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Will damage from PANDAS be permenant/ Do we shield from Strep?


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Can anyone help me with some questions about PANDAS? After a recent strep throat infection, my daughter began to show signs of OCD. Excessive handwashing, won't touch doorknobs, clothes that were worn the day before, or lightswitches, worry about dying, worry worry worry all day everyday about everything! After some of my own research, I diagnosed her with PANDAS! I called my pediatrician for a consultation and he wouldn't meet with my husband and I, saying that was "out of his league" He referred us to a psychologist. The psychologist agreed that our daughter has PANDAS. We asked the psychologist the following questions and he said that those were medical questions that we should ask our pediatrician about!!

 

Here are my questions:

 

Will her brain ever fully recover from the damage it suffered when the strep infection occured?

 

Do we need to send a note home to parents at school letting them know that a child in the class has PANDAS and encouraging them to keep their children at home if they complain with a sore throat and also to report to the teacher if their child has been diagnosed with strep throat?

 

If she gets strep throat again, will it add to the damage, making her symptoms worse each time she gets strep?

 

We know this is a pediatric disorder, so when will she "outgrow" this disorder so we can stop worrying about her getting strep again?

 

What are the natural vitamins/suppliments recommended for children with PANDA'S?

 

Any other information is really appreciated. Thank you so much

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  • 1 month later...

Determined-

I agree. More PANDAS on the TS board. I've seen one ER doc, then a pediatrician and a ped neurologist twice and even though my son started a tic or it could be OCD thing with throat clearing/hyperventilating or touching his face, arms, legs, etc. These things dont look like tics (from what I've seen from the internet, but I'm no MD) because he will either touch or cough - whatever part of his body's not in use. When he gets nervous, he just sticks the tips of his fingers in his nose or puts them in his mouth. Anyway - all we can get from every doctor is "Let's wait and see if these tics continue for a year. That's the only way to diagnose TS. Dont worry, most of the time these things just go away. Want some drugs for now?" I had to ask for a second Antistrep O test to check for trends and an Anti-DNaseB test to see if it is PANDAS. Maybe most docs dont think PANDAS is real? Dont know how the psychologist would know it was PANDAS without doing blood tests.

 

Wish I had some PANDAS info for you like -will it go away without damage. I havent been able to find out either, but here's a link that might help.

 

http://intramural.nimh.nih.gov/pdn/web.htm

 

2bit

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  • 2 weeks later...

I had a real hard time with our dr. at 1st, we kept getting our messages confused. We finally met with him in person and he was very receptive and knowledgeable about PANDAS. If you don't think your Dr. would be, is it possible for you to find a new pediatrician who is more receptive to you and your daughter that could give her the proper blood tests to determine that she has PANDAS?

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Hi - my daughter is 6, and is on second round of PANDAS. We are finding it gets easier, as she can understand and "own" more of the treatment. While the Behavioral/Cognative therapy is hard at first, it really works. We've been able to handle without meds thus far. Here is a great website that we have found helpful. http://brief-treatment.oxfordjournals.org/...amp;keytype=ref (copy this to your browser line). After an episode is over, her brain is fully recovered - she goes back to being her normal happy self, with no undue worries. Still hard to go through, but the therapy techniques really do give a level of control. We don't "stress" about Strep - as most of the time, she catches it right before the major symptoms erupt. Sometimes, we don't know who she got it from, as some kids are carriers, but have no symptoms.

 

Can anyone help me with some questions about PANDAS? After a recent strep throat infection, my daughter began to show signs of OCD. Excessive handwashing, won't touch doorknobs, clothes that were worn the day before, or lightswitches, worry about dying, worry worry worry all day everyday about everything! After some of my own research, I diagnosed her with PANDAS! I called my pediatrician for a consultation and he wouldn't meet with my husband and I, saying that was "out of his league" He referred us to a psychologist. The psychologist agreed that our daughter has PANDAS. We asked the psychologist the following questions and he said that those were medical questions that we should ask our pediatrician about!!

 

Here are my questions:

 

Will her brain ever fully recover from the damage it suffered when the strep infection occured?

 

Do we need to send a note home to parents at school letting them know that a child in the class has PANDAS and encouraging them to keep their children at home if they complain with a sore throat and also to report to the teacher if their child has been diagnosed with strep throat?

 

If she gets strep throat again, will it add to the damage, making her symptoms worse each time she gets strep?

 

We know this is a pediatric disorder, so when will she "outgrow" this disorder so we can stop worrying about her getting strep again?

 

What are the natural vitamins/suppliments recommended for children with PANDA'S?

 

Any other information is really appreciated. Thank you so much

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Hello

 

Meg's Mom, how long are you finding an episode lasts?

 

Our 4 year old daughter has just come through her first episode of PANDAS - she went from very bad OCD + lots of other behaviors to virtually symptom free for 2 weeks after 14 days amoxi. It then ramped up again recently and has sort of sawtoothed through the last 10 days. We have no culturable strep at the moment and can't decide if this is still recovery from episode 1 or episode 2 or what?

