Feeling Hopeful-Daughter admitted into clinical study with NIMH

[jferinga]

We started a couple threads previously. Our daughter had an acute onset November 9, 2013. Symptoms were minor for several days and peaked on November 14, 2013. The acute onset included involuntary motor movements and hopping/skipping between steps (complex motor tics). So many more symptoms became present through Novemeber 14.

 

Our pediatrician made the referral to neurology. The neurologist stated that PANDAS and PANS is theory so we started hunting for doctors and new insurance. Since I work with kids with psychiatric disorder and the symptoms appear to be more psychiatric in nature I decided to talk with a psychiatrist. The psychiatrist in our insurance group agreed that our child displayed all the symptoms of PANS and or PANDAS. The pediatrician was still clueless how to treat this since she needs an infection to begin antibiotics.

 

On November 26 we were notified by teh National Institute of Mental Health that our child could participate in a study. It turns out the NIMH is doing a complete medical evaluation to diagnose and check for known PANDAS/PANS triggers and other neurological/auto-immune disorders. We will be coming home with a treatment plan for our child. We understand treatment may be made for some things and not others.

 

Mom was in the pediatrician's office at the time I was notified. A doctor at the NIMH called the pediatrician; who flat refused to treat with antibiotics, and discussed beginning antibiotics. The pediatrician immediately prescribed a daily dose of 2000 mg of Amoxicillin (1000 mg 2 times per day with a body weight of 45 lbs.

 

When we return I will post a list of all tests and or procedures with a reason why they were performed. I hope this information will help everyone else who is struggling with this.

[FLmom]

How did you get in on the study? Are they still accepting?

[Mayzoo]

How did you get in on the study? Are they still accepting?

 

Here is a list of the NIMH studies related to PANDAS. I am not sure which one the OP is in. I think if you click on a study, it will tell you how to contact them with the study ID #.

 

http://www.clinicaltrials.gov/ct2/results?term=PANDAS&Search=Search

[Mayzoo]

We started a couple threads previously. Our daughter had an acute onset November 9, 2013. Symptoms were minor for several days and peaked on November 14, 2013. The acute onset included involuntary motor movements and hopping/skipping between steps (complex motor tics). So many more symptoms became present through Novemeber 14.

 

Our pediatrician made the referral to neurology. The neurologist stated that PANDAS and PANS is theory so we started hunting for doctors and new insurance. Since I work with kids with psychiatric disorder and the symptoms appear to be more psychiatric in nature I decided to talk with a psychiatrist. The psychiatrist in our insurance group agreed that our child displayed all the symptoms of PANS and or PANDAS. The pediatrician was still clueless how to treat this since she needs an infection to begin antibiotics.

 

On November 26 we were notified by teh National Institute of Mental Health that our child could participate in a study. It turns out the NIMH is doing a complete medical evaluation to diagnose and check for known PANDAS/PANS triggers and other neurological/auto-immune disorders. We will be coming home with a treatment plan for our child. We understand treatment may be made for some things and not others.

 

Mom was in the pediatrician's office at the time I was notified. A doctor at the NIMH called the pediatrician; who flat refused to treat with antibiotics, and discussed beginning antibiotics. The pediatrician immediately prescribed a daily dose of 2000 mg of Amoxicillin (1000 mg 2 times per day with a body weight of 45 lbs.

 

When we return I will post a list of all tests and or procedures with a reason why they were performed. I hope this information will help everyone else who is struggling with this.

 

Congrats, I hope you get a direction

[jferinga]

We returned and have confirmation. We are now working with our medical insurance provider to get coverage of IVIG. When all results are receivedI will update.