Re: My special needs son

March 26, 2006

Please stay and join us heal your son. I am sure SCD can help him. Jenn &

Kali 10 months SCD

My special needs son

> I am the mom of a severely brain injured little boy who is now 8 years

> old. He has epilepsy (5 different types of seizures), cortical

> blindness, spastic quad CP, reflux with high risk for aspiration

> pneumonia, feeding tube, etc...

>

> He has been on the ketogenic diet for 4 years (he was weaned from it 3

> years ago)and has been tried and failed on all available seizure

> medications. He has 30-150 seizures a day.

>

> I finally got the help of our neurologist and dietician to work with

> me to give him some real food pureed through his tube. He is still on

> some formula. It is called Neocate Junior.

>

> I am interested in getting him on the SCD but wondering if there is

> anyone else here that has a child with similar issues?

>

> Thanks so much for any help or comments that you could share.

> Sincerely, Tammy

>

> 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

> and

> http://www.pecanbread.com

>

March 26, 2006

Tammy,

While my son does not have the same medical conditions as your

son, he was on 100% neocate (via bottle) when we began the

transition to SCD. It was very scary. We were taking away the very

nutrition that saved his life. Neocate is made of corn syrup solids

and constributed to severe bacterial and fungal overgrowth for my

son.

Maybe try giving pureed foods and neocate for a while to see if he

tolerates the food? I wonder if giving digestive enzymes with the

pureed food would help aid digestion.

Welcome!

a

>

> I am the mom of a severely brain injured little boy who is now 8

years

> old. He has epilepsy (5 different types of seizures), cortical

> blindness, spastic quad CP, reflux with high risk for aspiration

> pneumonia, feeding tube, etc...

>

> He has been on the ketogenic diet for 4 years (he was weaned from

it 3

> years ago)and has been tried and failed on all available seizure

> medications. He has 30-150 seizures a day.

>

> I finally got the help of our neurologist and dietician to work

with

> me to give him some real food pureed through his tube. He is still

on

> some formula. It is called Neocate Junior.

>

> I am interested in getting him on the SCD but wondering if there

is

> anyone else here that has a child with similar issues?

>

> Thanks so much for any help or comments that you could share.

> Sincerely, Tammy

>

March 26, 2006

Welcome! I also have a child with a brain injury, with many of the

same issues you listed and also on neocate Jr. However, he won't be

joining us on SCD until after cardiac surgery this May. I will be

thinking of you as you start. And anticipating good things for your

son. The neocate is so vital to saving their life at one point, but

seems to undermine their health in the long run (I can't imagine a

nutritionist being pleased that I was feeding my 2 year old a diet of

52% corn syrup solids! Unless they are tube fed then they tell you

that's the best thing! ARGH!). Good for you, finding a doctor and a

nutritionist to work with you! My wishes are with you. If you

haven't checked out mealtimenotions.com yet, they are coming out with

a new book on tube feeding a homemade diet. Its currently late, but

should be good. Marsha Dunn Klein is one of THE experts with tube

feeding. Her conference " Tube-feeding with Love " is excellent and

has a lot of info about tube feeding a homemade diet. So far we are

just supplementing organic baby foods through my sons tube (not SCD

legal.) Someone had mentioned using enzymes with the food and we do

that too. It has really helped his digestion. Just a another

thought, we had a naturopath mention that we should rotate foods with

him, because of the severity of leaky gut, as well as use pure

organic foods if possible, so we could tell exactly what his

intolerances were to (the food, not the pesticide). SCD DOES NOT

require this, and I don't want to overwhelm you but it may be just

something to consider at some point. I am anticipating a rotation

diet being easier since our son doesn't really care what goes in the

tube. My best wishes and I hope to be asking you questions come

June! :-)

Colby

celiac, DD, DH, self, SCD 3 weeks, 1 day

March 27, 2006

Dear Tammy,

Your situation warmed my heart. What a mother you must be to want to try and

find solution for his situation. Although not in the same boat, our daughter

KiKi (22 months old) and although never professionally " labeled " due to young

age...are certain she was going down the path to being diagnosed with autism

spectrum disorder (ASD)...just 14 days ago use to have " delirium like

spells " /seizure like episodes....sometimes up to three or four a night......they

have all vanished on this diet. Nothing worked before. We saw results rather

fast, she started talking for the first time within the first week (never said a

word before). Not everybody is like this though....matter on individual

circumstances. We are dairy free (with exception of trying just two teaspoons

of SCD goat yogurt a day....it seems to be working for us. Go for it, but with

the support of this list and counselors! Look forward to seeing you on the

list. These people are so helpful! Remember that they also have individual

counseling for difficult cases. They are a God send....that and the BTVC books

and all that Elaine learned and others with so much experience can share with

us!

