beginner of SCD

[Guest guest]

Hi every body:

My name is and I'm a mother of a boy os 9 years old.

I have seven days with the diet but I'm really scare about because the

problem of my son is severe, and I really aprecciate if some of you can

help me to introduce him to this new diet.

Im from México and my english is bad, but I'll try to do my best

effort.

I'm going to related in a short way my son's case.

when he was born suffered hypoxia, at six months was diagnosed with a

syndrome of Hypomelanosis of Ito, and during a Tomography he suffered a

respiratory break (I dont know the correct word- but he stop to breath

for a few minutes). He had a severe brain injury. We began with therapys

(he was a patient of the Glenn Doman from Philadelfia USA during 6

years.) During the first 3 years old he was medicated with a lot

antibiotics because of respiratory problems. of course he began to

suffer many intestinal problems, and since 3 years ago the symphtoms are

terribles. he can't eat many thinks, every time we should restrict a new

food because and he had just a short list of foods permited. before to

bigin with the SCD we were with the Gluten and caseine free.

Im really worry and desesperate because this problem has caused other

like the increase of seizures, lack of energy (he was a very active

boy)he sleeps a lot during the day, stomach pain, lack of awareness and

many neurological problems.

actually he has annormal evacuation, some times has diarrea, some times

constipations.

During the last 3 days of the SCD he has been sleeping all the morning,

his fecal e. are fetid, pasty.

he is eating pear and a little honey (monosacaridos). Vegetableas and

mean, poultry and fish. please if somebody wants to help me, I really

appreciate.

[Guest guest]

Hi ,

I am so glad that you discovered SCD! Please be patient during the

first week on SCD;things might get worse before they get better.

I know that your son will get better soon! This diet will help him

tremendously. The SCD helps children with seizures and GI problems.

For SCD pals:

grammy_bauer@...

Yo soy segura que su hijo va mejorar pronto! Esa dieta va ayudar lo

mucho. SCD es una dieta que ayuda mucho a los ninos con epilepsia y

problemos de digestion.

Para tener una amiga ques puede ayudar contacte esa abuelita:

grammy_bauer@...

Mimi

(please excuse any Spanish mistakes,I never heard any Spanish till

the age of 12)

We have a website in Spanish:

http://www.pecanbread.com/pandenuez/reaccion.html

Reacciones Adversas al Inicio de la Dieta SCD

Elaine comenta: " No hay manera de juzgar si la dieta será

provechosa durante los primeros días. Algunos niños mejoran incluso

durante la primera semana, pero muchos tendrán que pasar por un

periodo de ajuste y de lo que algunos llaman " detoxificación " . Por

favor recuerda que esta dieta está realizando CAMBIOS MUY

IMPORTANTES en el intestino. Está afectando y reajustando toda la

población intestinal de levaduras y bacteria mucho más allá de lo

que se tiene conocimiento. Sin embargo los resultados han sido

excelentes y de ésto se trata, de resultados.

" Durante la primera semana o algo así, sucede muy a menudo que la

situación empeore. Lo que asusta a muchos padres es que el color de

las evacuaciones puede cambiar a tonos muy extraños de amarillo y

verde. Este cambio de color es en realidad un signo positivo,

significa que el metabolismo de las bacterias está CAMBIANDO. Este

cambio está afectando la bilis y por lo tanto se refleja en el color

de las evacuaciones. "

Estas primeras reacciones a la dieta pueden ser un deterioro en la

conducta, sintomas intestinales y cambios de temperamento. Algunos

niños sufren de inflamación en el vientre (se les hincha la

barriga). También puede haber un incremento en autoestimulaciones,

hiperactividad o agresiones. Esto es una indicación que la dieta

está comenzando a dar resultados y que hay una reacción a causa de

la muerte de las bacterias y por un aumento temporal de los desechos

que producen. Esto en inglés se conoce comunmente como " die-off " .

[Guest guest]

Dear ,

Your post just touched my heart. Like so many that arrive to Pecan Bread you

and your son are true survivors! Welcome to Hope!

