What the NIMH webpage should be...

[EAMom]

I never really thought my child had OCD until I talked to Dr. L and she explained to me what it looked like in a small child. I was looking for the hand washing, checking doors, counting, etc...

 

I'm curious, what did Dr. L. say about what OCD looks like in a small child?

[kim]

I wonder if there is a way to sneak in something about Chronic PANDAS....reading the summary, you get the impression (which is, unfortunately consistent with most of the literature out there) that PANDAS is always dramatic and acute in onset and then (relatively quickly) goes completely away with a course of antibiotics...either "on" or "off" and the child is completely normal between episodes.

 

I hope i'm commenting on the right thread.

 

Thanks for that thought EAmom. I've been struggling with the question, if it's even worth mentioning that the description, would still have made me walk away from really investigatiing the PANDAS aspect as I did all of those years ago. We just lived on amox. here. The Ped even asked me if the tics came on with the strep, but we always had strep. When I questioned "yet more amox." I was told that it was just like water on fire, where strep was concerned. Always wondered why 3 rounds were required if that were so. Youngest was finally pronounced a carrier and only treated if he had active symptoms.

 

If parents focus on abrupt onset and remission, I think there will be more kids that fall through the autoimmune cracks, whether it's strep or viral at that point.

[Buster]

See if the bullet items help. My belief is that an astute parent will bypass the diagnosis part and go to the symptom part -- i.e., then go get a diagnosis :-)

 

i see what you're saying but do find that unfortunate. is that the way any disease or disorder is defined or is it for research study purposes?

[Buster]

See if modification to main page addresses your comment. On your last item, I'm hoping to make this a stick thread for this forum so we essentially publish our own page too....

 

Buster

 

 

I'm nit picking here, so bear with me...

 

 

1.I know PANADS/OCD is mentioned in paragraph form, but I think it should be in the itemized list as well. Perhaps w/ a very brief generalization of what OCD may be.

 

Presence of OCD (rituals, intrusive thoughts, unreasonable fears).

 

The stuff in the () could be altered. I'm just too tired to think clearly right now. I just view the itemized list as very important because that is what a parent will automatically go to if they visit the site.

 

2.I think in the treatment paragraph, the wording of proph antibiotics needs to be in its own sentence. Thta makes more of an impact. There is just so much importance in docs realizing it's okay to give long term proph antibiotics.

 

3. Realistically, you can include this website for doc referals, but they will never put that up.

 

You did a great job! Where do find the time?

[thereishope]

I'm happy with it. Once the final draft is ready to go, do you think it would be a good idea to print it out and send it to local docs? One can mail to them and say that PANDAS advocates are petitioning the NIMH to update their information. Provided is a copy of the recommended changes. This would be a way to bring PANDAS up to them and provide them with current info without sounding like we are preaching to them. We can then also provide them with PANDAS experts contact info. We can even provide more studies that may be of importance and make a whole "media packet" of sorts out of it.

 

See if modification to main page addresses your comment. On your last item, I'm hoping to make this a stick thread for this forum so we essentially publish our own page too....

 

Buster

 

 

I'm nit picking here, so bear with me...

 

 

1.I know PANADS/OCD is mentioned in paragraph form, but I think it should be in the itemized list as well. Perhaps w/ a very brief generalization of what OCD may be.

 

Presence of OCD (rituals, intrusive thoughts, unreasonable fears).

 

The stuff in the () could be altered. I'm just too tired to think clearly right now. I just view the itemized list as very important because that is what a parent will automatically go to if they visit the site.

 

2.I think in the treatment paragraph, the wording of proph antibiotics needs to be in its own sentence. Thta makes more of an impact. There is just so much importance in docs realizing it's okay to give long term proph antibiotics.

 

3. Realistically, you can include this website for doc referals, but they will never put that up.

 

You did a great job! Where do find the time?

[Buster]

Hi Kim and EAMom,

 

Obviously I too am very sensitive to this and want to get this "chronic" across -- I do think there is confusion between the work by researchers to have a very narrow band to study (the "definite A" and "definite B" and "definite C" style -- where they have to have rising ASO and have a throat culture and have rapid onset and have a response within 4 weeks of exposure and ... -- whereas the reality is likely a spectrum.