God Bless You and keep you, I know it is hard having special needs kids....we

have three! ....and admit I may be a little " special " needs myself...although

obviously high functioning (BA with honors in Psychology). But are doing much

better these days...no thanks to " traditional medicine " and all their pills and

surgery solutions! With God and SCDiet we are making it. Warm Regards and a

BIG Welcome!

Antoinette mother( Celiac Disease " CD " , ASD, Mental Illness, Multiple

sensitivities and allergies, rage attacks, chronic fatigue, chronic pain),

osteomalacia/osteopenia (a sign of adult rickets, and malabsorption).

hubby( CD, ADD, osteopenia (a sign of malabsorption), rage attacks)

four years old (CD, Dermatitis Herpetiformis " DH " , ADHD/mild ASD, Speech

Delays, Sensory Integration problems, Multiple sensitivities and

allergies/dairy, all grain and soy), bone pain, tantrums, rage attackes and

bully behavior.

KiKi 22 month old (CD, DH, ASD, Delirium Seizures, Multiple sensitivities (soy.

dairy, all grain/ gluten), GERD " reflux " , Many Delays (Sensory Integration

Problems, low muscle tone, speech, cognitive), Aloof and shy behavior.

Bubbles 17 month old (MILD Hyperekplexia/Cerebral Palsy, allergy and intolerance

to dairy, soy and gluten)

List of problems that are already vanishing or vanished, now on day 35: speech

delays, delirium seizures, being able to sit still and focus, night terrors,

rage attacks, tantrums, bully behavior, Shy behavior, GERD, diarrhea,

constipation, skin rashes, sleep problems, chronic fatigue, chronic pain,

depression, no more Nose bleeds or easy bruising either, bone pain

gone.........doing so much better...can't wait to see what we are like a few

years on SCD! YEAH!

Hope this gives you some HOPE...so many wonderful testimonies......

We are all doing BETTER in countless ways!

My special needs son

> I am the mom of a severely brain injured little boy who is now 8 years

> old. He has epilepsy (5 different types of seizures), cortical

> blindness, spastic quad CP, reflux with high risk for aspiration

> pneumonia, feeding tube, etc...

>

> He has been on the ketogenic diet for 4 years (he was weaned from it 3

> years ago)and has been tried and failed on all available seizure

> medications. He has 30-150 seizures a day.

>

> I finally got the help of our neurologist and dietician to work with

> me to give him some real food pureed through his tube. He is still on

> some formula. It is called Neocate Junior.

>

> I am interested in getting him on the SCD but wondering if there is

> anyone else here that has a child with similar issues?

>

> Thanks so much for any help or comments that you could share.

> Sincerely, Tammy

>

> 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/>

>

March 27, 2006

I forgot to mention - and you may already know but - Vita-mix which is

the blender that Marsha Dunn Klein recommends to grind your own food

fine enough for the tube - offers a discount to tube feeding families.

Sorry for the bad syntax, hope it made sense.

Colby

March 27, 2006

Hi Tammy,

Look for Wills Langford on the web. He does free phone consults with moms

of special needs kids. Ask him about Vitamin B6 and related nutrients as

anticonvulsants! I think there's also info in Shaw's book " Biological

Treatments for Autism and PDD " .

Also, read about excitotoxins ( Blaylock, neurosurgeon -- articles

on web and book " Excitotoxins: The Taste That Kills " ) and be sure your son's

formula doesn't contain excitotoxins. They could be contributing to or

causing the seizures.

Has your son had cranial-sacral manipulation by a really good, well trained

osteopath? This might help with the reflux. Also helps with seizures, for

some kids! The trick is finding a really good osteopath to work with. I

know people to recommend in Oregon, California, and Ohio. There are

non-osteopaths who do good cranial-sacral work, too, but check credentials

and experience carefully and ask for references of parents with kids similar

to yours!

