NEW to PANDAS Please Help!

[jacobsmom]

I am extremely desperate for some advice. My 9 year old son had tics and all of the classic symptoms and disorders associated with Tourettes which started about a year ago. His strep titers have been elevated ever since upon my insistence we test him for high strep antibodies but we can not find a doctor in Colorado who recognizes PANDAS as a valid diagnosis or anyone who knows how to treat PANDAS. I do not know where to start. His ped did agree to a two week treatment of antibiotics but it did not lower his strep titers at all. His throat culters are negative and he won't put him on any more antibiotics. I see that there are other parents out there with a child with PANDAS and I am so glad to see I am not alone.

 

How do I know that his Tourettes is PANDAS? Just by the high antibody titers? Is there another diagnostic test I can be requesting? Are there any treatments for PANDAS? And most importantly...

 

Who should I take him to see? We have been to two neurologists who do not treat or test for PANDAS, his pediatrician who has never seen a PANDAS case, a psychologist, we will be starting cognitive behavioral therapy this month, and have an apt to see an environmental physician next month. Maybe we should get all of our families throats cultured? He has not had a positive throat culture. The infection that he had around the time of the tics was in his finger. Any information or suggestions would be extremely helpful. Thank you so much.

 

Amy

[Chemar]

Hi and welcome

 

usually the clearest indicator of PANDAS induced tics is when a sudden onset occurs in conjunction with high strep antibody titres. The only effective treatment for PANDAS is prophylactic (longterm) treatment with the CORRECT antibiotic (not all antibiotics are effective)

 

Here is a copy of a recent post from Ronna

Based on the newest research for the NIMH (I think I posted this article last June) we started Kurt on 500 mg azithromycin once a week based on him having kind of an unsettled spring...for along time we treated him as necessary with Keflex and for a few years this worked well but over time he responded less favorably to it.

 

I showed the NIMH article to my doctor and she agreed we should go back to prophylactic antibiotics and I was pleasantly surprised to find that she was much more informed and supportive of a PANDAS dx that ever before in the past 5 years when it felt like she did alot of things to kind of "humor" me...anyways, she seemed to be much more on board now.

 

THE RESULTS: (knock on wood)...Kurt has had his best summer in fve years...no kidding! He has had really minimal tics (only a few days of minor tics during a viral illness we all got a few weeks ago), and most importantly to me his behavior has been really stable and predictable and very age appropriate. Interestingly at one point this summer I missed the dose one week and I really did notice a big difference in terms of his behavior (weepiness etc)...once I realized we had missed it and gave it to him he improved noticeably within two days.

 

The absolute best, best part of using the azithromycin is that it is once a week and therefore easy to do the probiotics, vitamins etc...though I have been a little lax on this...I'm going to work on this now that we are back from the lake...what a big difference from giving the antibiotics every day! He has not had any side effects that I can see.

 

I hope your son continues to do well...I will find the article from the NIMH and post it again on this thread for anyone who has not read it and are interested.

 

A link to the article I mentioned. Ronna

 

http://intramural.nimh.nih.gov/pdn/pub-9.pdf

 

Snider, Lisa A; Lougee, Lorraine; Slattery, Marcia; Grant, Paul; Swedo, Susan

Antibiotic Prophylaxis with Azithromycin or Penicillin for Childhood-Onset Neurospychiatric Disorders Biol Psychiatry 2005; 57: 788-792

 

 

 

hopefully someone from Colorado will see this and be able to give you personal input.

 

I also just found this on Google, and so you may want to check this out

 

University of Colorado, School of Medicine. Barbara Geller, MD

it is a link to a journal article related to PANDAS

[jacobsmom]

Ronna,

Thank you for your quick response! I am going to keep trying to find a physician who is willing to treat him with prophylactic antibiotics. The link that you posted for the article from University of Colorado didn't work. Would you please send it to me again. Thank you so much!!!

Amy

 

 

 

 

Hi and welcome

 

usually the clearest indicator of PANDAS induced tics is when a sudden onset occurs in conjunction with high strep antibody titres. The only effective treatment for PANDAS is prophylactic (longterm) treatment with the CORRECT antibiotic (not all antibiotics are effective)

 

Here is a copy of a recent post from Ronna

Based on the newest research for the NIMH (I think I posted this article last June) we started Kurt on 500 mg azithromycin once a week based on him having kind of an unsettled spring...for along time we treated him as necessary with Keflex and for a few years this worked well but over time he responded less favorably to it.

 

I showed the NIMH article to my doctor and she agreed we should go back to prophylactic antibiotics and I was pleasantly surprised to find that she was much more informed and supportive of a PANDAS dx that ever before in the past 5 years when it felt like she did alot of things to kind of "humor" me...anyways, she seemed to be much more on board now.

 

THE RESULTS: (knock on wood)...Kurt has had his best summer in fve years...no kidding! He has had really minimal tics (only a few days of minor tics during a viral illness we all got a few weeks ago), and most importantly to me his behavior has been really stable and predictable and very age appropriate. Interestingly at one point this summer I missed the dose one week and I really did notice a big difference in terms of his behavior (weepiness etc)...once I realized we had missed it and gave it to him he improved noticeably within two days.

