jacobsmom

We were refered to an infectious diseases dr by an ENT we went in to see recently. Has anyone else been to an infectious disease dr, a rheumatologist, or an immunologist? What does a rheumatologist do? My son has been into so many drs and I am willing to search the earth to help him out but I don't want to create a monster here. Any other PANDAS patients out there who have gone to any of these types of drs and have any of them been helpful? Thank you for your reply!

My 10 year old has PANDAS and we are treating him with long term Penicillin twice a day. It seems from my reading that most of the PANDAS mom's who's kids use antibiotics have prescriptions for thier kids for Azith. Is there anyone who has a history of or is currently treating their child with Penicillin? Are we the only ones? We are wanting to get him off of these but I am so afraid of how he will react. We tried a week ago by cutting the pills in half for five days. He had major setbacks with rage, ocd, separation anxiety, etc. It was really bad. So he is back up to 250 mg twice a day. Any one else with a history of Penicillin treatment for PANDAS that helped your childs symptoms?

Chemar, I am so confused! Regarding your post....that says... ~~"re the immunity...yes! sadly where immuno boosting is so good for overall health and also for people with tic and tourette disorders, yet by supercharging the immune system and not knowing there are autoimmune issues going on, one makes things worse"~~ This is the first time I have ever heard of this! However, it makes sense. He has PANDAS and is on penecilin VK 250 mg twice a day and I want to get him off of them soon. I do think that PANDAS has to do with autoimmune problems and I am at a total loss!! I have been giving my son all kinds of things to boost his immune system such as Omegas Calcium Magnesium Probiotics L Glutamine Amino Acids Vitamin Shake All of these should be good for a healthy immune system. But am I harming him? Who do we go to who works with autoimmune issues? What type of doctor? We have a chiropractor, accupuncturist, neurologist, naturopath, pediatrician, environmental physician, and an ENT. I have never been told this although no one knows that much about PANDAS but I have mentioned that I believe it is an autoimmune type of disorder. Has it been proven to be autoimmune? Thank you so much for answering!

My son is on a lot of suppliments as well. He is having a difficult time swallowing all those pills. Can ALL suppliments be smashed up and put into yogurt? Are there any suppliments that you have heard of where that would not be safe? Is there anyone who has any other suggestions than yogurt, my son doesn't like yogurt at all. Thanks. Amy

I am sorry to hear that her OCD has gotten worse. Hopefully with the 500 mg once a week on a regular basis things will improve. We are ending our first week on theraputic penicilin and things are basically the same as when we started. Last night he had a rage attack and threw two marbles hard at me because a friend couldn't come over to play then he went into a 15 minute crying and screaming attack and his ticcing hasn't changed a bit. Sigh. This time last year and all of his life before that he wouldn't have so much as shrugged his shoulders at that little change in his plans. I hope that next week is much different for both of our kids.

I am very confused about one thing...does PANDAS ever go away or does it stay with them forever, do the antibiotics get rid of it sometimes? It sounds like from what I have read that the kids who try antibiotics eventually grow immune to them and once they are off they are much worse off than before the antibiotics. This is such a difficult thing to understand. I had read that Dr. Swedo was hopeful that there would be a cure for PANDAS but that was about 1996 since then the info I have been reading isn't so hopeful. I am really confused. Thanks for any info. Is your son still on the azith? If not how did he do once off of it? Thank you so much!!! Amy

Re: "We also went to the ENT who thinks her tonsils and adnoids may need to come out. " I went to a Tourette Syndrome Association support group this week and met a mom who's son had severe Tourettes (too long ago to be diagnosed as PANDAS officially) but had numerous strep infections and they had his tonsils and adenoids removed and has been tic and symptom free for 6 years since the operation. They had not expected it to help his TS symptoms but it seemed to cure him. I thought this was very interesting! It doesn't help me though since my son keeps having negative strep cultures so even though he has high titers we are having a hard time figuring out if it is a true PANDAS case since we can't locate the strep.

Since my last post about my son who has PANDAS we have had a HUGE development. I decided to test the entire family for strep throat regardless of the fact that we have NO symptoms and the whole family, mom, dad, and sister are positive!!! My PANDAS son remains negative!!! I am very confused. Have all of your PANDAS kids had numerous strep infections? Or have there been any of you who have had a hard time finding the strep? We did decide to test his nose and also analy and are awaiting the results. A question I have is if we can't find an active strep infection then does he really have PANDAS or is it Tourettes? His titers are high, his tics came on suddenly but we haven't found strep in his body. Maybe he has Tourettes and not PANDAS and his titers are high because there is a strep carrier in the family and his body is fighting it off and that is why the high titers. Any comments? We are now all on antibiotics as of yesterday and will re-test after about three weeks off the antibiotic. Great news!!! His physician agreed to profolaxis antibiotics! I don't think doctors are used to seeing joy when someone has a positive strep culture... but we are so perplexed by this PANDAS thing and having strep in the house helped his doc finally agree to long term antibiotics and I am hoping to see an approvement in his behavior and tics. Has anyone tried straight penecilin for thier PANDAS kids. He is on 250 mg twice a day. It seems like a lot of PANDAS kids here on this message board are on the azith. and I asked for that instead but the doc. referenced the study I sent to him from the NIMH and said that there seemed to be better results on penecilin. But 500 mg of azith. a week seems so much better for his body than 500 a day of the penecilin. Any suggestions would help so much! Would anyone consider e-mailing me directly? I have so many questions. Thank you! Amy

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

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.

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 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

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