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DrOAB
DrOAB, Board Certified Pediatrician
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I am looking for a a Dr. to treat PANDAS in North Eastern Ohio.

Customer Question

I am looking for a a Dr. to treat PANDAS in North Eastern Ohio. I am at a loss. Most neurologist seem clueless and want to treat as Tourettes and don't believe PANDAS exists. However there is an immune component to the disorder. Do you know of a specialist that can help my son? I had found an immunologist but he just retired and his new replacements don't want to treat PANDAS. He has ben diagnosed by Dr. Murphy in Florida but that is not helping me find a Dr. locally and she is not able to prescribe meds over the state lines. Can you point me to someone who might have a clue and be willing to research to find the best treatment for my six year old son in OH. He has had this for five years already and it is getting worse with repeat exposure to strep.
Submitted: 6 years ago.
Category: Pediatrics
Expert:  Doctor G. replied 6 years ago.
Michele,
I'm sorry for your frustration.
Have you called the National Institutes of Health?
Customer: replied 6 years ago.

Age: 6; Male, Ohio


Already Tried:
We have been to several neurologists who treat him as tourettes with abilify 5 mg, zoloft 12 mg. and the immunologist was prescribing 300 mg of Omnicef a day prophylaxis. The immunologist at University Hospital Cleve is no longer praticing so we need to find another immunologist who will precribe long term Omnicef or Azith. We had a different immunologist who prescribed Pen vk but it did not work as well as the Omnicef. He still felt he needed to urinate compulsively. Right now my son is having an episode after exposure to strep where he is repetitive curling his toes and cracking his fingers against his body. I think he needs to try the Azith beause it has been said to work best for PANDAS because it works intracellular. Where can I find a local Dr. who would prescribe this? We live in N. Canton OH. Our neurologist is at Cleve Clinic. I can't find a Dr. in N. Eastern Ohio who understands PANDAS. It is the hardest thing to try to go through this alone without the support of a Dr.














Customer: replied 6 years ago.
I have called the NIH but they are no longer doing PANDAS studies. I have called Dr.'s around the country who study PANDAS and tourettes. I have contacted OCD specialists too. They suggested a Dr. in Chicago who does IVIG. That is so far away and last time we went to a Dr. out of state we didn't get any follow up or prescriptions. I am looking for someone local who can help him. It is so frustrating like fishing without a worm. I can't continue to take him Dr. to Dr. to get another Dr. who doesn't know how to treat him. Who would give him azith prophylaxis?
Expert:  Doctor G. replied 6 years ago.
This is indeed ludicrous. There is absolutely no reason why one physician cannot coordinate with another physician, be it out of state or out of country. What I suggest, and is not unheard of, is for a specialist in this to coordinate with a primary care doc or another specialist. It's a matter of them not wanting to. Anyone can prescribe zithromax prophylaxis. There is absolutely no reason why this can't be done.

If this was my child, I would demand that his primary care coordinate with the specialists.

I'm very sorry I could not be of more help. I will opt-out and perhaps another expert has better advice.
Customer: replied 6 years ago.
How do I get another Dr. who might know something about PANDAS here to hook me up with the name of a specialist in OH who has treated PANDAS before? What field should I be contacting? We have seen alergist, neurologist, immunolgist, psychologist and psychiatrist. I had an appointment next week with rheumatologist but was told today that she sent her last possible PANDAS patient to neurology. Neurologist seem to not believe in PANDAS. Help this is real and my son is living proof of it. After his last strep episode he is OCD, ADHD, emotional and craking his fingers and toes. No parent could or would make this up. These kids change overnight and become a different person. Help!!!
Expert:  Doctor G. replied 6 years ago.
Since I'm opted-out other experts will be able to look at the question, and hopefully someone will be able to help you.
Expert:  DrOAB replied 6 years ago.

Dear michele 223:

 

Since you live in Canton, OH, have you called to contact the Pediatric Neurologists at nearby Akron Children's Hospital? Call(NNN) NNN-NNNNor 1-800-358-5437 (1-800-358-KIDS) and ask if Dr. Enlow, Dr. Kulasekaran, or Dr. Timmons would assist in the medical management of a child with PANDAS. Dr. John Bower and Dr. Blaise Congeni of the Pediatric Infectious Diseases department may also assist in your son's care.