 

The absolute best, best part of using the azithromycin is that it is once a week and therefore easy to do the probiotics, vitamins etc...though I have been a little lax on this...I'm going to work on this now that we are back from the lake...what a big difference from giving the antibiotics every day! He has not had any side effects that I can see.

 

I hope your son continues to do well...I will find the article from the NIMH and post it again on this thread for anyone who has not read it and are interested.

 

A link to the article I mentioned. Ronna

 

http://intramural.nimh.nih.gov/pdn/pub-9.pdf

 

Snider, Lisa A; Lougee, Lorraine; Slattery, Marcia; Grant, Paul; Swedo, Susan

Antibiotic Prophylaxis with Azithromycin or Penicillin for Childhood-Onset Neurospychiatric Disorders Biol Psychiatry 2005; 57: 788-792

 

 

 

hopefully someone from Colorado will see this and be able to give you personal input.

 

I also just found this on Google, and so you may want to check this out

 

University of Colorado, School of Medicine. Barbara Geller, MD

it is a link to a journal article related to PANDAS

[Chemar]

Hi Amy

that was me, Cheri, posting not Ronna

 

I was quoting a post by Ronna, who is our expert mom on PANDAS! Sorry if I confused you

 

the University of Colorado article is only accessible via paid subscription....I simply posted it so that you could get the name of the doctor Barbara Geller, MD

perhaps you can contact the University of Colorado school of medicine and try to get information from Dr Geller as to whether she sees patients or if she can recommend another physician who does

 

(this is the full link to the article

psychiatry.jwatch.org/issue_pdf/JP0403.PDF )

[Ronnas]

Did you notice any difference while he was on the antibiotics for 2 weeks...what was the antibiotic?

Ronna

[jacobsmom]

Did you notice any difference while he was on the antibiotics for 2 weeks...what was the antibiotic?

Ronna

 

I did notice improvement in his emotional outbursts and tics during antibiotic treatment. I can not remember the name of the antibiotic but it was every 12 hours and it was liquid.

[Pandamom]

Hi Amy,

Welcome to this discussion. I just discovered this forum myself last weekend and have felt such overwhelming relief that there are people who know and will discuss PANDAS. My daughter is 12 and she had her first onset in February. Since then we've had a roller coaster ride. I've kept a log of her symptoms and treatements and found that during times of antibiotic treatment for sinus infections (which have been chronic) her other symptoms improve dramatically. We use cognitive behavior therapy for her anxiety and panic disorder and she has been very successful with that.

 

I am now in the process of trying to talk her psychiatrist or pediatrician into trying the prophylaxis dose of antibiotic. They are at least willing to research the data and discuss the possibility with me. I have been calling all over the country trying to find a doctor who understands this condition and will give some guidance. I called the NIMH (where they did the prolonged study of antibiotics and Panda kids) and they gave me the name of a doctor here in Florida. Perhaps they know someone in Colorado as well. The number is 301-435-6650.

 

Good luck. I know its frustrating. I can't tell you how many people have looked at me funny when trying to describe what is wrong with my child. We actually changed pediatricians five months after my daughter first had symptoms at the suggestion of our psychologist. The doctor we use is involved in nuerotransmitter research and has a very holistic approach. Maybe you could find a ped with that type of background. We are blessed with doctors who have open minds and hopefully you can find someone also.

 

Tracy and Tori

[jacobsmom]

Thank you for your response to my post! Did you daughter have an antiboby titer testing for strep? Do you remember what the results were? Thank you for the phone number. I will try to locate a doctor through the NIMH. Amy

 

 

Hi Amy,

Welcome to this discussion. I just discovered this forum myself last weekend and have felt such overwhelming relief that there are people who know and will discuss PANDAS. My daughter is 12 and she had her first onset in February. Since then we've had a roller coaster ride. I've kept a log of her symptoms and treatements and found that during times of antibiotic treatment for sinus infections (which have been chronic) her other symptoms improve dramatically. We use cognitive behavior therapy for her anxiety and panic disorder and she has been very successful with that.

 

I am now in the process of trying to talk her psychiatrist or pediatrician into trying the prophylaxis dose of antibiotic. They are at least willing to research the data and discuss the possibility with me. I have been calling all over the country trying to find a doctor who understands this condition and will give some guidance. I called the NIMH (where they did the prolonged study of antibiotics and Panda kids) and they gave me the name of a doctor here in Florida. Perhaps they know someone in Colorado as well. The number is 301-435-6650.

 

Good luck. I know its frustrating. I can't tell you how many people have looked at me funny when trying to describe what is wrong with my child. We actually changed pediatricians five months after my daughter first had symptoms at the suggestion of our psychologist. The doctor we use is involved in nuerotransmitter research and has a very holistic approach. Maybe you could find a ped with that type of background. We are blessed with doctors who have open minds and hopefully you can find someone also.

 

Tracy and Tori