Re: I caved in at day 5 because my son was so weak....help!

[Guest guest]

There are some children who have mitochondrial defects who become extrememly

weak with low carb diets. Don't know if this applies here . . . but it's a

thought. (The mitochondria are the " energy factories " in our body cells.)

Alice, Mama to , 7, ASD, SCD 3 months

[Guest guest]

Hi Melinda,

My son exhibited a very bad initial reaction when he started SCD

several years ago and I also considered quitting the diet. He had

digestive problems and felt very weak and vomited once. This die off

reaction lasted 10 days or 2 weeks.

Prior to SCD he consumed huge amounts of rice. He is doing very well

with SCD and these symptoms have never returned.

This section of our website might be helpful:

http://www.pecanbread.com/badreaction.html

When my son was younger he was diagnosed with a mitochondrial disorder.

Mimi

>

>

> I have a six year old son with PDD-NOS. We began gfcf at age 3 and

> have been removing one food after another since. For about 2 years,

> he has eaten rice or rice pasta, rice crackers, a wide variety of

> meats, and broccoli. He drinks water. I tried SCD two summers ago

> because I was convinced that the rice couldn't be good for him. I

> stopped after 3 days because he became so ill (projectile vomiting)

> and lethargic. I began again this week more determined than ever to

> eliminate the rice. He skipped breakfast on Monday but ate lunch of

> meatballs and spaghetti squash. For dinner, veal meatballs with the

> squash mixed in with a beef broth. He woke up multiple times during

> Monday night and drank huge amounts of water. Knowing this was not

> the intro diet, I made the chicken soup from BTVC. Tuesday, he ate

> the intro diet consisting of soup with pureed carrots and broiled

> beef made into meatballs. He was still drinking and perky. Wednesday

> morning he had soup again but was extremely tired and fell asleep at

> 9 am after sleeping a full night. He progressively became more and

> more lethargic and was just sitting on the couch sleeping on and

> off. I kept up with the chicken soup and beef patties. He vomited

> clear fluid Wednesday at 5 pm which smelled like bile, but no food.

> Then he ate more intro soup and veal meatballs. He was perky

> Wednesday evening and played and danced with his brother. On

> Thursday, he vomited first thing after waking up which had food from

> the night before in it. He had lost 3 pounds and could not lift his

> head. We began forcing ice chips made from the SCD electrolyte

> drink. At no point did we see improvement, but by last night I was

> getting scared. He finally accepted some applesauce before bed and

> slept all night. Today,I gave him a small portion of rice pasta for

> breakfast and lunch, along with legal meatballs. I need help here

> because this is the second time my son has become frighteningly ill

> when I am trying to implement this diet. His eyes and face are

> sunken and he is visibly thinner than he was on Monday. I have tried

> to talk to other parents, but no one so far has seen this type of

> reaction and had a kid so rigid that he won't accept the legal

> foods. Has anyone done this gradually? Any suggestions would be

> most appreciated!

>

> Melinda

[Guest guest]

Just to clarify my post below - - I was referring to only the intro as being

low carb . . . it's not the first time I've read about children getting

really weak on the intro . . . when more carbs are added later they do

better . . .

Alice, Mama to , 7, ASD, SCD 3 months

_____

There are some children who have mitochondrial defects who become extrememly

weak with low carb diets. Don't know if this applies here . . . but it's a

thought. (The mitochondria are the " energy factories " in our body cells.)

[Guest guest]

> There are some children who have mitochondrial defects who become extrememly

> weak with low carb diets. Don't know if this applies here . . . but it's a

> thought. (The mitochondria are the " energy factories " in our body cells.)

One would want to get a lot of juice, gelatin and carrots in during the intro

which only lasts two days and then start adding squash, honey, pear and avocado

(gradually) to counteract it. SCD is not a low carb diet but the two day intro

diet is rather high protein.

Carol F.