We are four months out and just like Mimi suggested, patience is a must. It

took time to get sick, and it takes time to heal. We are certain that we are on

the right track though. We are a family of five who now eat SCD due to celiac

disease, our daughter was just confirmed with autism, son adhd and other

daughter had health problems since birth also. We are all doing better. Yet,

we have had our set backs. We are pretty certain that we are SCD keepers. Hang

in there and stick to those who can support your quest for health. Grammy B is

wonderful at bringing those in your area close to you. She has helped us in this

way. Hope SCD helps your son too!

Antoinette family of five SCD 2/06

celiac, add, adhd, autism, hyperkplexia

Re: beginner of SCD

Hi ,

I am so glad that you discovered SCD! Please be patient during the

first week on SCD;things might get worse before they get better.

I know that your son will get better soon! This diet will help him

tremendously. The SCD helps children with seizures and GI problems.

For SCD pals:

grammy_bauer@...

Yo soy segura que su hijo va mejorar pronto! Esa dieta va ayudar lo

mucho. SCD es una dieta que ayuda mucho a los ninos con epilepsia y

problemos de digestion.

Para tener una amiga ques puede ayudar contacte esa abuelita:

grammy_bauer@...

Mimi

(please excuse any Spanish mistakes,I never heard any Spanish till

the age of 12)

We have a website in Spanish:

http://www.pecanbread.com/pandenuez/reaccion.html<http://www.pecanbread.com/pand\

enuez/reaccion.html>

Reacciones Adversas al Inicio de la Dieta SCD

Elaine comenta: " No hay manera de juzgar si la dieta será

provechosa durante los primeros días. Algunos niños mejoran incluso

durante la primera semana, pero muchos tendrán que pasar por un

periodo de ajuste y de lo que algunos llaman " detoxificación " . Por

favor recuerda que esta dieta está realizando CAMBIOS MUY

IMPORTANTES en el intestino. Está afectando y reajustando toda la

población intestinal de levaduras y bacteria mucho más allá de lo

que se tiene conocimiento. Sin embargo los resultados han sido

excelentes y de ésto se trata, de resultados.

" Durante la primera semana o algo así, sucede muy a menudo que la

situación empeore. Lo que asusta a muchos padres es que el color de

las evacuaciones puede cambiar a tonos muy extraños de amarillo y

verde. Este cambio de color es en realidad un signo positivo,

significa que el metabolismo de las bacterias está CAMBIANDO. Este

cambio está afectando la bilis y por lo tanto se refleja en el color

de las evacuaciones. "

Estas primeras reacciones a la dieta pueden ser un deterioro en la

conducta, sintomas intestinales y cambios de temperamento. Algunos

niños sufren de inflamación en el vientre (se les hincha la

barriga). También puede haber un incremento en autoestimulaciones,

hiperactividad o agresiones. Esto es una indicación que la dieta

está comenzando a dar resultados y que hay una reacción a causa de

la muerte de las bacterias y por un aumento temporal de los desechos

que producen. Esto en inglés se conoce comunmente como " die-off " .

For information on the Specific Carbohydrate Diet, please read the book

_Breaking the Vicious Cycle_ by Elaine Gottschall and read the following

websites:

http://www.breakingtheviciouscycle.info<http://www.breakingtheviciouscycle.info/\

>

and

http://www.pecanbread.com<http://www.pecanbread.com/>

[Guest guest]

Hi, .

Welcome to the list!

I wanted to share some of our story with you to give some encouragement.

SCD has been very transformational in our lives, but especially for our son,

Dakota (8).

Dakota has two genetic disorders--one causes multiple tumors, seizures,

developmental delays, and autism among other things and the other involves

the kidneys. Dakota's seizures were so varied and frequent that he was

originally diagnosed with Lennox-Gastaut Syndrome (severe and multiple

seizure patterns). Dakota has severe apraxia and articulation errors. He

was chronically ill, suffered from horrible constipation from birth, and was

very lethargic. Yet, he also had severe aggression and rage.

We did multiple diets prior to SCD. Yet we still lived in a very uncertain

and gray world. We spent a good portion of our time reacting--to the

illnesses, to the rage, to the seizures, to the inability to communicate, to

the delays.......