 

I can always add to the material "annecdotally we see this" or "many parents report that" or ... but I haven't yet found a good paper (or at least don't recall a good paper) that I can reference indicating this less "obvious" form....

 

Perhaps mentioning work on the raised anti-neuronal antibodies and then stating that these occur in children with more chronic conditions would work.

 

Suggestions for rewording?

 

I know I'm turning this into a group editing exercise -- but I think the point being discussed is critical to get out there. The scientist in me wants to just cite peer reviewed articles, the realist/parent in me knows that "you observe in the field and explain in the lab"

 

Buster

 

I wonder if there is a way to sneak in something about Chronic PANDAS....reading the summary, you get the impression (which is, unfortunately consistent with most of the literature out there) that PANDAS is always dramatic and acute in onset and then (relatively quickly) goes completely away with a course of antibiotics...either "on" or "off" and the child is completely normal between episodes.

 

I hope i'm commenting on the right thread.

 

Thanks for that thought EAmom. I've been struggling with the question, if it's even worth mentioning that the description, would still have made me walk away from really investigatiing the PANDAS aspect as I did all of those years ago. We just lived on amox. here. The Ped even asked me if the tics came on with the strep, but we always had strep. When I questioned "yet more amox." I was told that it was just like water on fire, where strep was concerned. Always wondered why 3 rounds were required if that were so. Youngest was finally pronounced a carrier and only treated if he had active symptoms.

 

If parents focus on abrupt onset and remission, I think there will be more kids that fall through the autoimmune cracks, whether it's strep or viral at that point.

[sww817]

EAMom- Dr. L told me that in a small child they cannot necessarily express that they are worried. So as in the case of my four year old (who is an "alphabet kid"), they come across as anxious or fidgety and then might throw something across the room. THAT description fit my child exactly. I personally get these small tidbits of information from Dr. L that amaze me. I have put more pieces of my son's puzzle together since my first meeting with her than I had in two years with multiple other doctors. Makes me so mad at myself for not finding her sooner!

[EAMom]

from the Trifiletti paper:

 

Chronic PANDAS

Rather than the characteristic explosive onset typical of

PANDAS, in which parents can often point to the day and even

hour when symptoms began, many patients with tics and/or

obsessive-compulsive disorder have a much more gradual onset

and chronic course, with waxing and waning of symptoms over

the course of days to weeks. D8/17 antibodies have been

demonstrated in patients with PANDAS16,17 and patients with

chronic tic disorders.5,6,125–129 Anti–basal ganglia antibodies had

also been demonstrated in patients with tic disorders and/or

obsessive-compulsive disorder, well before the PANDAS concept

was proposed, and strongly confirmed in a recent large study.130

Could some patients with less explosive onset of Tourette

syndrome/obsessive-compulsive disorder have a more persistent

streptococcal infection? We recently found evidence of a

streptococcal carrier state in 72% of patients with Tourette

syndrome–obsessive-compulsive disorder surveyed over a 3-year

period (Trifiletti, manuscript in preparation), some 3- to 10-fold

higher than the general population. We propose that this group

be called ‘‘chronic PANDAS.’’ Chronic PANDAS might prove to

be much more common than classic PANDAS.

[Worried_Dad]

Hi, Buster:

 

I'd say our son - like Sammy Maloney - pretty much fell into the "chronic PANDAS" category. A while back, I remember coming across this article abstract (co-authored by some Italian researchers... but also by Dr. Trifiletti!):

 

Autoimmune Neuropsychiatric Disorders Associated With Streptococcal Infection: Sydenham Chorea, PANDAS, and PANDAS Variants

 

Here's the part that caught my eye originally.

 

In addition to strictly defined PANDAS, we and others have recognized several PANDAS variants, including adult-onset variant, a dystonic variant, a myoclonic variant, and a "chronic'' PANDAS variant.

 

Does that help?

 

P.S.: Maybe Dr. T, as a co-author, can get you access to the full text?

