Daughter's period has stopped since being on SCD & other concerns

[Guest guest]

I started my 21 yr. old daughter who has rett syndrome on the SCD 3 1/2 months

ago for intestinal pain. It's not getting any better and she has not had her

period since even though she hasn't lost weight. In fact she has gained a

couple of pounds. She isn't getting any illegals.

She has some good days but not many. She has been dependent on enemas for 5

years to pass gas and stool and she is requiring more on a daily basis to help

move things thru otherwise she has significant outbursts.

I am just trying to figure out when the diet might not be the right one for

someone. I truly believe this diet is very helpful for alot of people so I am

not negating it at all. It's just that whatever diet we were following at a

certain time, it seemed that people would tell us we shouldn't stop even though

we weren't seeing any improvement even after a year on it. For example the GFCF

diet. We had her on it for 1 year and she only got worse and people would tell

me you need to stay on it longer but we finally decided no more. Than we did a

diet for Irritable bowel syndrome for a couple years and that brought little

relief but the diet group would say keep going. Finally now we are trying the

SCD and i had such high hopes and really read up on it but my daughter's has no

improvement in her pain, has lost bulk to her stool, needing more enemas/day,

periods have stopped, elevated ammonia levels in her blood.

I feel frozen as to what to do.

There must be some guidelines to determine if it is time to move on to something

else. Does Elaine address this anywhere?

[Guest guest]

I started my 21 yr. old daughter who has rett syndrome on the SCD 3 1/2 months

ago for intestinal pain. It's not getting any better and she has not had her

period since even though she hasn't lost weight. In fact she has gained a

couple of pounds. She isn't getting any illegals.

She has some good days but not many. She has been dependent on enemas for 5

years to pass gas and stool and she is requiring more on a daily basis to help

move things thru otherwise she has significant outbursts.

I am just trying to figure out when the diet might not be the right one for

someone. I truly believe this diet is very helpful for alot of people so I am

not negating it at all. It's just that whatever diet we were following at a

certain time, it seemed that people would tell us we shouldn't stop even though

we weren't seeing any improvement even after a year on it. For example the GFCF

diet. We had her on it for 1 year and she only got worse and people would tell

me you need to stay on it longer but we finally decided no more. Than we did a

diet for Irritable bowel syndrome for a couple years and that brought little

relief but the diet group would say keep going. Finally now we are trying the

SCD and i had such high hopes and really read up on it but my daughter's has no

improvement in her pain, has lost bulk to her stool, needing more enemas/day,

periods have stopped, elevated ammonia levels in her blood.

I feel frozen as to what to do.

There must be some guidelines to determine if it is time to move on to something

else. Does Elaine address this anywhere?