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PANS/LYMES knowlegable therapist for child in NJ


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Our DS 10 pschologist was comfortable treating our child when he was thought to have sudden onset mood disorder but once diagnoased with Lymes/Pans he dismissed us. He says he doesnt really believe in Pandas or long term lymes. UUUHHGGG!!!! Our DS has on again off again issues and we need some support on how to deal with them. Does anybody have a person they can recommend?? We are in Central NJ. Our DS spends days in the house and on and off OCD plus just mentally dealing with this sudden illness that has attacked his mind and body overall!!!! Nightmares from hospital stay haunt him as well. Poor kid just needs some professional, experienced help. My husband and I could use some support as well. This is overwhelming. One day a healthy active child and then the next day he is homebound and sick all the time. Thank you in advance for any recomendations. We will travel if we have to.

 

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I would also recommend Dr. Chansky in Philadelphia; however, she is very busy. Sometimes it takes a while to get an appointment, and by the time you get there, the flare is over. Still, she can give you the tools to help your child on your own when he is flaring. She was a tremendous help to us.

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I will second Dr.Chansky's practice - they are very knowledgable! Not sure where in Central NJ you are .... But we are in Mercer County. It was about a 45 min. -1 hour drive to the office. Dd was too young at the time to really work with therapist but they gave USA consult. It was very informative. They also have a website that is helpful.

 

I see your son has Lyme/PANS .... are you treating infections? Just wondering what specialists you are seeing?? Seems like you need to address the infectious triggers or you maybe already are doing that. Sounds like you definitely need to change things up!

 

Hang in there

 

Teri

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My experience/perspective--for what it's worth...

 

My DD has OCD secondary to PANS. We need doctors and therapists. We are working with doctors who seem to know what they are doing. We have had difficulty finding therapists who are knowledgable and skilled with cognitive behavior therapy, particularly ERP, which is the research or evidence based approach to dealing with OCD. We ended up going to the Mayo Clinic in Rochester, MN for an intensive week of CBT/ERP. They were kind, compassionate, and highly skilled at this. When I inquired about the therapy, I was very clear about DD's medical diagnosis AND about our reasons for seeking their services--for the therapy, not medical advise. We had to go first for a psych eval and of course, there was some discussion, but we moved on. Mayo does not "support a diagnosis of PANDAS, but will treat the symptoms" according to staff in the neurology department, BUT they are awesome in providing treatment for OCD in another department.

 

Be clear about what you want from a therapist and ask for that. In our case, we wanted CBT/ERP. It did not matter what they thought about PANDAS/PANS or any other possible cause of the OCD. If you want something else, that's ok, just be clear about it.

 

My weakly formed analogy is a sports analogy. The opponents include strep, myco. pneum., coxsackie, OCD, lyme, bartonella, inflammation, etc. My DD's team includes herself, myself, and DH. I also serve as general manager, selecting coaches for offense, defense, and special teams. Each coach needs to do his/her job and not worry much about what the other coaches are doing. ;)

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