 

Our mood has gone from rock bottom to elated to constant low level fear of what's next. Trying to get a hold on prognosis is so hard.

 

Thanks, Danuta

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  • 6 months later...

Danuta,

 

We too had the same experience as you for our 7.5 year old. After very bad sudden onset OCD (Anorexia Nervosa, ritual movements, questioning rituals, ...) for 4 months (Feb-June), her symptoms resolved with dramatic improvement after 2 weeks on azithromycin. She was then symptom free for 3 months (thank goodness) with a minor flare up in October. We took her asymptomatic sister in who cultured positive for strep. Once we got her sister treated (used Azith on sister), symptoms resolved once more and we're back at baseline. It might be worthwhile to move the conversation to PANDAS forum.

 

We too are in the "what's next" phase wondering what to do and yet grateful for these periods of calm after a terrible storm.

 

Buster

 

 

Hello

 

Meg's Mom, how long are you finding an episode lasts?

 

Our 4 year old daughter has just come through her first episode of PANDAS - she went from very bad OCD + lots of other behaviors to virtually symptom free for 2 weeks after 14 days amoxi. It then ramped up again recently and has sort of sawtoothed through the last 10 days. We have no culturable strep at the moment and can't decide if this is still recovery from episode 1 or episode 2 or what?

 

Our mood has gone from rock bottom to elated to constant low level fear of what's next. Trying to get a hold on prognosis is so hard.

 

Thanks, Danuta

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Hello

 

Just a quick update.... we are in our 2nd bad episode at the moment. This time, though, it appeared to start with a virus but who knows? Also this time the onset was still sudden but the worsening was over a longer period and the coming out of it also seems to be taking much longer this time. We also got urinary frequency this time around (we didn't the first time).

 

Our experience with 2 major and 1 minor episode is that each time the symptoms are different. We are having a lot of licking OCD stuff and preoccupation with swearing and worrying over saying the s**t word. We are also having even worse "naughtiness cascading into ragey type tantrums" this time.. which I'll be honest I am finding truly wearying. Nothing I do seems to be able to halt it, it feels as though she is having a lot of trouble with impulse control.

 

Titers yet again came back low and I am starting to doubt my previous unshakeable belief that it's PANDAS. We are exploring other routes (toxins came back ok, deficient in selenium and some B vitamins, very low sIgA, low chymotrysin - dig. enzyme marker, very high inflammatories in gut and quite a bit of candida) and are treating for those things too.

 

As yet we haven't gone the psych evaluation route but are considering it but trouble is it feels as though the eval. would change with each episode.. sure we get OCD each time but the other behavioural manifestations are so varied and many each time. I dunno.. a simple ped. OCD with co-morbid diagnosis would feel like a blessing at the moment.

 

Don't mean to be negative but just about had my fill of it at the moment, like so many of you feel I'm sure. You just don't feel as if you can get a real hold of it...

 

thanks

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Hello

 

Just a quick update.... we are in our 2nd bad episode at the moment. This time, though, it appeared to start with a virus but who knows? Also this time the onset was still sudden but the worsening was over a longer period and the coming out of it also seems to be taking much longer this time. We also got urinary frequency this time around (we didn't the first time).

 

Our experience with 2 major and 1 minor episode is that each time the symptoms are different. We are having a lot of licking OCD stuff and preoccupation with swearing and worrying over saying the s**t word. We are also having even worse "naughtiness cascading into ragey type tantrums" this time.. which I'll be honest I am finding truly wearying. Nothing I do seems to be able to halt it, it feels as though she is having a lot of trouble with impulse control.

 

Titers yet again came back low and I am starting to doubt my previous unshakeable belief that it's PANDAS. We are exploring other routes (toxins came back ok, deficient in selenium and some B vitamins, very low sIgA, low chymotrysin - dig. enzyme marker, very high inflammatories in gut and quite a bit of candida) and are treating for those things too.

 

As yet we haven't gone the psych evaluation route but are considering it but trouble is it feels as though the eval. would change with each episode.. sure we get OCD each time but the other behavioural manifestations are so varied and many each time. I dunno.. a simple ped. OCD with co-morbid diagnosis would feel like a blessing at the moment.

 

Don't mean to be negative but just about had my fill of it at the moment, like so many of you feel I'm sure. You just don't feel as if you can get a real hold of it...

 

thanks

 

Wow, your dd sounds just like my dd not too long ago. We had a very bad episode that lasted a LONG time and basically made life unbearable for everyone for a while. I started to question PANDAS too because of low titers but later found out she had a mycoplasma infection that was just festering I guess and I believe that was responsible partly. She also got a very high Streptozyme IgM level from Neuroscience (along with the pandas panel--a lot of others were high too but that was BIG) and still had low titers. I don't know why. Anyway, I know exactly what you meant when you said 'a simple ped OCD with co-morbid diagnosis would feel like a blessing at this time'. Sometimes you can get to a point so low that it doesn't matter in what form....these kids need HELP! And so you start looking at any avenue that you can get it. I caution you against the antipsychotics but understand things can become desperate to get these kids some relief.

