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

[Guest guest]

,

Although many parents have reported improvement with kids with ASD's on SCD,

Rett syndrome is a very specific case. It is classified with the ASD's but as

you know, it is a genetic subset with a unique set of symptoms. I do not know if

anyone has addressed SCD and Rett syndrome specifically.

Have you asked the pecanbread group on Yahoo? There are many more parents there,

and possibly others with your set of circumstances.

Jodi is correct though, sometimes the diet has to be adjusted to people's

particular needs and not everyone tolerates all foods.

PJ

> >

> > 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]

Thank you all so very much for your input and replies. To answer some of your

questions and give you a little more information regarding my daughter. We did

have her blood drawn a couple weeks ago because she is having excessive

urination and sometimes it smelled like ammonia. It did show elevated ammonia

levels and doctor felt like from all the protein in her diet. THe doctor got us

a referral to a nutritionist who is with an integrative/holistic group at one of

the hospitals where I live but its not for a couple more weeks yet. We also had

a doctor do stool test for parasites/blood/ etc.. All came back normal. She

also gave us a referral to an integrative medicine doctor to get his viewpoint.

Don't have an appt. yet there. Currently this is her diet:

Breakfast:

1.tilapia

2.well cooked pureed green peas/spaghetti squash mixed together

3.jello made with legal grape juice and also jello made with legal OJ and cooked

pureed peaches

AM snack:

1.chicken meatballs made with ground chicken, purreed zucchini/spaghetti squash

with BTVC spagetti sauce

2.bread made with 1 egg, 1 tablespoon pecan butter, baking soda

3. jello

Lunch:

1.Chicken soup

2.bread as above

3.purred zucchini/spaghetti squash

4.jello as above

PM snack:

1. 2 pecan butter brownies

2. cooked pureed pearsauce

Supper:

1.tilapia

2.pureed green peas/spaghetti squash

3.jello

Snack:

chicken soup

jello

vegie

Tried but didn't tolerate bananas, apples, carrott, butternut/acorn squash,

green beans, spinach, strawberries, cauliflower, avocados

We also have tried the goat yogurt but didn't tolerate well so had to stop. Is

on no probiotics. She wasn't able to tolerate any probiotic even before starting

the diet and has always had very difficult time with any supplements.

We have had numerous GI workups. She has mild malrotation of duodenum but

surgeon didn't see need to do anything with it. Had reflux but isn't an issue

right now. Have had endoscopies and shows healing. Never tolerated any of the

antireflux meds. Gave her significant intestinal gas and pain. Have controlled

with diet.

Motility tests show fast stomach emptying and slow small bowel transit. THis was

done 5 years ago. Has enlarged rectum (probably from all the enemas).

Gallbladder tests all negative. Hydrogen breath test negative.Every other test

didn't show anything. Has trouble with fat and fiber.

Just recently found out she has osteopenia which is thinning of the bones. Her

doctor wants her on 1000mg calcium and 400 - 800 IU of vitamin D. Found a

calcium supplement at a local nutritional wellness center that has high quality

products. Bought one that has calcium and vitamin D and no illegals in it. It

is capsule form and I open up and mix with her food. Starting out small amounts

first. Just started 2 days ago and seems to be having more intestinal pain now.

Also started magnesium with product called Water Oz magnesium. No illegals in

it. Starting at small amount. It is crucial that she gets the calcium/Vit D3.

ALso hasn't tolerated digestive enzymes either. We tried Houston's Zycarb about

a month ago and it gave her terrible intestinal pain/gas.

She is in distress for most of the day. Curled up saying " OW " . We are hoping to

get to see a rectal /colon surgeon soon to see if this mild duodenal rotation

needs to be looked at again and to also rule out any internal rectal prolapse,

etc..

There are many days we are doing 4 enemas a day just to relieve some discomfort.

When we first started the diet she had some really good days but didn't last.

Often seems like she has a honeymoon phase when we start a new diet or eliminate

certain foods and then she is back at square one.

Yes, I have posted on the pecan site and did consult with a SCD counselor who

recommended to get more vareity of foods and vegies into my daughter and wait on

the probiotics/yogurt.

Haven't found any other families with Daughter with rett syndrome using this

diet. Not on pecan website or the rett group I am on.

Feeling pretty alone with it and don't know if should keep going.

Wearing me down seeing my daughter like this every day for quite some time now.

We have a new primary doctor and so far she has been caring and listening and

got me the referral to nutritionist so we will see how that goes.

> >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

>