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Back from Oklahoma and visiting Dr. Cunningham


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re: stress. I think kids can tolerate small to moderate amounts of stress but when it starts to get over the top ....when the child's starts practically hyperventilating, buldging eyes, etc...that's when you need to step away and see if there's anything you can do to clam them down. Yes, this is hard to do when trying to overcome OCD since that anxiety will be present when fighting it, however, in the long run that anxiety will hopefully be overcome and the daily anxiety associated with OCD won't have to constantly be faced. I guess what I am saying is short term high anxiety is better than long term bursts of moderate to high anxiety. That is also why when you are deciding to tackle OCD, choose a time when it is the calmest for your family. Don't decide to tackle a tendency when you are about to go away for a trip or when school is about to start. I made sure I spaced things out and there were times I'd go a couple weeks before approaching another ritual or compulsion just because it wasn't the right time, I knew I was strong enough yet, etc. Perhaps give your child Ibuprofen while you are starting to tackle the OCD and this will help as well.

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I am not sure that she meant that ALL stressful events open the BBB.

 

I sure hope I am interpreting it all correctly. :huh:

You have done a great job all this info is awesome!

it may make some or all of us scratch our heads but that is

what we ALL do about pandas anyway.

Great job to all of us to wake up eveyday to just deal with the day to come.

Tracie.

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I've read all of these posts so excuse me for going a bit off topic from the current conversation here, but can someone please just explain chronic P.A.N.D.A.S.? What it is? It was seriously only a couple weeks ago that I had heard of it & in all honesty I cried like a baby when I did. From what I can gather the brain just, gets used to it? I've noticed that I get worse when I have strep since diagnosis about three years ago (although as I've said before it's almost impossible to tell WHEN I HAVE FREAKING STREP), but even then I noticed that when the strep went away there was no clean slate like I had read about. It got a little better, but it definitely didn't go away & everything was still really bad. I've been told that every untreated assault can cause brain damage, is this true too? & are PET scans the ones that show this? We're mainly looking at the Basal Ganglia here, but has anyone seen damage in the Globus Pallidus or the Thalamus regions nearby?

 

Any information would be greatly appreciated. Most of you on the forum know my story but I feel the need to reiterate just in case someone doesn't; we suspect that I've been untreated for thirteen years & counting.

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Emerson, to my knowledge there isn't proof that PANDAS causes permanent brain damage. As for chronic PANDAS, I think that term carries different meanings.

 

First one..

 

One defintion of being chronic, if you referring it to #4 on the list in this thread is when, like you said, the brain has been retrained during a PANDAS exacerbation(s) and the OCD that used to come and go is now part of them. The brain incorrectly learns and thinks those types of thoughts are the correct ones, when they are not. Now, the hard part is trying to figure out what is still PANDAS and what is residual as a result of a past PANDAS exacerbation. I don't have an answer on how one would know that. This is why parents need to try everything they can for their child. If the PANDAS reaction is still in effect, I just don't see how one can fully retrain the brain to think correctly again during that time. Perhaps you can learn coping mechanism, but I would think it's hard to retrain the brain when it is still being assaulted. The PANDAS reaction needs to be under control and passed. Infections need to be gone, antibodies need to be lowered, etc.

 

Then there is this is a definition of chronic PANDAS Dr T once gave

"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.5,6,125129 Antibasal 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

syndromeobsessive-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."- Dr. Rosario Trifiletti

 

In your case, if you have gone 13 years without any treatment and you currently do not even know if you may have an active, hidden infection...you are still in the catagory of fighting PANDAS itself. Don't feel that all is lost. Has your Mom or step Dad made you an appt yet?

Edited by Vickie
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Emerson: My ds14 is in the same boat you are with it never fully going away, though in younger years he was something like 95% after eradicating strep. Since puberty, he is more in your boat, even with treatments, though the treatments thus far have made the lows much much better that when he is/was untreated. And that's the thing. Treatment may never eradicate it, but it might make it more managable, so he can live his life. He did have a PET scan in March, and it did show inflammation of the Thalamus (and BG). Where are you with that doctors appointment? Why the neurologist instead of the pediatrician if you had strep? Are the physical symptoms gone now?

