NIMH Press Release

[butterflymom]

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Edited October 5, 2015 by tampicc

[fightingmom]

Thanks for posting this link!

[peglem]

So, are the study participants receiving Cunningham tests?

[mama2alex]

The word "tics" appears zero times in this press release, while "OCD" appears 10 times. And burying it in "sensory and motor abnormalities" doesn't count, especially when immediately followed by the requirement that "Symptoms are unexplainable by a known neurologic or medical disorder" ("Tourettes" anyone?). Of course, no mention of Lyme. Its both fascinating and disgusting to observe the politics in action.

[Iowadawn]

So, are the study participants receiving Cunningham tests?

 

From what I have heard or read, yes. Before & after.

[bigmighty]

So, are the study participants receiving Cunningham tests?

 

From what I have heard or read, yes. Before & after.

 

Yes - Before and after is correct. When we got to the point where they were requesting 17 vials for labs, we asked for more detail as to what they were doing with them all.

[T_Mom]

This press release from NIH is GREAT.

 

THANK YOU DR. SWEDO AND TEAM!

 

They are equipping parents to get the treatments necessary for PANS/PANDAS !!!

 

This release represents a paradigm shift which treating pediatricians will need to come-up-to-speed on.

Edited March 22, 2012 by T.Mom

[tpotter]

This press release from NIH is GREAT.

 

THANK YOU DR. SWEDO AND TEAM!

 

They are equipping parents to get the treatments necessary for PANS/PANDAS !!!

 

This release represents a paradigm shift which treating pediatricians will need to come-up-to-speed on.

 

 

My initial thought was that it was great...BUT, as previously noted, they do not mention tics, and also keep mentioning that it is "sudden onset." As so many of us know, sudden is sometimes hard to determine (my DS19 is the perfect example, as we didn't realize it until he was 15, but have proof dating back to at least the 1st grade.) When doctors see children like that, they will decide that the kids couldn't possibly have PANS. One new mom on the forum has already PM'd me that she's no longer certain her child has it, because of this statement. I suggested that she keep testing, because without tests, we can't know for sure.

 

This is a huge problem, and no matter how the NIMH tries to justify their language, it is still going to hurt an awful lot of kids (including the ones with tics.) The NIMH has come so much further this year than many of us could have dreamed of, so why are they still avoiding certain terms and conditions. There's going to be no way out of it, and it just doesn't make sense. What particularly disturbs me, is that Dr. Leckman, who heads the Tourettes clinic at Yale is co-author of the white paper, and yet tics are notably left out, as they are in the current paper.

 

Do they really not understand that leaving out any and all data/symptoms that is relevant, and completely spelled out for the doctors, so they don't have to read into anything, is absolutely critical? Otherwise, too many children are going to continue suffering for life!

[LNN]

I'm going to play devil's advocate for a moment - keep in mind my DS was a huge ticcer, with only sub-clinical OCD most of the time. So I have complete understanding of those in the tic camp. But...it's been almost 20 years since Pandas was proposed. In those 20 years, the major obstacle has come from the TS researchers. For 20 years, this politically and ego-motivated stonewalling has hurt every single kid who has/had/will have Pandas. Let's say that's 100 kids a year, or 2,000 kids in the past 20 yrs. (I know it's probably 10x more but let's keep the math simple).

 

Maybe 20% of those kids had belligerent parents who fought and clawed and got treatment, sometimes years after onset because it took us that long to find doctors across the country when local docs turned us away. So 400 kids got treated, 1600 didn't.

 

Let's say this new proposal widens the net to include non-strep triggers - like viruses, lyme, mycoplasma, all the things we regularly talk about. So maybe 500 kids a year get captured in the new net. And let's say since the naysayers don't have their territory on the line, that they back away. So 500 x 20 years = 10,000 kids get helped, vs. 400.