Customer: replied 6 years ago.
Dr. Congeni would only use pen vk. This is not true. http://www.journals.uchicago.edu/doi/pdf/10.1086/508773
Congeni said that was all NIH doumented to work. Dr. Enlow and Abdula suspected PANDAS but did not seem to know a treatment or want to try to treat. They just said wait and see. We see Dr. Erenberg at Childrens Cleveland Clinic. He treats Tourettes but does not believe in PANDAS. The closest I found to treating the PANDAS was Dr. Melvin Berger at University Cleveland but he has now left to go to Case to research full time. His new replacements don't want to touch PANDAS. We traveled to Florida to see Dr. Tanya Murphy but she only diagnosed him and gave treatment suggestions for him. Without a PANDAS Dr. who has treated before how do we treat the PANDAS symptoms? His ped says this is out of her realm. Have you heard of Web Pediatrics Dr. Kovasovick? He seems to be the only Dr. standing up to help parents going through this. However he is in Chicago. Maybe we should do a consult with him. He seems my only hope. I thought maybe you could suggest a Dr. in OH. Dr. D. Gilbert at Cinninnati is on alot of research articles on PANDAS. What do you know about him? Unless they have treated this before I don't think they get it.
Expert:  DrOAB replied 6 years ago.

Dear michele 223:

 

The journal article you referenced does support the use of erythromycin or azithromycin (or even IV cephalothin) versus strep bacteria carrier status, but not specifically versus PANDAS, where ongoing neuropsychiatric symptoms become particularly prominent with each episode of strep infection. If your son has been tested and confirmed to be a strep carrier, then his PANDAS symptoms could be expected to be continuous. Whether a strep carrier or not, I can see the sense of erythromycin or azithromycin prophylaxis versus PANDAS. I agree with Dr. Grinshteyn that the primary care physician could prescribe the macrolide antibiotic prophylaxis while the neurologist or psychiatrist managed the episodic neuropsychiatric symptoms. I might suggest the names of Pediatric Infectious Disease specialists at the children's hospital here in Norfolk, Virginia, but I am unfamiliar with Dr. Kovasovick or Dr. Gilbert. Still, it would not hurt to do a consultation with either of them to obtain a treatment plan that could be taken home to Canton and followed by your local physicians (perhaps with annual follow-up with the PANDAS specialist).

Customer: replied 6 years ago.
Can you find a better article supporting the use of azith for PANDAS cases? Parents I have found on line on PANDAS support sites admit it works the best to control the PANDAS symptoms. How can I convince the Dr's to try it. Others on PANDAS forums are not having a difficult time getting it prescribed. Why would Dr's in OH be so hesitant to prescribe it? I don't know if he is a strep carrier just has a bad reaction to exposure to strep.

Also, my son is doing a toe curling repetitive movement. He goes up onto the curled toes right then left. He does this over and over throughout the day every few minutes. He has been doing this since his last strep exposure six weeks ago. Do you think there is a way to get him to stop this? Could it cause damage to his body? I am guessing this is a OCD tic. Does it sound like a tic? He also cracks his fingers against his body. I am not as concerned about that since it shouldn't damage anything. However, the toe curling looks painful and difficult to do. What would be a good substitute behavior? Thanks.



Expert:  DrOAB replied 6 years ago.

Dear michele 223:

 

Here is an article that supports penicillin or azithromycin for PANDAS prophylaxis: http://www.ncbi.nlm.nih.gov/pubmed/15820236 . Perhaps relaying this article to Dr. Congeni would change his mind about the choice of antibiotic? If not him, then the primary doctor may use this data to write the prophylactic antibiotic prescriptions as well.

 

His constant toe curling does sound like an OCD tic, so management of the OCD would be the goal to stop this (i.e., it would be difficult or even pointless to train him in a substitute behavior for his feet). If he is actually putting weight on his toes while curling them, then this could lead to orthopedic concerns (e.g., male and female ballet dancers wear very hard toe shoes to protect their toes while standing en pointe). Wearing a normal hard-sole shoe, perhaps with padding at the toe area, could be a protective measure versus weight bearing. An orthopedic study has shown no finger damage from frequent joint cracking.

