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

[Guest guest]

At 10:09 PM 2/20/2010, you wrote:

There must be some guidelines to

determine if it is time to move on to something else. Does Elaine address

this anywhere?

I'd have to go through Elaine's website to find anything -- I'm not

recalling that she did, beyond her " one month trial " which most

of us have determined takes significantly longer for full

healing.

Constipation is the primary gut symptom at this point, correct?

What exactly is she eating, and how much? There may be some clues.

Since the objective of SCD is to eat only those foods which are readily

digested, you will see a reduction in the amount of stool.

I would ask those well-versed in handling low motility and constipation

to chime in here. Rett's apparently involves neurological dysfunction if

I understood what I read about it, and that could be a factor in the

constipation and the cessation of menstruation, as well as the diet. It's

amazing how often I've heard people say " SCD doesn't work! " but

when we probe into what the person is actually eating and how it is

prepared, very often the problem is not SCD, but the way it is being

implemented.

I'm not going to specifically say " Give it more time, " when

you've heard that before. But you've tried multiple diets and,

according to what you've told us, they've all failed to accomplish what

you're looking for, which is, I presume, some normalization of your

daughter's gut function. In 25 years, I tried just about every diet which

existed. SCD is the only which worked for me -- and it took several years

to normalize things with plenty of ups and downs. If you go off SCD,

where will you move next?

—

Marilyn

New

Orleans, Louisiana, USA

Undiagnosed IBS since 1976, SCD since 2001

Darn Good SCD Cook

No Human Children

Shadow & Sunny Longhair Dachshund

[Guest guest]

She has a good appetite. I know you must feel very alone with this.

What are your hopes for SCD? I know your first priority is to relieve her

discomfort, if that is possible with diet. On the other hand, there may be some

other things going on, and it is good that you are looking into the possibility.

The osteopenia and loss of periods makes me wonder about endocrine issues. Is

she mobile and active? Does she have enough weight on her to have periods? This

may not be diet related, and needs looking into her hormones.

I know it is heartbreaking to see a child suffer like this with a serious

condition, especially if she is in pain. Add to this that Rett Syndrome is

pretty rare. Is there a support group near you or on line that can help you too?

It is common for children with developmental delays to also have GI motility

issues. Does she have hypotonia? If the GI problems are related to a generalized

motor problem, then diet may improve, but not relieve the problem.

Like everyone on SCD, there are individual issues that have to be worked out, so

Rett Syndrome may pose it's own individual challenges. It may be that you will

have to look at many sources for advice, especially those that relate to Rett's.

In general, adding bone broth helps with GI healing. You may want to try more of

that while also pursuing the other help you have started getting. Peas are also

advanced foods that she may not be ready for. Purreing foods also helps with

digestion. Does she chew well? Any motor issues with chewing can also be hard on

the GI tract.

PJ

> > >There must be some guidelines to determine if it

> > >is time to move on to something else. Does Elaine address this anywhere?

> >

> > I'd have to go through Elaine's website to find

> > anything -- I'm not recalling that she did,

> > beyond her " one month trial " which most of us

> > have determined takes significantly longer for full healing.

> >

> > Constipation is the primary gut symptom at this point, correct?

> >

> > What exactly is she eating, and how much? There may be some clues.

> >

> > Since the objective of SCD is to eat only those

> > foods which are readily digested, you will see a

> > reduction in the amount of stool.

> >

> > I would ask those well-versed in handling low

> > motility and constipation to chime in here.

> > Rett's apparently involves neurological

> > dysfunction if I understood what I read about it,

> > and that could be a factor in the constipation

> > and the cessation of menstruation, as well as the

> > diet. It's amazing how often I've heard people

> > say " SCD doesn't work! " but when we probe into

> > what the person is actually eating and how it is

> > prepared, very often the problem is not SCD, but

> > the way it is being implemented.

> >

> > I'm not going to specifically say " Give it more

> > time, " when you've heard that before. But you've

> > tried multiple diets and, according to what

> > you've told us, they've all failed to accomplish

> > what you're looking for, which is, I presume,

> > some normalization of your daughter's gut

> > function. In 25 years, I tried just about every

> > diet which existed. SCD is the only which worked

> > for me -- and it took several years to normalize

> > things with plenty of ups and downs. If you go

> > off SCD, where will you move next?

> >

> >

> >

> >

> > — Marilyn

> > New Orleans, Louisiana, USA

> > Undiagnosed IBS since 1976, SCD since 2001

> > Darn Good SCD Cook

> > No Human Children

> > Shadow & Sunny Longhair Dachshund

> >

>