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chronic PANDAS kids


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Faith, any immunological tests done? Immune deficiency issues? Just curious.

 

 

Have not had these tests done. I may tho, as I am curious as well. Don't know if it matters, but my son does not get sick alot at all tho, I think you said yours doesn't either? we just get a 24 hour virus once a year. don't know if that means he doesn't have immune issues, but he seems healthy. except for his weight, very light, a little underweight. I would be surprised if we found any immune deficiencies, but I don't really understand all that yet, so I may just do it as a rule out......

 

melanie, (post #10, not 3).....

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Faith, any immunological tests done? Immune deficiency issues? Just curious.

 

 

Have not had these tests done. I may tho, as I am curious as well. Don't know if it matters, but my son does not get sick alot at all tho, I think you said yours doesn't either? we just get a 24 hour virus once a year. don't know if that means he doesn't have immune issues, but he seems healthy. except for his weight, very light, a little underweight. I would be surprised if we found any immune deficiencies, but I don't really understand all that yet, so I may just do it as a rule out......

 

Yes, ds9 is similar to yours but his immune system is poor. Below normal IGE, low normal on IGM and IGA. I think it's important information, I think instead of our kids getting colds and viruses that are "normal", instead the brain is attacked by them. All the bad stuff crosses the bbb somehow. So you build up the immune system, this happens less often. My two cents. :)

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I still wonder if it's really a distinction or if we just haven't yet found the right treatments for the "chronic" folks. I was "chronic" (anorexia, bad tics, mood disorders) from about age 13 to age 17 or 18, at which point I was found to have tuberculosis and was treated very aggressively with antibiotics that I had never had before (2 years worth, but I was better PANDAS-wise toward the beginning of that). After that period, I was never chronic again, and I never had been before that period either. My kids have only been episodic so far.

 

 

Folks,

As the parent of a chronic PANDAS sufferer, vs a sudden onset sufferer, how much success have you all had with treatment? I don't know why I suspect the chronic sufferers are tougher nuts to crack.

 

Please weigh in with thoughts on this. Thanks in advance, Buster, if you respond to this.

 

Michael

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p.s. During that "chronic" time in my life during my teens, I spent almost 2 years in psychiatric hospitals (5 times, a few months each). Recall that this was the 80's so "PANDAS" wasn't even recognized as more than a one-off thing, and no-one knew anything about treating such one-off cases. I have to say that I am incredibly grateful for that time in my life - that my parents took that very difficult leap to keep me safe until something was figured out by hook or by crook. Not only did that haven buy time for me, but in that setting one spends an enormous amount of time learning strategies to cope. Without having had that, who knows how I would have navigated the up and downs of the years that followed. Those hospitalizations were probably the most important things that have ever happened to me.

 

 

 

Folks,

As the parent of a chronic PANDAS sufferer, vs a sudden onset sufferer, how much success have you all had with treatment? I don't know why I suspect the chronic sufferers are tougher nuts to crack.

 

Please weigh in with thoughts on this. Thanks in advance, Buster, if you respond to this.

 

Michael

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I still wonder if it's really a distinction or if we just haven't yet found the right treatments for the "chronic" folks. I was "chronic" (anorexia, bad tics, mood disorders) from about age 13 to age 17 or 18, at which point I was found to have tuberculosis and was treated very aggressively with antibiotics that I had never had before (2 years worth, but I was better PANDAS-wise toward the beginning of that). After that period, I was never chronic again, and I never had been before that period either. My kids have only been episodic so far.

 

 

Folks,

As the parent of a chronic PANDAS sufferer, vs a sudden onset sufferer, how much success have you all had with treatment? I don't know why I suspect the chronic sufferers are tougher nuts to crack.

 

Please weigh in with thoughts on this. Thanks in advance, Buster, if you respond to this.

 

Michael

 

 

sorry to hijack for a minute, but Momto2Pandas,

are you sying you had issues until you were treated for TB, and then things started getting better?

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I still wonder if it's really a distinction or if we just haven't yet found the right treatments for the "chronic" folks. I was "chronic" (anorexia, bad tics, mood disorders) from about age 13 to age 17 or 18, at which point I was found to have tuberculosis and was treated very aggressively with antibiotics that I had never had before (2 years worth, but I was better PANDAS-wise toward the beginning of that). After that period, I was never chronic again, and I never had been before that period either. My kids have only been episodic so far.