Customer: replied 6 years ago.
Our ped is worried about mid western resistance to Azith. That was her reply when I inquired about the Azith. If I bring her this article do you think I could persuade her to try it long term? Any other ideas to bring to her. She has been little support though this. What is your view about tonsil removal? He does not get strep just the reaction from exposure to people with the infection. What if we removed the tonsils? Could he get better?

About the toes, he does put pressure on them. I can't even figue out how he walks like this. It is hard to even immitate. It must feel good to him or he wouldn't do it. I have him in OT and hopefully betwen the sensory exercises (hard pounding to joints) he gets at therapy and the zoloft he has been on for about three weeks he will stop this soon. Do you think drawing attention to it and telling him to stop is good or bad for the anxiety?

I tried a psychologist but he didn't get the neurological component. He thought he was acting out for attention. I am waiting for an appointment with a ped psychologist. This is not easy to get into.

The school acts like he is fine there and makes me feel like I am imagining his issues. I guess he is holding it together well there. That is great but at home is a different story. How do I convince the school this is a medical issue that needs their support? I guess because he looks normal they don't believe the PANDAS exists. I am so overwhelmed here. If only I could get the support of one person!
Expert:  DrOAB replied 6 years ago.

Dear michele 223:

 

Even here in Virginia, there has been growing bacterial resistance to azithromycin, so I can understand the pediatrician's concern. You may show the article data to Dr. Congeni or the primary doctor and request an azithromycin trial. I am not sure what else would change their minds. Tonsil and/or adenoid removal might help lessen occurrences, but it is still possible to contract strep infection, the trigger for PANDAS exacerbation, even without these glands. In a calm monotone, you might mention once or twice (or perhaps once a week) that you would like him to stop walking on curled toes so his feet don't get hurt, but don't constantly draw attention to the habit, or it may worsen. A psychologist/psychiatrist with a pediatric focus does make sense. A care plan from the managing doctor, counselor, and/or occupational therapist that clarifies the steps the school should take would facilitate their staff involvement (e.g., instructions to remind him to walk with his heels flat). Often the school counselor can help relay such a plan to all pertinent staff.

Expert:  DrOAB replied 6 years ago.

Dear michele 223:

 

Did you have other related questions?

 

If I have addressed your concerns adequately, please click "ACCEPT" to give credit for my service. You may rely on our Experts, including myself, should another question arise. Take care!

Customer: replied 6 years ago.
I didn't get my questions answered with anything more then I already new. Sadly.

I needed a PANDAS expert in my area. I have tried to get a ped psychiatrist/psychologist Dr. Benore at the Akron children's hospital and they don't call me back. I am frustrated because I have been through their neurologist, and immunologists at the hospital and none of them have info to treat. His neuro at Cleve doesn't believe in PANDAS only Tourettes. I have read Azith works the best with the PANDAS but how do I get a local Dr. to prescribe it? I need help finding the Dr. who can treat him and has treated PANDAS before and write long term prescriptions for Azith? I am sadly disapointed with the medical community that nobody is trying to find a way to help these poor kids who are suffering with the PANDAS disorder. I don't think all these kids would exist with these symptoms if PANDAS were not a real disorder. Check out ACN lattitudes on PANDAS. to see more info on the disorder.from the parents who are struggling to get help for their kids.



Expert:  DrOAB replied 6 years ago.

Dear michele 223:

 

If you are unable to contact Dr. Benore's office directly, ask your Akron Children's Hospital neurologist or infectious disease specialist to personally give Dr. Benore a courtesy call requesting evaluation of your son (an insurance authorization from the specialist or primary doctor may be needed for such evaluation). After reviewing the azithromycin article data I provided, I am surprised as to why your pediatrician or Dr. Congeni, my former residency preceptor, would not be willing to prescribe this antibiotic per your request. Did you have them read the article printout while you were present and then give their opinion about an azithromycin trial? Unfortunately, experts in rare conditions are often just as rare. Finding a PANDAS expert close to your location may require the tedious step of researching the clinicians referenced in the bibliography of a reliable PANDAS article. Consider an email to Dr. L. A. Snider, one of the azithromycin article authors, to ask if s/he knows of medical colleagues in Ohio that may help you (copy/paste this address into your "e-mail to" slot: sniderl@intra.nimh.nih.gov).

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