Vagal Nerve Stimulation (VNS) Survey

RSRF is conducting surveys to gather information on the efficacy of the Vagal Nerve Stimulation (VNS) for children and adults with Rett Syndrome who suffer from intractable seizures. If your child has tried VNS please participate in our survey. Data compiled from this survey will be shared with you via the RSRFNewsAlert, website and quarterly newsletter. The data will also be made available to the research community. We thank you in advance for your help.

Optional Information

Your Name

Name of Child

Required Information

Email Address

Child's Date of Birth

MONTH January February March April May June July August September October November December     YEAR Before 1980 1980 1981 1982 1983 1984 1985 1986 1987 1988 1989 1990 1991 1992 1993 1994 1995 1996 1997 1998 1999 2000 2001 2002 2003 2004 2005

Has your child tested positive for an MECP2 mutation?

Yes       No

If so, what is the specific mutation?

Month and year your child received the VNS

MONTH January February March April May June July August September October November December     YEAR 1980 1981 1982 1983 1984 1985 1986 1987 1988 1989 1990 1991 1992 1993 1994 1995 1996 1997 1998 1999 2000 2001 2002 2003 2004 2005

Anti seizure drugs tried before initiating VNS

Anti seizure drugs used after VNS was received

Have anti-seizure drugs been reduced or eliminated?

Same Reduced Eliminated

Age when seizures started

Types of seizures

Frequency of seizures before VNS

Frequency of seizures after VNS

Have you seen improvements due to VNS?

Yes  No

If so, how long did it take to see improvements after surgery?

How soon after activation did you see improvements?

Have these improvements held over time?

Do you deem VNS a success?

Yes No

In what ways has the VNS been helpful (check all that apply)

Eliminating seizures completely Reducing seizure frequency Reducing seizure intensity Interrupting seizures in progress Preventing the need for emergency measures to stop seizures Allowing anti-seizure medications to be reduced or eliminated

Do you use the VNS magnet?

Yes No

How effective is it in interrupting seizures?

What side effects did your child experience with VNS?

How have you managed those side effects?

Has your child experienced any benefits from the VNS not related to seizure control?

Did the surgery have any complications?

Did the VNS require lots of fine-tuning?

Did you feel the support you received from your VNS team was adequate?

Yes       No

Has your child tried the ketogenic diet?

Yes       No

If so, was it successful?

Yes       No

Any further information you’d like to share about your experiences using VNS?

What do you know now that you wished you knew before VNS?

I give my permission to share this information with researchers

Yes       No