 

 

Folks,

As the parent of a chronic PANDAS sufferer, vs a sudden onset sufferer, how much success have you all had with treatment? I don't know why I suspect the chronic sufferers are tougher nuts to crack.

 

Please weigh in with thoughts on this. Thanks in advance, Buster, if you respond to this.

 

Michael

 

 

sorry to hijack for a minute, but Momto2Pandas,

are you sying you had issues until you were treated for TB, and then things started getting better?

 

Yes. We didn't identify the connection immediately, but the anorexia nervosa and tics literally disappeared suddenly at some point during that course of treatment. (I don't remember the exact timing, but I have it all somewhere...). Isoniazid and rifampicin. The mood stuff didn't go away 100% until my thyroid issues were discovered and corrected a bit later, after the TB treatment was over, but they were MUCH MUCH better - I was fully functional at college, etc, after having had to drop out of high school multiple times.

 

Incidentally, I didn't even know that I had TB at the time. I reacted positively to a skin test and then upon follow-up (chest x-ray, etc.) had positive findings for TB. I have no idea how long it had been in there. I had just figured my resp symptoms were allergies, bronchitis, etc., which I suffered from a lot, and of course anorexia nervosa seemed to explain the underweight part.

 

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Folks,

As the parent of a chronic PANDAS sufferer, vs a sudden onset sufferer, how much success have you all had with treatment? I don't know why I suspect the chronic sufferers are tougher nuts to crack.

 

Please weigh in with thoughts on this. Thanks in advance, Buster, if you respond to this.

 

Michael

 

I would have to say we are chronic. Onset at age 7 - not overnight, but within a few weeks. Onset was not severe, either - which is what made us totally miss this thing for so many years. She would have episodes of OCD that would last a few months and then completely go away - we attributed it to a "phase". Each episode of OCD would come back with a different obsession, but just a little more intense each time. I would say we really "blew up" at age 8. She went through a period of tics at age 9- which went away with abx treatment. Right now, she has anorexia as her main issue (no throwing up yet - but an intense -very intense- fear of becoming fat). Her mood has improved on abx, as has her handwriting. She still has urinary control issues and OCD related compulsions. She has only 2 documented strep infections (but I didn't take her in every time she ran a fever, etc, either). The 1st was 3 or so weeks before the 1st minor OCD phase and the 2nd was in July of this year when she developed tics.

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Folks,

As the parent of a chronic PANDAS sufferer, vs a sudden onset sufferer, how much success have you all had with treatment? I don't know why I suspect the chronic sufferers are tougher nuts to crack.

 

Please weigh in with thoughts on this. Thanks in advance, Buster, if you respond to this.

 

Michael

Michael - I gave a big "sigh" when I read the words, "chronic pandas sufferer." I totally belive they are tougher nuts to crack, my dd being one of them. She's had it for seven years undiagnosed until this spring and we have since done ivig with dr k, monthly ivig with dr b, high abx and 2 steroid bursts. I have to sit back and say, "She is a lot better. But she is not healed." There are still strong patterns of inappropriate behavior that are deeply ingrained in the brain and very hard to navigate out of. It's frustrating and there are days I feel as though there MUST be something else I can do or should be doing that I haven't figured out yet because this is a heck of a long ride. Some days I am like superwoman and we are cracking the code, and other days I feel my legs wobble and woe and I say this muck will never end. When I see something bizarro she has not done in 5 months I say, "why" is this back for a few days?? Or for instance, her teacher called me just a few minutes ago and told me that my dd came into her classroom on Monday after Christmas break and laid down on the floor. WHAT??!! She NEVER did anything like that before! And in music class while all the others were singing and doing the hand motions, she sat there and did nothing. Then when all were done with the song, she starts to sing at the top of her lungs! But her handwriting and verbal skills are so much improved and her focus is much sharper. What do I do with that??

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Hi to all!