 

 

Hi Kim and EAMom,

 

Obviously I too am very sensitive to this and want to get this "chronic" across -- I do think there is confusion between the work by researchers to have a very narrow band to study (the "definite A" and "definite B" and "definite C" style -- where they have to have rising ASO and have a throat culture and have rapid onset and have a response within 4 weeks of exposure and ... -- whereas the reality is likely a spectrum.

 

I can always add to the material "annecdotally we see this" or "many parents report that" or ... but I haven't yet found a good paper (or at least don't recall a good paper) that I can reference indicating this less "obvious" form....

 

Perhaps mentioning work on the raised anti-neuronal antibodies and then stating that these occur in children with more chronic conditions would work.

 

Suggestions for rewording?

 

I know I'm turning this into a group editing exercise -- but I think the point being discussed is critical to get out there. The scientist in me wants to just cite peer reviewed articles, the realist/parent in me knows that "you observe in the field and explain in the lab"

 

Buster

 

I wonder if there is a way to sneak in something about Chronic PANDAS....reading the summary, you get the impression (which is, unfortunately consistent with most of the literature out there) that PANDAS is always dramatic and acute in onset and then (relatively quickly) goes completely away with a course of antibiotics...either "on" or "off" and the child is completely normal between episodes.

 

I hope i'm commenting on the right thread.

 

Thanks for that thought EAmom. I've been struggling with the question, if it's even worth mentioning that the description, would still have made me walk away from really investigatiing the PANDAS aspect as I did all of those years ago. We just lived on amox. here. The Ped even asked me if the tics came on with the strep, but we always had strep. When I questioned "yet more amox." I was told that it was just like water on fire, where strep was concerned. Always wondered why 3 rounds were required if that were so. Youngest was finally pronounced a carrier and only treated if he had active symptoms.

 

If parents focus on abrupt onset and remission, I think there will be more kids that fall through the autoimmune cracks, whether it's strep or viral at that point.

[Buster]

I have the paper. I'll cite it.

 

Buster

 

Autoimmune Neuropsychiatric Disorders Associated With Streptococcal Infection: Sydenham Chorea, PANDAS, and PANDAS Variants

 

Here's the part that caught my eye originally.

 

In addition to strictly defined PANDAS, we and others have recognized several PANDAS variants, including adult-onset variant, a dystonic variant, a myoclonic variant, and a "chronic'' PANDAS variant.

[peglem]

EAMom- Dr. L told me that in a small child they cannot necessarily express that they are worried. So as in the case of my four year old (who is an "alphabet kid"), they come across as anxious or fidgety and then might throw something across the room. THAT description fit my child exactly. I personally get these small tidbits of information from Dr. L that amaze me. I have put more pieces of my son's puzzle together since my first meeting with her than I had in two years with multiple other doctors. Makes me so mad at myself for not finding her sooner!

My very autistic daughter ( I think PANDAS is the cause of that by the way) cannot express herself even at age 15- makes people really hesitant to give her a diagnosis, other than autism. Autism seems to have this special vocabulary for OCD and tics that makes it harder to see. "Stims", need for sameness and routine, repetitive behaviors, and my favorite (@ her banging her head and biting her hands bloody) "she needs the input"

 

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!!

[Megs_Mom]

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.

[Buster]

I'll continue modifying the base of this thread (i.e., edit the post) until it incorporates the feedback or until I can't figure out how to keep it both short and accurate :-)

 

Eventually, I'll pull this out to a new thread and try again. I really appreciate all the suggestions and revisions. Nothing like peer-parent review :-)

 

By the way, please continue to edit/recommend -- the thing about being a research scientist is that I'm used to having my papers picked on so don't mind in the least.

 

Buster

[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?

[Buster]

Hi, I'll pull this out to another thread soon.

 

While it's still in this form, would you have recognized your child from this description. I'm thinking that while my original goal was to send something to NIMH, I'm now realizing that something for parents might be equally (more) helpful.

 

I loved the section about "How to recognize OCD in children" -- really great thread....

 

How about a FAQ?