SCD 4yrs, Celaiac

[Guest guest]

>

>

> I have a six year old son with PDD-NOS. We began gfcf at age 3 and

> have been removing one food after another since. For about 2 years,

> he has eaten rice or rice pasta, rice crackers, a wide variety of

> meats, and broccoli. He drinks water. I tried SCD two summers ago

> because I was convinced that the rice couldn't be good for him. I

> stopped after 3 days because he became so ill (projectile vomiting)

> and lethargic. I began again this week more determined than ever to

> eliminate the rice. He skipped breakfast on Monday but ate lunch of

> meatballs and spaghetti squash. For dinner, veal meatballs with the

> squash mixed in with a beef broth. He woke up multiple times during

> Monday night and drank huge amounts of water. Knowing this was not

> the intro diet, I made the chicken soup from BTVC. Tuesday, he ate

> the intro diet consisting of soup with pureed carrots and broiled

> beef made into meatballs. He was still drinking and perky. Wednesday

> morning he had soup again but was extremely tired and fell asleep at

> 9 am after sleeping a full night. He progressively became more and

> more lethargic and was just sitting on the couch sleeping on and

> off. I kept up with the chicken soup and beef patties. He vomited

> clear fluid Wednesday at 5 pm which smelled like bile, but no food.

> Then he ate more intro soup and veal meatballs. He was perky

> Wednesday evening and played and danced with his brother. On

> Thursday, he vomited first thing after waking up which had food from

> the night before in it. He had lost 3 pounds and could not lift his

> head. We began forcing ice chips made from the SCD electrolyte

> drink. At no point did we see improvement, but by last night I was

> getting scared. He finally accepted some applesauce before bed and

> slept all night. Today,I gave him a small portion of rice pasta for

> breakfast and lunch, along with legal meatballs. I need help here

> because this is the second time my son has become frighteningly ill

> when I am trying to implement this diet. His eyes and face are

> sunken and he is visibly thinner than he was on Monday. I have tried

> to talk to other parents, but no one so far has seen this type of

> reaction and had a kid so rigid that he won't accept the legal

> foods. Has anyone done this gradually? Any suggestions would be

> most appreciated!

>

> Melinda

Hi, Melinda!

My son of 5 yrs started the diet a month ago. He was a child that

lived on rice, corn and millet bread and pasta. He did not appreciate

alot of foods on the intro diet and preferred to fast in the

beginning. He emotionally grieved the loss of the former staples with

tears etc. He became lethargic, napping twice a day and on day 2

vomitted all afternoon down to the bile etc. I had to suspend his

regular activities because he was literally sick! He,himself, after

the vomitting episode suggested avocado, so I started giving him that.

There were alot of eggs and various pancakes(squash, banana, chicken)

After 5 days, he started to return to his more regular activities with

a lower energy level. He, also, lost weight. Then energy levels

returned to more normal levels when he was getting sufficient

nourishment(proteins, carbs). Now, I am at a stage where I am

preparing to implement a low phenol diet because he seems to show the

signs of phenol sensitivity. If you decide you really want to give

the diet a try, have you considered explaining it to him and then

digging your heels in and getting support to get over the rough spots?

[Guest guest]

At this point, I would not continue w/SCD for your son. Get him pedialytes,

replenish his electrolytes. These children are first and foremost, FRAGILE.

You did not cave, you followed common sense. Your son could have ended up

in a very grave situation. While you contemplate your next decision, perhaps

check his MTHFr mutation. There are two genes with two possible outcomes.

Four possible mutations. Children with four mutations are more fragile than

those with one or two. Also, examine his COMT status. This will help to show

which supplements are damaging to your child. Even certain antibiotics such

as flagyl can be incredibly dangerous for children with MTHFr mutations and

overmethylated COMT status. Feed him whatever you can to get his strength

back. I'll pray for him.

Sharlene

[Guest guest]

I don't have experience like yours and so I'm not claiming to have an

answer. However, I wanted to throw out some suggestions simply as a

brainstorming exercise and hopefully something will click for you and

lead you in the right direction.

