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PANDAS syndrome
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ange




 
 
    
 

Post Sun, Jul 25 2010, 9:16 pm
Does anyone have experience with Pandas syndrome in kids? I am wondering if my son might have it; he has elevated blood antibody levels, behavior issues.

Thanks
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amother


 

Post Sun, Jul 25 2010, 9:36 pm
I have a lot of experience with pandas. bh now my daughter is fine but it was a long journey! what would you like to know.
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amother


 

Post Sun, Jul 25 2010, 11:41 pm
(not OP) my son *likely* has/had it. basically he got full blown OCD and they did a blood test and saw he had the elevated antibodies. shortly after that he came down with strep anyway so he was treated with antibiotics. the OCD did not improve. he still has the OCD. its been several months. we are seeing a therapist. she is trying to help him but he is young and doesn't see the problem of (tapping his ears 3X in public for example if "his brain" tells him to)

as far as I know they can try antibiotics it sometimes helps. (didn't for my son, but we didn't try long term antibiotics) really there is nothign to do other than treat the symptoms of OCD. other than that you also wnat to make sure to take your child to the dr any tiem you suspect they are sick so you don't miss another strep episode. thats the advise I got. I would also be interested in hearing others stories and info you can share.
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amother


 

Post Sun, Jul 25 2010, 11:46 pm
(again not OP) to first poster, u say your daughter is now fine, I woudl like to know the journey of how she was cured.

btw my son that now has OCD had some slight OCD tendencies befroe, but not full blown like now.
they say someone who gets pandas was likely predespositioned to it and the strep brought it out. so it seems it might have came out anyway.
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amother


 

Post Mon, Jul 26 2010, 12:24 am
amother wrote:
(not OP) my son *likely* has/had it. basically he got full blown OCD and they did a blood test and saw he had the elevated antibodies. shortly after that he came down with strep anyway so he was treated with antibiotics. the OCD did not improve. he still has the OCD. its been several months. we are seeing a therapist. she is trying to help him but he is young and doesn't see the problem of (tapping his ears 3X in public for example if "his brain" tells him to)

as far as I know they can try antibiotics it sometimes helps. (didn't for my son, but we didn't try long term antibiotics) really there is nothign to do other than treat the symptoms of OCD. other than that you also wnat to make sure to take your child to the dr any tiem you suspect they are sick so you don't miss another strep episode. thats the advise I got. I would also be interested in hearing others stories and info you can share.
Dr Susan Shulman has lots of experience with Pandas. She has found that only one type of antibiotics works for Pandas and most doctors are prescribing something else. Try to get a hold of her book where she talks about this and says which antibiotics work. (I'm sorry I do not have the book but read it at a friend's house.) Hatzlacha.
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ange




 
 
    
 

Post Mon, Jul 26 2010, 2:11 pm
Thanks for the replies. I have heard of Dr. Schulman and may condier consulting with her if my own ped doesn't know what to do (which I have a feeling of).

My son has always been active, high maintenance...but in the last year we have had several episodes of uncontrollable rages, violent temper tantrums, destructive actions, etc. These times come and go...may last a week of high intensity (an outburst every other day), or he may be his regular challenging self for a while and them boom - he starts to go crazy again. This usually only happens with his parent,s not at school. As for the tics, he has had a persistent cough that lasted a few months, and another annoying habit that also seems to have gone away (I guess it was a tic but almost appears to be something he would do just to annoy). But in terms of classic Pandas symptoms, I see that OCD symptoms are required and I do not notice that in him.

It is mostly the terrible moods, rages...Also, it's hard to remember what he was like before it got extreme, because he is generally a malcontent kid nowadays, even when not in a rage. Always complaining about things not being fair, etc.

Anyway, his blood test came back with mildly elevated strep antibody levels, which may be an indicator of Pandas. His throat culture cam back negative though. And I cannot recall him having had strep in the past year, or more recently when things flared up again.

So I am confused what the anitbody elevation can mean, but the absence of clear pandas symptoms like ocd or being able to pinpoint the triggers.

Thanks for any info you can help me with.
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amother


 

Post Mon, Jul 26 2010, 2:22 pm
ange wrote:
Thanks for the replies. I have heard of Dr. Schulman and may condier consulting with her if my own ped doesn't know what to do (which I have a feeling of).