Since SCD, we have seen dramatic changes, but it has been a slow road and

not always easy road. However, our path is so much clearer than before.

Dakota made gains and although they have plateaued now, he is no longer

regressing. His seizures have greatly subsided (only a few drop attacks and

grand mals a year and few myoclonic jerks--but still twenty or so absent,

complex partial, and simple partial seizures a day.) However, he no longer

is considered having Lennox Gastaut due to the frequency and duration of his

seizure patterns.

Dakota's energy has greatly expanded. Dakota's behavior has greatly

improved. Dakota's intelligible speech production is still only 2% for many

sounds, but it is not regressing and his skills have improved to where he

can use a more sophisticated communication device that is beyond cool! :-)

His world has expanded, as has ours, and he is a happy, brilliant little boy

full of life.

For those with severe, chronic health impairments, the waters can be so

murky. But, since starting SCD, we now can tell that his face is red

because of seizures rather than diet (before it was both). Now he can run a

temperature to let us know when he is sick (which has been rare), rather

than seizing nonstop. He can communicate his needs rather than screaming

them. Long naps and great withdrawl are a thing of the past. He has grown

3 inches and gained 8 pounds in two years and is now in the 20% of his

height range and and 10% for his weight! He is responding to therapies

rather than fighting them.

So, for us SCD has given us our son---so if the tumors or the seizures or

blood pressure get the best of him, we have had two years of mostly joy.

And, I truly am grateful for that!

Best of luck to you, your son, and family. All of you will be in our

prayers.

whole family SCD 2 years

Mom to Dakota (NF with tumors, BWS, Child Disintegrative Disorder, and

seizures) and (6--happy, healthy, supportive little brother)

[Guest guest]

Hi

Thank you very much for your words. I ask you sorry for my bad english but

belive me Im doing my best effort, my native lenguage is spanish.

Your history really makes me feel full of hope. Every story is painful but is

great to see the courage of parents to do every thing looking for “life quality”

for our children.

My history is as long as every one, with great and bad things.

(my younger son) suffered hypoxia on birth, at six months old was

detected him the Hypomelanosis of Ito syndrome, and during a Tomography with

anesthesia he had a Breath Attack for a few minutes. My son stay like a

“vegetable”, stop to smile, he lost many vital reflex, he stayed with a severe

brain injury.

During the first week after his birth he get an hospital infection and since

those days he began to take a lot of antibiotics until 3 years that I stop with

them because he had a big damage on his stomach. The diarrheas were continuous.

He got better when I stop with too much medicine. At the beginning He could eat

every thing, but at 6 years old he began to be lethargic and ill and the

diarrheas were more frequently the first constipation appeared, since this fact

every thing turns bad, between constipation and diarrhea, semi-occlusion (it

required hospital), colic, weakness, he began to sleep every days after take his

breakfast for many hours, low awareness, autistic behavior and frequently

seizures with different pattern, intensity and duration.

Between the 3 and 6 years old he was a full energy boy, he was since 2 until 7

in the Philadelphia Program (The Institutes for the Achievement of human

potential) in the intensive program, he could recover his vital reflexes, to

creep 1600mts, to crawl 400, to walk 5 km every days Sunday to Saturday. With

this intestinal problem he stopped every physical activity and we had to abandon

the program.

2 years ago we began with the GFCF and he gets better, the seizures dismissed

in frequently, duration, pattern changed and intensity too. His awareness

improved a lot but the intestinal problems continuing. 2 month ago he began with

abnormal feces again, with many small seizures and other neurological symptoms,

he can’t sleep well.

I’m really worry about because I can see that each time this situation occurs

it is worse.

Ten days ago I found the SCD and I retired rice, potatoes, and grains

permitted in the GFCF. I have noticed some positive changes like his awareness,

and some muscles of his face stopped to “blink”, and he doesn’t have diarrhea

since yesterday, but he has had sleeping a lot, he has had many small seizures,

he is hyperactive in the afternoon, he can’t sleep well.

