Ketogenic Diet Survey

RSRF is conducting surveys to gather information on the efficacy of the ketogenic diet for children and adults with Rett Syndrome who suffer from intractable seizures. If your child has tried the ketogenic diet 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 initiated the ketogenic diet

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

Has your child tried any other dietary treatments for seizures (ie: Atkins, Specific Carbohydrate Diet, etc.)?

Yes       No

If so, were any of these treatments successful?

Yes       No

Was the ketogenic diet initiated inpatient or outside the hospital?

Inpatient       Outside the hospital

Length of time on diet

Anti seizure drugs tried before initiating the diet

Were you able to reduce or discontinue the anti seizure drugs during the diet?

Yes       No

Anti seizure drugs used after the diet, if any (enter NA if none)

Age when seizures started

Types of seizures

Frequency of seizures before diet

Frequency of seizures after diet

Would you consider the ketogenic diet to be a

Complete success (95-100% improvement in seizure frequency and/or intensity)  Major success (66-94% improvement in seizure frequency and/or intensity)  Moderate success (40-65% improvement in seizure frequency and/or intensity)  Minimal success (10-39% improvement in seizure frequency and/or intensity)  Unsuccessful (no improvement)

How early into the diet did you see improvements?

Did these improvements hold for the duration of the diet?

What side effects did your child experience on the diet?

How have you managed those side effects?

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

Is your child fed orally, via g-tube or combination?

Has the diet been difficult to implement?

Did the diet require lots of fine-tuning?

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

Yes       No

If your child was already weaned from the diet was the transition difficult?

Yes       No

Did seizures return?

Yes       No

Are they different in any way from seizures prior to the diet?

Has your child gained or lost weight on the diet?

Gained weight       Lost weight

How much height did your child gain during the diet?

How would you rate your child’s overall health during the diet?

In what ways did your child’s participation in the ketogenic diet affect the rest of your family?

Has your child tried Vagal Nerve Stimulation?

Yes       No

If so, was it successful?

Yes       No

Any further information you’d like to share about your experiences using the ketogenic diet?

What do you know now that you wished you knew before starting the diet?

I give my permission to share this information with researchers

Yes       No