A consult with her is $250. First try to get a hold of the book to see which antibiotics she recommends. Then have your ped prescribe it. Start a thread asking someone to type her except on PANDAS or at least which antibiotics she prescribes. If you can wait until Thursday then I can try to ask my friend for you.
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amother


 

Post Mon, Jul 26 2010, 2:31 pm
Here is an excerpt on PANDAS from Dr. Schulman's book.
http://rbsmedical.com/?p=21#high_1
She writes that using Zythromax can result in a quicker and more dramatic return to normal behavior.
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amother


 

Post Mon, Jul 26 2010, 7:39 pm
My daughter was one of the first PANDAS cases Dr. Schulman treated and we all learned together. My daughter also did not preent with OCD behaviors, but rather, like your son she was prone to aggressive behaviors. When she would be acting out we would test her for strep & if her cultures were negative then her blood tests always indicated a recent strep. Treatng her with long-term zithromax was helpful. By the way, Dr. Schulman was our regular pediatrician (lucky us) and was so supportive!
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ange




 
 
    
 

Post Tue, Jul 27 2010, 10:07 am
Thanks for all the info.

How did Dr. Schulman diagnose her as Pandas without having the classic symptoms? Did she rely on bloods, ?

My son had an above range ABO AB level of 285 (lab gave 150 as the upper limit of in range), but it seems my doc did not order the DNase test which I am seeing is commonly mentioned. My son has not had a positive throat culture in a year and a half, although my other kids have had frequent streo infections. Just retested him after the bloods came back and the throat culture is negative (after 48 hours). My doctor said his slightly elevated blood level doesn't necessarily mean anything, which I find highly suspect...

I just don't know how to pursue this - spend thousands of dollars at the pysch office treating the behavioral issues, or at the neuro, immono and other medical offices for a medical reason?

Does this sound like a possible case of Pandas from your (obviously non-medical) experience? Should I switch my pcp to Schulman (to avoid repeat consult fees, etc?) Or should I go to a Pandas specialist (heard of Trifiletti?) who charges $400 an hour - no ins. accepted.

This is all so frustrating.

Thanks for your insights.
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amother


 

Post Tue, Jul 27 2010, 10:50 am
my son is the one who ended up with full blown OCD. he still has it. he was prescribed zythromax but one course of meds did not work? if it didn't work that first time could a second round or long term round of meds work?

we are currently goign to a psychologist...not really getting anywhere.

here is a question though, for those ppl whose children had OCD symptoms, did it bother the child that they were doing it? we are doign the cognitive behavior therapy to try to get rid of the OCD and it seems as though he doesn't really care that he has to -tap things a few times for example- he doesn't have the drive to stop. is that normal? the psych said this may be more from a PDD then if he doesn't want to stop. help.
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amother


 

Post Tue, Jul 27 2010, 10:51 am
have a few free minutes so I will try to give you some info.
I am the amother who said her daughter is BH fine.
First of all, when you see your child like this, you think it will never end but know that it will.
It took 2 years of trying medical and natural to be able to say my daughter is fine.
She had a lot of different twitches and habits that kept on changing. one would go away and the next one would come! it was sooooo frustrating! She also was always in tears for every little thing (she is 10 years old now.)
Okay, so like some amothers already mentioned. I was Bh a patient of Dr. Schullman so she diagnosed it right away. She put her on Zithromax (it was the only med to help). but after 4 months of being on zithromax and seeing that any time she missed a pill she was nuts I decided to try other ways with dr. schullmans support since she said there really is not a cure the zithromax controls the symptoms until the body rids itself of the antibodies which can take years (depending on age because they say that the latest it goes away is by puberty) but you need to give it so your child can be a functioning individual socially and academically.
so my next try was a chiropractor. he treated her as well as put her on acidopholis and echinacia. again I saw results but when either the teatement or the vitamins were stopped it came back. so after a while, I got fed up.
Next I decided to try a homeopath. She put her on some basic vitamins, homeopathic sprays and took her off some foods. It took some time and I saw major improvement even when she missed a dose or cheated on her diet. Repeat bloodwork also showed major improvement. She is now basically off the diet (just doesnt overdue it with those foods but eats normal) she doesnt take the sprays or vitamins and Bh she is fine!(it is now a year and a half since we started with the homeopath and she kept it for about a year.)
Just a few extra pointers. There were times when she had a "flare up" as I called it and acted nutty and I would call up dr schullman and she told me that these pandas kids when they are exposed to strep even if they dont have it will have a reaction, it is their body fighting the strep from attacking their body. I noticed that when another child had strep she would react so dont worry, it does not mean the treatement is not working.
another thing, the child Hates it and does not feel comfortable in their own skin. My daughter is Bh a very expressive and verbal child and she would tell me I feel horrible and cranky and dont know why! She was very upset to go off certain foods and did not want at first but I promised her a reward if she kept it for a month. Bh by the time the month was up she was willing to continue because she said she felt so much better and calmer!
If I can be of any help, I would be glad to .
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amother


