended audience is NIMH to people who are 'in the know' of terms and situations or if it is a piece to have on their website for the layperson who is searching for info. my assumption was you were making a recommendation for their website to educate the layperson. was your intent to educate NIMH?

 

in the early days, i, obviously, didn't find the NIMH info so helpful, but did find Dr. K's website helpful. perhaps this is the difference in the 'dumbing down' for general parents, where i'm most comfortable .

 

i'd like to see a bullet for anxiety, phobia and unfounded fears in and of itself. still - i'm not so sure my son has the 'complicated web' of OCD - he's able to separate from the anxiety and phobia if he's not directly in it. may remain to be seen in the future but currently psych seems to just deal with immediate anxiety reaction and he can get out of it without getting into investigating OCD thoughts. is that supported in your studies or only anxiety related to OCD? i know OCD is an anxiety disorder but just a mention of unexplained anxiety or phobia that doesn't seem to have a correlation to a thought?

 

he presented with ODD - i didn't know what that meant but i guess if i saw it in a list related to pandas, i could figure i should google it based on those 3 words.

 

i wouldn't have known the term 'Tactile/sensory defensiveness'. he had extreme reactions to loud and sudden sounds. dr. k says 'increased sensitivity to light, and/or sound, and/or touch, and/or smells.

[thereishope]

The issue with the symptoms these kids experience is they can fall under many umbrellas and since they are children and children may not admit why they are doing something, you don't know what umbrella it falls under. For ex, my son. He was 5. He stopped eating all together. I had to spoon feed him and even with that, it was lick by lick. Why did that happen? I don't know. I just knew to try my darndest to get that one over with for nourishment purposes and because I read on a website that anorexia was a symptom. Me explaining to him what a feeding tube was didn't even get him to eat.

 

 

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%.

I too think that anorexia in PANDAS children is > 2% but unfortunately Sokol's work stopped and the 2% number comes from the Swedo study.

 

The reason for citing every statement is so that there's a research report that is backing up the comment. Hopefully there are no unsupported opinions on the page at this time. If you find something with a higher incidence rate for anorexia, I'm happy to update - our own daughter had anorexia nervosa and didn't have the fear of choking but rather the fear of weight gain (in a 7 year old).

 

Thanks,

 

Buster

[Buster]

I agree -- and this is very close to what happened for us where we had to essentially force feed -- I can't believe how many calories we tried to get into our child in a single meal.

 

WorriedDad had the same issue (I think) and I think 3-4 other posters on this forum. I was torn about leaving the numbers off (which is what I did first) and then thought that it helped by saying these occur a lot. Even at 2%, I'd probably pay attention ....

 

Let me see what I can find...

 

Buster

 

The issue with the symptoms these kids experience is they can fall under many umbrellas and since they are children and children may not admit why they are doing something, you don't know what umbrella it falls under. For ex, my son. He was 5. He stopped eating all together. I had to spoon feed him and even with that, it was lick by lick. Why did that happen? I don't know. I just knew to try my darndest to get that one over with for nourishment purposes and because I read on a website that anorexia was a symptom. Me explaining to him what a feeding tube was didn't even get him to eat.

[thereishope]

Right now, I don't have anything to back it up. But I did find that anorexia may be a subtype of BDD. BDD is a OCD spectrum disorder. If anorexia is a subtype of BDD it makes sense why anorexia would occur with PANDAS since OCD (along with its spectrum disorders) is common in PANDAS. But that's off topic.

 

So, few things. We could have a draft for NIMH w/ all required citations and a separate parent draft available that doesn't require citations. Also, start threads like "Study information needed" and list what studies we need to back up wanted statements and maybe somene else knows of something.

[thereishope]

.

[EAMom]

Buster...you could just put in "anorexia" without a percentage.

[EAMom]

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!