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January 9, 2015 at 9:43 am #3213kenmacMember
Recently my daughter has had a severe change in personality. She recently was diagnosed with asthma and was put on 2 inhalers and prednisone. It was Xmas eve and she started to get very emotional and throwing tantrums and getting violent. Then the next night it got even worse, wont sleep cause obsessed about being exhausted, urinates every 5 min and wipes excessively to the point of bleeding, and completely obsessed with sanitizer. We took her off prednisone and we thought she was getting better. But now back to square one, and now even more compulsions. Just recently talks about death and wonders why no can fix her. It’s tearing us apart cause we can’t help her. I just want my daughter back. We talked with one lady whose daughter had pandas and she thinks we are going through the same thing. My daughters doctor doesn’t believe us she just thinks were crazy, but we know our daughter and that’s not her. We do live in Boston area and know there are the best hospitals around, just want somewhere to turnJanuary 14, 2015 at 11:04 pm #3337kakrpaParticipant
Hi kenmac, so sorry to hear of what you all are going through. I suggest contacting Dr. Trifiletti about this…he is very knowledgeable about PANDAS/PANS and can help figure out what’s going on.January 21, 2015 at 2:17 pm #3338Barbara RosembergKeymaster
My apologies for the delay. Dr. Jenike has been extremely busy as of late, but I wanted to reach out to you while I wait for his response to your post.
We started a PANDAS program within the OCD and Related Disorders Program at MGH. Dr. Kyle Williams is the Director of the Behavior and Immunology Clinic. Please contact Paula Downes at 617-724-0198 firstname.lastname@example.org for more information and what is currently available for your daughter.
wish you and your family all the best,
BarbaraFebruary 8, 2015 at 3:07 pm #3339Dr. Michael JenikeMember
as Barbara noted above, we have started a PANDAS type clinic headed by Dr. Kyle Williams. contacting Paula is the way to start. i will copy this to Pauls and Dr. Williams. all best wishes,
Michael Jenike, MD
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