Another approach to reflux and swallowing/choking issues is " head

patterns " . This is something you would do yourself, at home, but you need

someone to teach you how. Extremely few people know how to do these! I'm

one, and I know of one or two people in Oregon. But if you find a

cranial-sacral person, I could mail you instructions for head patterns, and

you could take the instructions to that person. They would understand the

instructions and could help you learn how to do the head patterns. Basic

info: By moving the head carefully and gently in very specific, exact ways

(that are perfectly safe when done right), you stimulate the muscles of the

throat and over time this can improve vagus nerve function. Takes a max of

perhaps 10 minutes per day. I have seen head patterns stop reflux

completely, improve swallowing, eliminate choking while eating/drinking --

in kids and adults with moderate to severe brain injuries. Let me know if

you want to pursue this. But the first step would be cranial-sacral work,

because if the vagus nerve is under pressure from a cranial problem, head

patterns won't work.

There's also a simple, do-it-yourself technique that improves breathing and

reduces pneumonia risk for severely brain-injured children...I could teach

you this or refer you to someone who could teach you, if you're interested.

But one thing at a time...best to work on the eating issues first, I think;

get life a little easier and then consider work on breathing.

I've worked with lots of severely brain-injured kids and their parents, and

I know you've got a tough job, caring for your little guy. I hope this info

is helpful. And by the way, I think SCD is a great idea for your son.

Best wishes,

Kayla

March 27, 2006

I am interested in learning about the head pattern movements. Please email

me jlessard@...

RE: My special needs son

> Hi Tammy,

> Look for Wills Langford on the web. He does free phone consults with moms

> of special needs kids. Ask him about Vitamin B6 and related nutrients as

> anticonvulsants! I think there's also info in Shaw's book " Biological

> Treatments for Autism and PDD " .

> Also, read about excitotoxins ( Blaylock, neurosurgeon -- articles

> on web and book " Excitotoxins: The Taste That Kills " ) and be sure your

son's

> formula doesn't contain excitotoxins. They could be contributing to or

> causing the seizures.

> Has your son had cranial-sacral manipulation by a really good, well

trained

> osteopath? This might help with the reflux. Also helps with seizures,

for

> some kids! The trick is finding a really good osteopath to work with. I

> know people to recommend in Oregon, California, and Ohio. There are

> non-osteopaths who do good cranial-sacral work, too, but check credentials

> and experience carefully and ask for references of parents with kids

similar

> to yours!

> Another approach to reflux and swallowing/choking issues is " head

> patterns " . This is something you would do yourself, at home, but you need

> someone to teach you how. Extremely few people know how to do these! I'm

> one, and I know of one or two people in Oregon. But if you find a

> cranial-sacral person, I could mail you instructions for head patterns,

and

> you could take the instructions to that person. They would understand the

> instructions and could help you learn how to do the head patterns. Basic

> info: By moving the head carefully and gently in very specific, exact

ways

> (that are perfectly safe when done right), you stimulate the muscles of

the

> throat and over time this can improve vagus nerve function. Takes a max

of

> perhaps 10 minutes per day. I have seen head patterns stop reflux

> completely, improve swallowing, eliminate choking while eating/drinking --

> in kids and adults with moderate to severe brain injuries. Let me know if

> you want to pursue this. But the first step would be cranial-sacral work,

> because if the vagus nerve is under pressure from a cranial problem, head

> patterns won't work.

> There's also a simple, do-it-yourself technique that improves breathing

and

> reduces pneumonia risk for severely brain-injured children...I could teach

> you this or refer you to someone who could teach you, if you're

interested.

> But one thing at a time...best to work on the eating issues first, I

think;

> get life a little easier and then consider work on breathing.

> I've worked with lots of severely brain-injured kids and their parents,

and

> I know you've got a tough job, caring for your little guy. I hope this

info

> is helpful. And by the way, I think SCD is a great idea for your son.

> Best wishes,

> Kayla

>

> 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

> and

> http://www.pecanbread.com

>

March 27, 2006

Hi Tammy and Kayla,

Have you ever heard of neurocranial restructuring?

It is more poweful than cranial sacral... may be helpful for your kids.

It made a significant, positive difference for my son.

www.neurocranialrestructuring.com .

It would be important to find an experienced practioner.

Agape,

Wildman wrote:

Hi Tammy,

Look for Wills Langford on the web. He does free phone consults with moms

of special needs kids. Ask him about Vitamin B6 and related nutrients as

anticonvulsants! I think there's also info in Shaw's book " Biological

Treatments for Autism and PDD " .

Also, read about excitotoxins ( Blaylock, neurosurgeon -- articles

on web and book " Excitotoxins: The Taste That Kills " ) and be sure your son's

formula doesn't contain excitotoxins. They could be contributing to or

causing the seizures.

Has your son had cranial-sacral manipulation by a really good, well