Some pals of the group recommended me stop the carrots and beets. I pretend

give him during the next five days only chicken, meat, fish, pumpkin, green

beans, asparagus, onion, of fruit just pear.

The last fecal test show no-candida, I made the test in two different labs and

both say the same. Then…What is going wrong? The pediatrician told me yesterday

that the symptom seems to be caused of a chronic inflammatory gut, but we need a

intestinal biopsies to determinate the real cause.

I don’t know if I’m doing the correct but I need check every thing he eats.

I really hope to be in contact with you.

My best and deeply wishes for Dakota, for you and your family.

escribió:

Hi, .

Welcome to the list!

I wanted to share some of our story with you to give some encouragement.

SCD has been very transformational in our lives, but especially for our son,

Dakota (8).>>

<<original post clipped for length by moderator>>

[Guest guest]

Hi, .

Thanks for sharing your story, and your english is excellent!! :-)

I am so glad that you are noticing some positive changes since your removed

the potatoes, rice, and

GFCF grains from your son's diet! Although they may seem like small

things, they really are huge!

I am not sure if you have seen the Food Preparation link for the Pecanbread

website (http://www.pecanbread.com/foodprep.html).

I am not sure if you started SCD with the intro diet. There are tips for

transitioning to SCD and the intro diet at this link. We still do the

" intro " diet one or two days a week depending on seizure activity---this

works for us, but not for everyone. But, some days, I find that we all need

to be a little gentler to our digestive tracts and by allowing one day to

detox with an simple/intro diet, we were able to introduce new foods with

far better tolerance.

The Stages chart at this link really helped our family. We made a

communication board (PECS) with the foods for each stages that Dakota could

tolerate, and this gave him a choice in the foods that he could eat. Some

days it worked; other days, it didn't. But it helped us stay vigilent. We

still have it inside our cupboard door, and on the days that he is not

feeling quite right, he will automatically put a big X over the raw

foods/salads/beens---he now is realizing which foods make him feel better

and the days that he needs mostly soups, fruitsauces, and pureed foods.

Make sure that the fruit and vegetables are peeled and have all seeds

removed and cooked thoroughly. I would avoid onion for a little longer.

Make sure that juice is well diluted. Unless he has reacted poorly to

carrots, I would keep the carrot in 's diet--just make sure that it is

well cooked and peeled.

Good luck, and we will be thinking about you and !

SCD 2 years

Mom to Dakota (8--NF, CDD, Seizures) and

(6--happy and healthy)

[Guest guest]

Dear ,

If you have only begun SCD ten days ago, I believe you will see more

improvement. Just try to be patient. SCD will relieve the inflammation in his

gut. You may not need to do invasive intestinal biopsies... or maybe it could be

postponed a couple of months?

Many children do not feel well in the first weeks on SCD, because of bacterial

" die-off " . This is very common. The bad bacteria give off toxins as they die.

It is important to make all his foods very easy to digest.... continue to peel

and cook all vegetables and fruit. Are you giving the SCD yogurt? If not, at

least, you should give a supplement of acidophilus (with no " illegal "

ingredients added).

I encourage you to continue with SCD... healing takes time.

my best to you and ,

Patti, mom to Katera (age 9, CP, microcephaly, dev. delays, epilepsy, etc.)

Re: beginner of SCD

<< Ten days ago I found the SCD and I retired rice, potatoes, and grains

permitted in the GFCF. I have noticed some positive changes like his awareness,

and some muscles of his face stopped to " blink " , and he doesn't have diarrhea

since yesterday, but he has had sleeping a lot, he has had many small seizures,

he is hyperactive in the afternoon, he can't sleep well.

Some pals of the group recommended me stop the carrots and beets. I pretend

give him during the next five days only chicken, meat, fish, pumpkin, green

beans, asparagus, onion, of fruit just pear.

The last fecal test show no-candida, I made the test in two different labs

and both say the same. Then.What is going wrong? The pediatrician told me

yesterday that the symptom seems to be caused of a chronic inflammatory gut, but

we need a intestinal biopsies to determinate the real cause.

I don't know if I'm doing the correct but I need check every thing he eats.

>>