Feeling defeated all around.

[kimballot]

I posted to you exactly what she replied to my e-mail. There was no verbal conversation. She told me she would call me the Thursday afternoon after the panel meeting or the Friday morning. When I didn't hear from her on Friday evening, I emailed her. She replied on Sunday with what I posted.

 

Mama - It is great that you have at least SOME information from the folks doing the study and hopefully you will receive the list of antibiotic recommendations soon. Take that to your pediatrician when you ask for ABX. Also, if you made an appointment with a doctor who has seen other kids with PANDAS, take the ABX recommendations from the study with you.

 

While your child may meet all the listed criteria for the IVIG study, the researchers would be negligent if they gave IVIG to a child who really did not need it at the present time. I think that is what they are saying.

 

Please call them again for clarification and to get that antibiotic list.

[mamapanda]

I posted to you exactly what she replied to my e-mail. There was no verbal conversation. She told me she would call me the Thursday afternoon after the panel meeting or the Friday morning. When I didn't hear from her on Friday evening, I emailed her. She replied on Sunday with what I posted.

 

Mama - It is great that you have at least SOME information from the folks doing the study and hopefully you will receive the list of antibiotic recommendations soon. Take that to your pediatrician when you ask for ABX. Also, if you made an appointment with a doctor who has seen other kids with PANDAS, take the ABX recommendations from the study with you.

 

While your child may meet all the listed criteria for the IVIG study, the researchers would be negligent if they gave IVIG to a child who really did not need it at the present time. I think that is what they are saying.

 

Please call them again for clarification and to get that antibiotic list.

 

Thanks. I've emailed Rachel twice since she said that a researcher would be in contact with me (9 days ago). Still haven't heard from anyone. Just emailed her again. Taking my son to see a doctor on August 9th and I'd love their recommendations.

[thereishope]

Can you call her?