 

Yes, those kids with tics still have to pray they have belligerent parents able to travel. But right now, we rely on a half dozen doctors in the country. If a new definition allows us to have doctors in every state, with more research money spent on answers instead of pi**ing matches, and Pandas becomes accepted, two things happen...First, many more kids get help. Second, once the disease is accepted, better researched, with more widespread clinical evidence that kids respond to abx...then you can expand the definition to include tics (because many diagnosed kids are going to have tics in addition to their other symptoms).

 

I'm not saying tic kids are less important or should be sacrificed for the greater good. But we're all getting nowhere together under the current parameters. Better to get some kids treated and break down closed minds, open avenues of treatment and research, and let them pave the way for the ticcers, rather than insist that tics be included and prevent everyone from moving forward.

 

Same argument I think applies to sudden onset. A large number of kids do have sudden onset. There has to be something that sets this label apart from traditional OCD. Maybe you miss the sudden onset, but I think between the number of people who can recall the day it happened plus the people who can look back and say "well, in hindsight, things changed when he got sick in first grade" - you capture a large percentage of people with the disease.

 

I don't mean to offend or hurt anyone who falls outside the new parameters. But from a practical perspective, I'd rather see a lot of kids be able to move forward than be held back for another decade arguing about tics, even as a mom of a ticcer.

[PowPow]

Thanks for the insight, LLM.

I think you are correct.

This is a big ship to turn around. I think it is starting to lean in the right direction & I am excited!

[fightingmom]

I wish they would focus more on common behaviors, meltdowns, rages, etc.

[Fixit]

I read this article as soon as it was posted.

I thought, I must be reading this wrong. I thought, I will come back and look at it later and someone will point out that I am missing something. And/or, let someone else post what I think I am NOT reading

I AM SO MAD. WHY ARE THEY FORFETTING MY CHILDREN!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Is this Sophies Choice??????????????????????

 

Sorry LLM and no disrespect to you or all that you do for the children and the parents on this board…… I disagree…I think if we stand together, and dont back off with what we KNOW, pans can look like and waited 6 more months to put the proper white paper out, all the possibilities would be included, then fine tune the treatment plan from there. The fact is the experts are still learning. Now my family has officially slipped in the proverbial crack. It will be harder for even pandas doc to justify treating my children.

And some here may feel better, since you are a mom of a ticcer, that you have the grace to see this path. I do not currently have that grace. My child, unlike yours, is not in remission. So I think you are currently in a better position to make your statement.

It will now be another 10-20yrs, if its that short, that the ticcers come into the diagnosis. Now the &*&^% TS community has just added fuel the fire of how right they are and now we have to try to knock down even bigger egos. I think( I am not sure) that the problem with tics, is if they are the main symptom, is that they may not respond to treatment as well once it becomes chronic or autoimmune and it may take longer to heal. Thats why, even though it thought I was doing well with treating ds12 the minute I saw something and was able to get abx the 15 times of overnight onset( sorry to repeat myself, but I need to be heard)..I think that is just too many times. I now keep a supply of abx here; until I can get to a dr, if something breaks out on Friday night….and dosing ds9 with Advil has really just helped his current abx program.

 

Again, I am not mad at you. I dont think I can be mad at any of the parents here. You have brought up a point of view that I think a few might be thinking…well at least we got some kids acknowledged. I just wanted to freely post for the other parents who want to say…well I am not okay with it.

 

 

I hope you are right, and swedo or whoever, put out an addendum to the white paper and I just waisted all this energy for nothing. But the reality is that I think your hopeful analysis is wrong. I think shame on the drs who backed off of information we already have and know, and shame on the DRS and their egos for putting their pride in front of the health of people. And lets face it, just because someone has a PhD or DR in front of their name, doesnt make them smarter than a lot of the parents here, or a thinker and able to analyze conditions. In most cases, it means they can regurgitate information better than the next guy or gal!!!!

 

 

Just to clarify my position..DS 12 did not have other symptoms with earlier onsets.

There was some hyperactivity, ..I think it might have to do with red dye in the abxs.