 

Our 11 yo son is a chronic/incorrectly dxed case that was a figured out a 1 1/2 y ago after a stint in psych ward. We are three months post IVIG and quite discouraged. We saw some very encouraging improvements starting about post IVIG 3 weeks, only to a steady downward spiral starting in Dec. It has been a very rough day again and I feel like throwing in the towel. Dr. K has agreed prescribe 875mg Augmentin until conversion. A month ago we discovred that our 15 yo daughter had titers of 752/5700!! With the behavioral/stomach symptoms Dr. K wanted to see her. He is pretty sure she has the adol variant of PANDAS. She is on 875 mg Augmentin for a month. I'm not holding my breathe that that will completely take care of it. She is so much better. I believe someone someone else in the family is running around with strep despite the negative throat cultures. I have had considerable problems with my psoriasis, which can be irritated by GABHS. I haven't been able to get my doc or Dr. K signed on to checking titers for the rest of us that were negative. I wonder about our 13 yo whose behavior can be much younger and her spacey, lack of focus-stay on track traits. I did email Dr. K begging for titer checks. I agree with all the comments about these kids being tough cases to crack. It's been a long haul I thought was looking like it was going to be over and I am not sure where we are going now as my son tries to break down another door & terrorize his sisters. Gotta go. Dawn

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Buster posted, see his reference to Trif and Pavone study.

 

 

where is the post?

Number three post within this topic

 

Here's the paper reference:

[Pavone2006] Pavone P, Parano E, Rizzo R, Trifiletti RR (2006). "Autoimmune neuropsychiatric disorders associated with streptococcal infection: Sydenham chorea, PANDAS, and PANDAS variants". J Child Neurol 21 (9): 727-36. http://jcn.sagepub.com/cgi/content/abstract/21/9/727

 

 

"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."

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COCO,

I can sympathize with your situation, it sounds just like mine. Just when I think things are doing a little better the phone will ring and the school will be on the other end telling me something that Harley has done that was totally inappropriate for his age. Sometimes I just want to ignore the call and not answer because I know its gonna be something crazy that I can't really do anything about anyway. And I feel like the school wants me to explain to them, his reasoning behind why he does the crazy stuff he does. Makes me want to jump up and down and scream.

 

 

Folks,

As the parent of a chronic PANDAS sufferer, vs a sudden onset sufferer, how much success have you all had with treatment? I don't know why I suspect the chronic sufferers are tougher nuts to crack.

 

Please weigh in with thoughts on this. Thanks in advance, Buster, if you respond to this.

 

Michael

Michael - I gave a big "sigh" when I read the words, "chronic pandas sufferer." I totally belive they are tougher nuts to crack, my dd being one of them. She's had it for seven years undiagnosed until this spring and we have since done ivig with dr k, monthly ivig with dr b, high abx and 2 steroid bursts. I have to sit back and say, "She is a lot better. But she is not healed." There are still strong patterns of inappropriate behavior that are deeply ingrained in the brain and very hard to navigate out of. It's frustrating and there are days I feel as though there MUST be something else I can do or should be doing that I haven't figured out yet because this is a heck of a long ride. Some days I am like superwoman and we are cracking the code, and other days I feel my legs wobble and woe and I say this muck will never end. When I see something bizarro she has not done in 5 months I say, "why" is this back for a few days?? Or for instance, her teacher called me just a few minutes ago and told me that my dd came into her classroom on Monday after Christmas break and laid down on the floor. WHAT??!! She NEVER did anything like that before! And in music class while all the others were singing and doing the hand motions, she sat there and did nothing. Then when all were done with the song, she starts to sing at the top of her lungs! But her handwriting and verbal skills are so much improved and her focus is much sharper. What do I do with that??

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Folks,

As the parent of a chronic PANDAS sufferer, vs a sudden onset sufferer, how much success have you all had with treatment? I don't know why I suspect the chronic sufferers are tougher nuts to crack.

 

Please weigh in with thoughts on this. Thanks in advance, Buster, if you respond to this.

 

Michael

 

After reading the quote posted by Buster, we may be considered chronic as my girls got this condition when they were so young that we didn't see the sudden onset. If they had been older maybe we would have, and they have gone through many different variations of symptoms and they did wax and wane. The treatment that is working for us is getting on a high enough dose of zithromax. We have not yet gone through IVIG or PEX. I imagine we will stay on this dose until further notice at this point.

 

Susan

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