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PMom Quote: "I am thinking of collecting donations. I already have $200 donated, sent to me, but, set aside for her. I don't know if you guys would trust me enough to send donations to me, and, over a 6 month period or so, I would collect them, put them in a special PANDAS fund in the bank, and then present her with the additional funding in one lump check. I believe lump sums are bettter than donations rolling in haphazardly. There are 1200 plus members of the fan page....if we all donated what we could...no set amount...we could raise a subatantial amount of money. They need it...they need help and more funds. I don't want to see this research fizzle out because of lack of funding. What do you all say???

Oh, I will be posting pictures on the Pepsi Refresh Project PANDAS page.(END QUOTE.)"

 

 

 

Hi PMom--just an fyi--

It is my understanding that Dr Cunningham already has a place for donations and they go directly to her--Perhaps we need to clarify with Dr Cunningham?

OU Pandas Foundation, P.O. Box 26901, Library - 162, Oklahoma City, OK 7312

Edited by T.Mom
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Also, I know some discussion has been made in regard to impetigo and PANDAS. Some have said impetigo can't cause a PANDAS flair because it does not raise ASO. Well, I am going to be bold and say that particular belief is definitely false. She showed me a slide of the "faces" of strep.....strep throat, impetigo, cellulitis, etc. I piped in and said my PANDAS child had a definite flair with impetigo last year....she smiled and said "of course."

 

My son's initial onset was caused by an impetigo infection!!

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Kelly - thanks again for all you have done! Please let us know when it will be on. I've been receiving requests from all my friends who voted. I cannot believe how many people I run into that say "Oh - I did that pepsi voting like you asked... so glad you got it!".

 

That's funny, I get alot of that too. Actually, my husband owes his entire fraternity mailing list a "drunken, Jack Daniels infused online 'rant'" for their unwavering support during the cause. (Apparently he promised them some outlandish things to garner their support!)

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Emerson: My ds14 is in the same boat you are with it never fully going away, though in younger years he was something like 95% after eradicating strep. Since puberty, he is more in your boat, even with treatments, though the treatments thus far have made the lows much much better that when he is/was untreated. And that's the thing. Treatment may never eradicate it, but it might make it more managable, so he can live his life. He did have a PET scan in March, and it did show inflammation of the Thalamus (and BG). Where are you with that doctors appointment? Why the neurologist instead of the pediatrician if you had strep? Are the physical symptoms gone now?

 

As of this morning I have an appointment for August 18th! With a man named Dr. Goebel. He's not a neurologist, he's a "pediatric specialist" who deals with P.A.N.D.A.S. specifically. I have really high hopes for this. I found him on the forum list but I don't know of anyone who's had experience with him.. Like I said though. High hopes nonetheless. :)

Physical symptoms are not entirely gone. I'm not sure if the choking fears count as physical, but those are still going strong. The more I think about it the more that I think those had to be a product of my latest strep infection, because it just makes no sense that I would get them this randomly. I really wish my Mom would have taken me to the pediatrician then because I have no idea how long (or even IF, really, although I'm almost positive since my entire house got sick the day after I started feeling off)I was infected. The only physical symptoms that are really persisting are a few minor motor & vocal tics (mostly "chirping", as my friends call it. Thank GOD for these manageable tics <3).

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Okay, thought of something else. She told me that what is basically happening in PANDAS (which we basically already know) is that illness/infection is opening the blood brain barrier and allowing the offending antibodies to do their dirty work. She also stated that stress can open the blood brain barrier allowing the same thing to happen. That is why our kids flair when under stress, are nervous or excited.....opens blood brain barrier.

 

That TOTALLY explain why my son has tics during testing, or any activity that puts him on the spot.

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RE: #10 on P. Mom's list of info from Dr. C......haloperidol being researched as an effective treatment. Really? I just HATE to see that drug mentioned. It used to be the drug of choice for TS but from what I've read/heard from people, the side effects were just NOT worth it. The possibility of TD is just too high for my liking. But then again, if they are researching that drug further, maybe something good will come out of it.

Great information, P. Mom.

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