I want to mention that I know a woman who's daughter could not tolerate

any form of meat at all. She was not SCD but would vomit anytime she

ate meat. This girl inately put herself on a vegetarian diet at a very

young age. The parents were very worried and still tried to get her to

eat meat 'for health reasons'. This was the same child who, as an

infant had projectile vomiting with cow based product but later thrived

on goat milk product. Even as a teenager, she found that if she ate the

smallest bit of meat if she went out with her friends (as teens are wont

to be like their friends), she would come home and be sick for two days

and say to her Mom, " I don't know why I do this to myself. " (I have

since read papers that suggest meat lectins may have something to do

with some people reacting adversly toward meat. There's nothing really

definitive though.)

I'm not saying this is your answer. I guess I'm just offerring this as

something for you to think about as a possibility.

Some other thoughts...

What if you added avocado to his diet? They are really packed with

nutrients. So, if he doesn't have a negative reaction to avocadoes

maybe they could be his answer?

Perhaps he is reacting to one of the starting foods. Can you try

changing you starting foods?

Another thought... what if you weaned him off rice? So, go from

everyday to 3 times a week for four weeks and then twice a week for four

weeks, etc. If profound die-off is the problem, hopefully that would

slow it down enough for his body to cope better.

Are you doing yoghurt? I forget... sorry. Is it possible he's having

reaction to animal milk product? Perhaps nut milk yoghurt would be the

answer?

Last thought, and it's not going to be very popular... We are all built

differently and rules are always broken on this planet. Is it possible

that this diet is not the answer for him?

I do know a family who has a child who does his best on SCD but with

rice. That approach is not promoted at pecan bread but as I said

before... we are all different and there *are* exceptions to the rule.

My most definite thought is that you should not settle for accepting

such horrendous health conditions for your child. Weight loss is not

acceptable at all (except in very certain circumstances). Sunken eyes

are urgent. Do what you have to, to get him good and strong. I know

you don't know me, but you have my support all the way regardless of the

direction you take.

((((((hugs))))))

KimS nov 2002 celiac family

>

>Subject: I caved in at day 5 because my son was so weak....help!

>

>

>

>I have a six year old son with PDD-NOS.

>Melinda

>

>

[Guest guest]

I don't have experience like yours and so I'm not claiming to have an

answer. However, I wanted to throw out some suggestions simply as a

brainstorming exercise and hopefully something will click for you and

lead you in the right direction.

I want to mention that I know a woman who's daughter could not tolerate

any form of meat at all. She was not SCD but would vomit anytime she

ate meat. This girl inately put herself on a vegetarian diet at a very

young age. The parents were very worried and still tried to get her to

eat meat 'for health reasons'. This was the same child who, as an

infant had projectile vomiting with cow based product but later thrived

on goat milk product. Even as a teenager, she found that if she ate the

smallest bit of meat if she went out with her friends (as teens are wont

to be like their friends), she would come home and be sick for two days

and say to her Mom, " I don't know why I do this to myself. " (I have

since read papers that suggest meat lectins may have something to do

with some people reacting adversly toward meat. There's nothing really

definitive though.)

I'm not saying this is your answer. I guess I'm just offerring this as

something for you to think about as a possibility.

Some other thoughts...

What if you added avocado to his diet? They are really packed with

nutrients. So, if he doesn't have a negative reaction to avocadoes

maybe they could be his answer?

Perhaps he is reacting to one of the starting foods. Can you try

changing you starting foods?

Another thought... what if you weaned him off rice? So, go from

everyday to 3 times a week for four weeks and then twice a week for four

weeks, etc. If profound die-off is the problem, hopefully that would

slow it down enough for his body to cope better.

Are you doing yoghurt? I forget... sorry. Is it possible he's having

reaction to animal milk product? Perhaps nut milk yoghurt would be the

answer?

Last thought, and it's not going to be very popular... We are all built

differently and rules are always broken on this planet. Is it possible

that this diet is not the answer for him?

I do know a family who has a child who does his best on SCD but with

rice. That approach is not promoted at pecan bread but as I said

before... we are all different and there *are* exceptions to the rule.

My most definite thought is that you should not settle for accepting

such horrendous health conditions for your child. Weight loss is not

acceptable at all (except in very certain circumstances). Sunken eyes

are urgent. Do what you have to, to get him good and strong. I know

you don't know me, but you have my support all the way regardless of the

direction you take.