 

My dd is 4 weeks post IVIg and is doing really great. She is back to about 90% of her pre PANDAS self. It is completely AMAZING to me because we are finally able to see our child again after living through something I never dreamed people had to deal with since basically August 2007. Have you tried a steriod burst? It could also help confirm the diagnosis of PANDAs for your dd. I'm sure you already know that but I thought i'd bring it up. IMO, now's the time to try it while she's having such symptoms and also while NOT on any antipsychotics. good luck to you and don't forget to take care of YOU!!!

regards,

amy s

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thanks for that reply :-) I'm just needing to vent and getting an understanding reply reallly does help. No worries on the drug side, I'm not ready for that route yet, that would absolutely be the last resort but the steroid burst is kinda tempting, I guess I keep hoping that we're just about to turn the corner and it will all tail off like it did last time.. we'll see. Thanks again though, it does help knowing other people have the same troubles and understand :-)

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Amy,

 

Reading your posts. Did you have Neuroscience do the Pandas panel, and one more question, did you child have tics and are they gone after IVIG. Ok, one more, did you use Dr. K?

 

Linda

 

 

One of the doctors that we took my dd to in sent the test off to Neuroscience along with a BUNCH of others tests that were sent out. As far as tics....I don't really think she had tics. But I was never clear on what a tic was. If she had one, I think it was a complicated one which was a hand lick touch thing and yes gone now. But we were also told that it was part of her OCD. She had severe disabling intrusive thought OCD, tremors sometimes to include her head and upper body and severe and frequent violent rages...urinary difficulties, and night time issues and just plain bizarre changes in personality and behavior...some PICA episodes, etc. Some symptoms changed as we went along and she had basically one remission that lasted for 2 months but other than that it was just one long huge pandas issue since August 2007. We did a telephone consult with Dr. K along with exchange of emails. We used his protocol for the steroid burst and his exact IVIg protocol- he sent it to my pediatrician.

regards,

amy s

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Hello

 

Just a quick update.... we are in our 2nd bad episode at the moment. This time, though, it appeared to start with a virus but who knows? Also this time the onset was still sudden but the worsening was over a longer period and the coming out of it also seems to be taking much longer this time. We also got urinary frequency this time around (we didn't the first time).

 

Our experience with 2 major and 1 minor episode is that each time the symptoms are different. We are having a lot of licking OCD stuff and preoccupation with swearing and worrying over saying the s**t word. We are also having even worse "naughtiness cascading into ragey type tantrums" this time.. which I'll be honest I am finding truly wearying. Nothing I do seems to be able to halt it, it feels as though she is having a lot of trouble with impulse control.

 

Titers yet again came back low and I am starting to doubt my previous unshakeable belief that it's PANDAS. We are exploring other routes (toxins came back ok, deficient in selenium and some B vitamins, very low sIgA, low chymotrysin - dig. enzyme marker, very high inflammatories in gut and quite a bit of candida) and are treating for those things too.

 

As yet we haven't gone the psych evaluation route but are considering it but trouble is it feels as though the eval. would change with each episode.. sure we get OCD each time but the other behavioural manifestations are so varied and many each time. I dunno.. a simple ped. OCD with co-morbid diagnosis would feel like a blessing at the moment.

 

Don't mean to be negative but just about had my fill of it at the moment, like so many of you feel I'm sure. You just don't feel as if you can get a real hold of it...

 

thanks

 

 

I certainly know what you mean - it seems like there are so many factors to consider. My daughter had a pandas panel which showed that she had a lot of antibodies reacting to strep as the antigen, She also had elevated ASO but not horribly high. Yet, she seemed to react more to viruses. She's been on 2 different type s of abx (augmentin and zithro) and have had no change of behavior with either. IVIG brought her back to normal for 2 weeks, but then she went back to her panda like behavior which has been going on for 4 months now (2nd episode) - just a continuous living in a fog with occasional outbursts of OCD or anger, worrying, etc. We just had an OATS test done (still need to talk to doc about what it all means and how to treat), but from what I can tell so far, it says she has overgrowth of yeast. Sure she has been on abx for 2 months, but I also give her tons of probiotics and GFS extract drops daily. What more can you do? Now you have to wonder if her symptoms are reallly her PANDAS symptoms or if they're the yeast symptoms. A number of other results within this test panel were abnormal, so I will re-post after I get some clarification. The test recommends various supplements, but I'm beginning to feel like I'm running a drug store for all my daughter's supplements - she takes more pills than a geriatric patient, and yet I cook very healthy meals and don't give her any junk food, so you would think that her nutritional status should be pristine. Pat

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