We are dye free now

He had a couple outbursts or oppositional behavior with a couple episodes. But again I can attribute that to, if you dont feel good, i.e. strep, you might be cranky.

Occasional dysgraphia with some onsets...again, not all (and I think I thought he was just being lazy and cranky, not realising he couldnt do it right…it would take a long time do some writing homework)

Since the onset 3yrs ago, he has had other secondary symptoms come and go, over a period of months.

( examples: feeling of bugs crawling under scalp with trichotelanima, bed wetting, oppositional, hyper activity, neck pain not related to tics, eyes balls shaking/vibrating, self stimulating, blah , blah)

I think you would have to be a detective to notice or correlate these..and I still question how much I can include these as they are not chronic.

His perpetual secondary issues with this onset tend to be dysgraphia (as well as he says he cant draw anymore and he used to be a good artist), sleep issues and dilated pupils.

But tic tic tic tic tic tic tic tic tic like a fiend.

 

I apologize to any I might offend and sorry for the long windedness

 

 

OH..ps..and sorry, because this is not going to be a popular thought...

 

Cunningham test….as I appreciate that she is at least willing to do something, find some correlation, but…and this is just my opinion…..

It is only showing that an infection is going on…thats it.

And if it is to be used…the number dont correlate to whos pandas, ocd, ts whatever…

So if you are above normal…ie 86 for instance, then you have an infection/inflamation, and should not be serperated in to ocd/pans/ts..it seems illogical even when i read the information before the 1st draw....

And I think if you are presenting with ANY of the pansSOT symptoms and are above normal,then you have pans and are fighting something....that would be a better reading of the test.

This is from my personal observations

DS first draw was 106…he was still in episode but better than he had been.

He had JUST come off of taurine which has been noted to possibly decrease camk…..

So ……of course ds could have well just fallen into the "ts" category…..what ever....

But as a tiger/panda mom, why was it not in normal range???...... not in range is not in range....

He second draw about 3 months later and he was flaring pretty good was above 160…well into "pandas" range

That means he is just fighting more infection or has more inflamation ( just my 2 cents)

Edited March 22, 2012 by Fixit

[Bill]

Thanks for the post!

 

I agree with and respect everyone's opinion but lean with LLM on this one. Doctors who are helping us now are out there on their own. There are many doctors who won't touch PANDAS because of the controversy. If this allows more doctors to feel comfortable treating even a subset of our kids - that's great as it allows the leading edge to stretch farther and treat even harder cases. More doctors perhaps recognizing and treating earlier should also reduce the number of severe cases. Wouldn't it be wonderful if doctors were diagnosing our kids.

 

I noted they also talked of a registry. "There is also broad agreement on the need for a “centralized registry” that will enable the research community to analyze evidence from studies that will eventually pinpoint causes and treatments. Such a registry is currently under development by members of the International Obsessive Compulsive Foundation (IOCDF)."

 

That's awesome as it will (might) put the broader symptoms and experiences out there for the researchers and medical community to see. It's going to be really hard for them to not keep pressing forward with the evidence that comes forward. Heck, they could start here.

 

IMHO, my 2 cents, ...

[Iowadawn]

Leaning in more of the direction of Bill & LLM. I doubt there is a disease out there with diagnostic criteria that fits all cases. We gotta start somewhere. Like the saying goes: when is the best time to plant an oak tree? Answer: 40 years ago. When is the second best time? Today. MHO. Dawn

[Fixit]

trust me...

I WANT To Lean with LLM TOO!!!!

I WANT TO BE SO WRONG...and all of you can make fun of me and say .."nani nani nooh nooh" and call me a stupid head

 

but you can't come back in 40years, then i would be right...

 

i don't want to give you any time, because thats time i have to travel and fight for treatment for my boys...but if there is a change in philosophy in 2 years...i would love to get inundated with knuckle head messages

 

I will pray that i am wrong tonight

Edited March 22, 2012 by Fixit