Guest guest Posted November 15, 2011 Report Share Posted November 15, 2011 Hi I am new to this group, so I apologize if these questions have been asked and answered. My daughter is 11 and her symptoms first started at 4. At the time I heard about PANDAS and started reading up what I could find on the internet. Her pediatrician had never heard of it and other doctors I mentioned it to said it was nonsense. She was eventually diagnosed with OCD when she was 8. Anyway, my questions are 1. if her OCD was caused by PANDAS - could it still be causing her problems now or would it just have caused the initial symptoms that then led to the development of OCD? 2. I see from other messages that there is a test for PANDAS - I would like to find out more about this, if someone could recommend a good resource. I have so many questions, as I have felt so alone all these years in trying to help my daughter. We have been to numerous therapists and also tried medication for 2 years and nothing has really helped. I am really glad I found this group. Thanks in advance. Donna. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2011 Report Share Posted November 15, 2011 Hi Donna, if you add your state/area, perhaps someone can recommend a specific doctor they know or have heard of. In the meantime, I know these 2 are popular, well known, and some have travelled to see them: Dr. Trifiletti, in NJ http://www.site.neurokidsr.us/ Dr. Bouboulis, in CT http://www.advanced-allergy.com/ Yes, a child with PANDAS that began much earlier with OCD could still be having symptoms years later (i.e., your daughter at 4 and now 11). Some with PANDAS can have symptoms/behaviors " come and go " and just return with future illness or other, stay a few weeks and then wane. Others have ongoing behaviors/symptoms. Generally the OCD symptoms should subside with treatment for PANDAS, but it's not that easy for many. So if your dd's began due to PANDAS, yes she can still be having OCD due to it and would still be considered PANDAS OCD. It doesn't trigger OCD in such as way as to not be part of PANDAS. (is that confusing?) Regarding her medication, have you tried many? At treatment doses, higher ranges? Even those with PANDAS may need an OCD med at some point. Though in your case, you haven't tried treating PANDAS yet (since no diagnosis yet). The therapy for either cause is still CBT with ERP. Do you feel her therapist is a good one for treating OCD, experienced? They can be difficult to find! Just some quick thoughts, > > Hi > I am new to this group, so I apologize if these questions have been asked > and answered. > My daughter is 11 and her symptoms first started at 4. At the time I heard > about PANDAS and started reading up what I could find on the internet. Her > pediatrician had never heard of it and other doctors I mentioned it to said > it was nonsense. She was eventually diagnosed with OCD when she was 8. > Anyway, my questions are 1. if her OCD was caused by PANDAS - could it > still be causing her problems now or would it just have caused the initial > symptoms that then led to the development of OCD? > 2. I see from other messages that there is a test for PANDAS - I would like > to find out more about this, if someone could recommend a good resource. > I have so many questions, as I have felt so alone all these years in trying > to help my daughter. We have been to numerous therapists and also tried > medication for 2 years and nothing has really helped. > I am really glad I found this group. > Thanks in advance. > Donna. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2011 Report Share Posted November 15, 2011 Thanks so much for your reply. We live in Houston, Texas, and I would appreciate any recommendations. The problem I am having is that my daughter has been to so many different therapists that she doesn't want to go to any more. Regarding the medication, we were under the care of a psychiatrist so I assume she would have given the correct dosage. What is the test and treatment for PANDAS? Who diagnoses it? Do you think a tonsillectomy would help at all? Thanks so much, Donna. > > > > Hi > > I am new to this group, so I apologize if these questions have been asked > > and answered. > > My daughter is 11 and her symptoms first started at 4. At the time I heard > > about PANDAS and started reading up what I could find on the internet. Her > > pediatrician had never heard of it and other doctors I mentioned it to said > > it was nonsense. She was eventually diagnosed with OCD when she was 8. > > Anyway, my questions are 1. if her OCD was caused by PANDAS - could it > > still be causing her problems now or would it just have caused the initial > > symptoms that then led to the development of OCD? > > 2. I see from other messages that there is a test for PANDAS - I would like > > to find out more about this, if someone could recommend a good resource. > > I have so many questions, as I have felt so alone all these years in trying > > to help my daughter. We have been to numerous therapists and also tried > > medication for 2 years and nothing has really helped. > > I am really glad I found this group. > > Thanks in advance. > > Donna. > > > > > > Quote Link to comment Share on other sites More sharing options...
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