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

February 21, 2010

,Is your daughter eating a lot of protein in comparison to fruits, veggies, and fats? How do you know her ammonia levels are high? Was it through a test at the doctor's office and what did the doctor suggest? I think high ammonia levels are due to a problem with the liver. I don't understand it all, just did a quick search, and the short of it is that there might be an enzyme problem in the liver when it tries to break down the ammonia that is created when the body metabolizes amino acids and protein.AmeliaHusband UC 9 years, SCD 20 monthsLDN 3 mgTo: BTVC-SCD Sent: Sun, February 21, 2010 4:09:01 AMSubject: Daughter's period has stopped since being on SCD & other concerns

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?

February 21, 2010

Hi ,

The diet isn't a magic pill from the get go.

Many of us regress and have some really hard challenges in the begining even to

the point our flares are worse on the diet for a while. As time goes on good

days start to creep in and those become more and more.

I had menstrual issues for years.

Her situation may be due to the combo of her total ecology shifting and being on

a higher protein type diet. If this is the reason, this self corrects.

How long have her amonia levels been high?

Has she been to an integrative doctor at all?

Has she had stool testing done?

Jodi

>

> 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?

>

February 21, 2010

Hey PJ,

Thanks for pointing that out. I somehow confused posts and misread this. I

would of approached differently with my reply.

, Maybe you can go on PecanBread and post there.

See if Mimi or Sheila have any info for you.

Jodi

> > >

> > > 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