 

Post Tue, Jul 27 2010, 10:54 am
yes, it might take a while for the zithromax to help if his levels are too high.
Dr schullman did not recommend going for ocd help because she said it will frustrate the child because she cannot help it and that the problem is not coming from ocd but from the strep titers.
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pina colada




 
 
    
 

Post Tue, Jul 27 2010, 11:04 am
amother above,
which homeopath treated your daughter?
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amother


 

Post Tue, Jul 27 2010, 11:04 am
amother wrote:
yes, it might take a while for the zithromax to help if his levels are too high.
Dr schullman did not recommend going for ocd help because she said it will frustrate the child because she cannot help it and that the problem is not coming from ocd but from the strep titers.


how do you test for pandas?
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amother


 

Post Tue, Jul 27 2010, 11:34 am
dnase blood test for strep titers (antibodies)
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ange




 
 
    
 

Post Tue, Jul 27 2010, 11:48 am
Wow - thanks for all this info. I have been reading forums on this and it is so scary.

Sorry for all the Q's - I'm just trying to wrap my mind around all this and see if it is a plausible explanation for my son.

If you don't mind my asking:

1. What type of diet/restrictions?
2. How would you select a chiro or holistic person (I have a chiro I've used before for back pain; would he be able to help if I described the symptoms, etc.)

3. Do you think a doc (like Schulman) could make a diagnosis for pandas if the ocd is not there, no strep in cultures, but moderately elevated blood levels.

Thanks again.
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amother


 

Post Tue, Jul 27 2010, 1:49 pm
the diet/restrictions is on individual basis. she tests each child separately. my daughter is off milk, chocolate, citrus fruit and no using mr. clean or windex. it sounds harder than it is but there are so many alternatives and once you get used to it it is okay and it worked even if she cheated by any party, etc.
I went to the people I did based on recommendation from people.
There is not always only ocd symptoms, it can also be behavioral and moodiness, etc.
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ange




 
 
    
 

Post Tue, Jul 27 2010, 2:00 pm
Thanks. The thought of cooking in a special way is so daunting (of course worth it if it helps Smile); it's hard enough to find time to cook regular as it is Smile

If you are in the NY area, could you give me some recommendations of who you used?

Also, thank you for the chizuk that "this too shall pass". My life feels like a roller coaster and sometimes I wonder if I am the one with the psych issues! Is this something, though that Dr. S feels will completely resolve itself, or will these pandas kids deal with controlling this illness their whole lives?

Thanks again for all your support!!!!
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amother


 

Post Tue, Jul 27 2010, 2:56 pm
you dont really have to cook a special way. I just always have fish when not making fleishig supper. I try not to make too many milchig suppers. omitting orange juice/lemon aid is okay, there is so much more to drink. and as far as chocolate. I just make sure to have other nosh in the house and have learned to use carob powder instead of cocoa for brownie cakes, icing etc.
I use basic h from shaklee instead of mr. clean anyways because it bothers my daughter with exzema.
I use windex just not the blue one because that contains amonia but I can use the white, yellow or red.
Dr. schullman does believe that it will eventually go away but the reason to not just ignore it is because tics or behavior can become habit forming that even if the pandas goes away they can still stay with the tics.
chiropracter: Raphael Harbator
Neuropath: Chaya Tilla Brachfeld
and dont feel bad. ask all you want. Been there done that and I know the frustration and anxiety you are going through. I remember at one point being so obsessed with it that I could not focus on anything else!!
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