dd update-its PANDAS

January 5, 2012

Hello Everyone! Happy New Year to You all!

I wanted to give everyone an update on my (13 year olds) dd progress. She was

clobbered with a very debilitaing, sudden onset case of OCD in September 2011.

(Tested high w/ Micoplasma in November) SSRI Meds helped somewhat but she had a

bad reaction when we tried to increase the dosage and after reaching out and

hearing from many of the wonderful people in this group we ended contacting

and getting in to see Dr. K in Hinsdale, IL who put her on a steroid burst in

December. (At the time I was ready to have her attend an Intense Outpaitent

Program with CBT/ERP specifically for OCD but wanted to follow up on

the possible PANDAS aspect before commiting to that program because her

MicoPlasma reading came back as high.)

On steroids DD symtoms did decrease quite a bit and there were a few days within

the 3 week period where she was almost her old self. It was wonderful to get

her back even for a short time. After reviewing, the Dr. said her response to

the burst was positve, which supports the diagnosis of PANDAS. We now are

looking at jumping right into IVIG treatments since she has been pretty much

disabled since this began. She is getting progressively worse each day now that

the Steroids are wearing off -- its been a rough week for us all once again

dealing with the building amount of extreme fear and anxiety that paralizes her

and affects the entire family. I just want to say Thank You to all who have

shared their stories and offerd their support. I dont know how I could have

survived the last few months without you. We do have a clear path at this point

and hopefully very soon I will be in a position to offer some support and hope

to others as

well.

I am a little nervous about the IVIG treatment and very concerned with the

process and the cost involved so if anyone has had any experieance with this I'd

love to hear from you. We are meeting with the Dr. in one week to go over all

before we schedulle the IVIG so the more info/questions I have ready -the

better. Also, on top of all this my dd has decided she doesnt like to brush

her teeth. She says its too gross. (grosser than NOT brushing?!) Any

suggestions to help that would be welcome. Also, at this point we have a team

of drs-- phychiatrist, phychologist, regular pediatrician, allergist, and

Pediatircian/Pandas Dr. on our speed dial. (soon to add the dentist to the list

as well!) Due to the PANDAS diagnosis is it best to consolidate for a time and

just see the PANDAS specialist? The phych was for the meds, the pychologist

provided counseling (no CBT/ERP). This is exahusting! Your input and thoughts

would be much

appreciated.

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