((((((hugs))))))

KimS nov 2002 celiac family

>

>Subject: I caved in at day 5 because my son was so weak....help!

>

>

>

>I have a six year old son with PDD-NOS.

>Melinda

>

>

[Guest guest]

Hi Melinda,

> when I am trying to implement this diet. His eyes and face are

> sunken and he is visibly thinner than he was on Monday. I have

tried

> to talk to other parents, but no one so far has seen this type of

> reaction and had a kid so rigid that he won't accept the legal

> foods. Has anyone done this gradually? Any suggestions would be

> most appreciated!

Two ideas:

1.) Instead of starting with intro how about moving ahead to more

variety including the broccoli and meats etc. that are SCD legal

that he is eating. Epsom salt baths and/or activated charcoal may

help with the die-off (lethargy, vomiting etc) that he is

experiencing.

or

2.) What about introducing SCD legal foods and gradually cut out the

illegals until you are eventually 100% legal.

Sheila 46 mos SCD, 20 yrs UC

mom of SCD 31 mos

[Guest guest]

> I don't have experience like yours and so I'm not claiming to have an

> answer. > I do know a family who has a child who does his best on SCD but

with

> rice.

Sorry, I am about to get a bit defensive

Rice?....they are not doing SCD then.

I am firm on this as SCD is trade marked and if someone is adding their own

protocols that are in opposition to those of the diet, they had better rename

what they are doing. It reflects badly on SCD if others try this and there are

consequences. People are entitled to do what they choose but may not call it

SCD. I don't mean to offend you, but it is more than semantics and there can be

consequences .

There are other groups that take elements and foods of several diets and combine

them, but we cannot do that here.

Carol F.

SCD 4yrs,

[Guest guest]

Hi Kim,

> I want to mention that I know a woman who's daughter could not

tolerate

> any form of meat at all. She was not SCD but would vomit anytime

she

> ate meat. This girl inately put herself on a vegetarian diet at a

very

> young age. The parents were very worried and still tried to get

her to

> eat meat 'for health reasons'.

Some people have trouble with arachidocic acid in red meat. From

the other SCD lists a suggestion to marinate the meat for 24 hours

in olive oil helps (pulls out the acid).

Sheila

[Guest guest]

Two ideas:

> 1.) Instead of starting with intro how about moving ahead to more

> variety including the broccoli and meats etc. that are SCD legal

> that he is eating. Epsom salt baths and/or activated charcoal may

> help with the die-off (lethargy, vomiting etc) that he is

> experiencing.

> or

> 2.) What about introducing SCD legal foods and gradually cut out

the illegals until you are eventually 100% legal.

Melinda -

This is exactly what we did... first we were GFCF + free of: corn,

soy, potatoes, white rice, yeast, sugar. The only grains my son had

were: quina, buckwheat and brown rice.

Then, we went SCD stage 4... no grains, but fresh fruit and

vegatables while I experimented with different SCD recipies (like

pancakes... now our mainstay). We were only grain free for a week

or two... as we were committed to going SCD.

Then, we did the start up diet...(3 days of disgusting acid reflux

24/7) 5 days later our son had his first solid poop in his life.

It's been 3 wonderful months now... ups & downs... but mostly ups.

Good luck... and get the yeast and bacteria out!

Sally

[Guest guest]

Excellent bit of knowledge Sheila. Thank you. I will certainly put

that one in my back pocket if I should come across someone who may

need help with that in the future.

KimS

>

> Some people have trouble with arachidocic acid in red meat. From

> the other SCD lists a suggestion to marinate the meat for 24 hours

> in olive oil helps (pulls out the acid).

>

> Sheila

[Guest guest]

Hi Melinda,

How's he doing now?

Sheila 46 mos SCD, 20 yrs UC

mom of SCD 31 mos

[Guest guest]

Hi Melinda,

How's he doing now?

Sheila 46 mos SCD, 20 yrs UC

mom of SCD 31 mos

[Guest guest]

Hi Melinda,

How's he doing now?

Sheila 46 mos SCD, 20 yrs UC

mom of SCD 31 mos