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

[Guest guest]

My 15 year old daughter has been on SCD for over a year now. At first she lost weight and her periods stopped for a few months. I was concerned. But then her weight stabilized and her periods started again.

I just wanted to say I do know how you feel a little bit. It's very stressful when it's your child going thru health issues.

Marla P.

Subject: Re: Daughter's period has stopped since being on SCD & other concernsTo: BTVC-SCD Date: Sunday, February 21, 2010, 2:39 PM

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> >>

[Guest guest]

She is in distress for most of the day. Curled up saying "OW".HI ,Don't know if this will help you but here is some advice from Elaine:Take care,PatConstipationElaine writes:Yes, the diet has reversed severe constipation. It is of no use to tell us what happened when you were not on SCD™. It is SCD™ that counts. The whole fiber story about helping severely constipated people is a story which just does not work and can cause other problems. I have had a good deal of experience with this problem. Not only have adults been helped by the following information but the SCD™ has saved a few babies from horrible surgery as these babies were given the diagnosis of Hirschprung's disease which makes it impossible for them to move their bowels. The result of this operation is a horror story. One Mother brought her baby on a TV interview with me in Canada and I can remember her saying to all of Canada (cross-Canada program): "You do not know what it is like to change a baby's daiper day after day which has only urine!" She was told to pry feces out with a rectal thermometer. In the meantime, the baby was doubled up with pain screaming night and day. One young child was getting prolapses of the rectum from straining. In both these cases, the children (including the baby) recovered in short time. The baby was put on the infant formula in the book and the child on a regular SCD™ diet.The first step is to get up one hour earlier in the morning if you usually have to go to work. The morning is the normal time for people to have a bowel movement - right after breakfast and the regimen I am giving you is based on this principle. Start this regimen on the weekend when you do not have to go out as it may cause urgency.Get on the introductory diet for two days. Then introduce the muffins, one per day, along with COOKED AND PEELED vegetables and fruits. Raw fruit and vegetables (with the exception of the ripe banana) can aggravate both diarrhea and constipation. When you are adjusted to the diet, we can then start the treatment for constipation altho the diet alone may do the trick. Introduce a few stewed prunes with your breakfast - about 3-4 for about one week. See if that helps along with the SCD™.If the diet and stewed prune do not make you go to the bathroom after a week to ten days, do the following:1) Go to the market and look for PRUNE NECTAR (legal, without sugar). If you cannot find prune nectar, buy prune juice (legal) in a jar. Simmer the contents of the jar to half the volume. In other words, if you start with one quart, simmer it down to one pint. Refrigerate.2) At breakfast, mix three tablespoons of the prune nectar with 1/2 cup Tropicana or freshly squeeze orange juice.3) Start your breakfast with this mixture. Then eat your regular specific carbohydrate breakfast but make sure you have a large cup of something hot. Either your coffee or tea. Then go to the washroom and see if anything happens. Read and relax. If this does not work the first day, repeat for two or three days. On the fourth day if this does not work, then insert a glycerin suppository (get in drugstore) while you are sitting on the toilet and hold it in for one minute. If it still doesn't work, do the same thing the next day. It would not hurt on the first day you try the glycerin suppository after breakfast to use another one before going to bed. I am trying to establish a normal pattern of defecation for you and it may take almost a month. However, the children responded in a short time without the suppository.So give it a try. Good luck.

[Guest guest]

,I just want to say that from a nutritional stand point, the diet you are feeding her looks to be outstanding. I can't see how the doctor can say that her ammonia levels are coming from a high protein diet. Forget about SCD for a moment, I was taught to eat a meat, two veggies, and a starch. All things considering, you are pretty close to that. I am not a nutritionist, but other than variety, you are feeding your daughter very well. I suspect the issue isn't the diet but one of the things other posters have suggested -- physical (such as the mild duodenum rotation or a possible blockage), hormonal/endocrine/liver, or Retts related. When my son had chicken pox, he had a strange after-healing effect. He started having intestinal spasms. It

was like my 7 year old was having true infant colic all over again. It would start in the evening and go periodically all night. He would vomit, usually the first thing, but the weird part was that he would know it was coming. He would just calmly state he was going to vomit and within a short time he would. There was no panic, no rush, he just knew. He would then moan and curl up/ or double up and the pain would be cyclical -- like a spasm. It caused gas/wind and constipation because things weren't moving normally. The hospital was no use whatsoever. Even paid medication didn't help greatly. What did help was a good strong anti spasmotic and after a couple of doses, the whole thing went away. Another thing was that his 'pain' although real to him, wasn't an intense kind of pain that would bring on pale skin, clammy skin, and fainting/shock. We recognized this because he was locked for 4

hours in the toilet of an airplane on an international flight -- moaning the whole time -- when the stewardess (a former pediatric nurse) came to talk with us. She just wanted to let us know that she didn't think it was serious/emergency and not to stress. AmeliaHusband UC 9 years, SCD 20 monthsLDN 3 mgTo: BTVC-SCD Sent: Sun, February 21, 2010 6:54:09 PMSubject: Re: Daughter's period has stopped since being on SCD & other concerns

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

>