Mitochondrial disease and SCDiet

[Guest guest]

Dear Patti, or anyone with wisdom,

Could you please give suggestions for TWO of our concerns about Kiki our three

year old daughter?? Lots has been revealed since we where last on pecanbread.

Here is her list of conditions: cd/ibd/autism/seizure disorder/pancreatic

insufficiency and mitochondrial disease)

Kiki has been tested for mitochondrial disease. They are trying to figure out

which one she has. www.umdf.org<http://www.umdf.org/>

1) With the way she is eating she is always hungry. Yet is truly ingesting over

3 thousand calories of SCD legal foods a day! They say that she needs more

complex starches to tie her hunger over. Many mito kids have this problem with

high calorie intake. Her worse times are at night....it seems like she has to

eat every three hours around the clock. The SCDiet has helped her so much that

I would be very hesitant to stray. We have been eating this way since 2/06,

with remarkable success in all areas! Elaine said a minimum of two years for

CD. But what should we do??? She has yet to sleep through the night because of

this. They feel that she is not gaining weight because of the mito condition

and because of diet. I do not know who to believe. We have spoken to Mimi and

many SCD pros and are doing all the high calorie SCD tricks. She is not on a

" low carb " diet in any way. She is also on prescription pancreatic enzymes,

because the mito is in her pancreas and she has true pancreatic insufficiency.

2) Her last 24 hour EEG showed only partial seizures. Yet..they still want to

put her on Keppra a anticonvulsant. WE are hesitant about this too. I know

that Patti had her girl on the Ketogenic diet....but says that SCD has worked

far better. Is there anything that we need to be doing with SCD to make the

partial seizures vanish. They are in her temporal lobes...and are affecting her

speech development.

Her biopsy showed that her intestines have healed completely, with minimal

remaining inflammation. Her CDSA showed now problems with gut flora. Her

latest diagnosis was PDD...and not autism! So she has improved immensely!

What are we to do though? To the best of my knowledge there are very few if any

mito kids eating SCDiet.

Thanks to all for suggestions, feel free to go off serve if topic is not SCD

related.

Antoinette and (SCD 2/06)

[Guest guest]

Hi Antoinette,

<<Could you please give suggestions for TWO of our concerns about

Kiki our three year old daughter?? Lots has been revealed since we

where last on pecanbread. Here is her list of conditions:

cd/ibd/autism/seizure disorder/pancreatic insufficiency and

mitochondrial disease) >>

> 1) With the way she is eating she is always hungry. Yet is truly

ingesting over 3 thousand calories of SCD legal foods a day! They

say that she needs more complex starches to tie her hunger over.

Many mito kids have this problem with high calorie intake. Her

worse times are at night....it seems like she has to eat every three

hours around the clock. >>

Is she able to eat some of the more complex food items like beans,

lentils etc. that have some legal complex carbs? If yes would

these help her at night? What foods is she eating at night? Do

any types of food stave off the hunger better?

I will give you some info offlist.

Sheila, SCD Feb. 2001, UC 23 yrs

mom of &

[Guest guest]

Hi Sheila,

Now that she is on more powerful prescription enzymes we are

experimenting with the beans again. She was never able to tolerate

them before. She was eating mostly just meats, cheese, vegetables

and fruits. She never ate the yogurt well...but we taught her to take

it like medicine. She was never even able to tolerate the nuts

flours. With the enzymes we are now seeing that she has a

willingness to eat more things.

We will have to see if beans do the trick. Maybe she will eat more

SCD baked goods too. She is truly eating every two to three hours...I

am use to it...but it does get old. NOTHING keeps the hunger away.

I would like to have a normal life again. It can't be fun for her

either. HER EGD and biopsy showed that her intestines had finnaly

healed. She has gotten so much better with SCD...I should not be

down...but count our blessings. She is doing so much better than

anybody could imagine. SCD truly has worked for us.

I have yet to start the Keppra....anti-convulsant...I do not trust it

for some reason. She has not had a seizure for months....I pray that

they are gone...but don't know if she is still having partial ones.

It is for the partial ones that they want her on meds. The side

affects are not good...eventhough this med is one of the best for not

causing side affects I do not like it still! But do not want to be

stupid either.

Prior to SCD she had 2 to 3 siezures a night...so we have improved

MUCH! It is hard to give into this solution for her problem when I

know that her gut was causing her seizures! Elaine described them

the best when she described her daughter's. So..even though the

doctors do not want to admit that this is the casue...I know better.

HOW long did Elaine say to wait untill one strays from SCD a bit???

They have threatened IV nutrition at night. WE have ben eating

restricted for over two years. I would rather stray...and see if she

is ok....than do this. BUT I do not take this lightley! I wish

Elaine was here to ask! We are not new to this healing process.

I wrote Patti like you suggested. I await her reply.

I welcome you to talk off serve if you need to.

Thanks, the " fanatical " SCDer Antoinette

(mom to Kiki3 healing from mito,cd,ibd,seizures,autism/Fanatical SCD

since 2/06 prior to this, she was paleo for over a year.)

[Guest guest]

Hi Antoinette,

<< She never ate the yogurt well>>

Have you tried dripped yogurt? It is more calorie dense then regular

yogurt, it is also less tart and maybe more palatble for her.

<<HOW long did Elaine say to wait untill one strays from SCD a bit???

>>

At least one year past the disappearance of the last symptom.

<<They have threatened IV nutrition at night. >>

What is their reasoning for the IV nutrit at night?

<< WE have ben eating

> restricted for over two years. I would rather stray...and see if

she

> is ok....than do this. BUT I do not take this lightley!>>

I'd think you'd be better off trying advanced SCD rather than

illegals at this point given how ill Kiki has been.

Sheila, SCD Feb. 2001, UC 23 yrs

mom of and

[Guest guest]

Hi Sheila,

She is loosing weight again....but is doing better than she ever has with her

autism and seizures. SCDiet is helping so much. It is not SCD...it is the

mitochondrial disease. www.umdf.org<http://www.umdf.org/> If you do not know

about this condition that can cause " atypical " autism in some kids and affect

any part of the body. The mitochondria is a tiny organelle which works as the

power house of every cell in the body. People with mito disease can have this

anywhere in there body. For our daughter it is her muscles, intestines,

pancreases and her brain. They often call it Mitochondrial Myopathy. We

await testing results, to see which one of forty it is.

The mitochondrial association (with back up from mito doctors) justifies feeding

a child " corn starch pudding " to tie them over at night. I cringe at the

thought of this! Her gut disbiosis was totally out of whack. I can't imagine

feeding it corn starch. Yikes. She came to SCD so carbohydrate intolerant.

This seems to be gone now. She can tolerate the honey and higher carb SCD foods

no with no ill affect (as long as she is taking her prescription enzymes).

Many mito kids end up on IV nutrition to supplement their diets when their

intestines " shut down " . This " shut down " is at a cellular level. She may be

candidate because she can not digest right when her intestines shut down...her

high calorie intake keeps her awake.... she is waking up 3 to 4 times at night

HUNGRY. Nasty problem. I truly do not trust this corn starch idea!!!! After

knowing what I know about the gut and SCD!!

Mitochondrial disease works like this. SCD helped her to heal her CD and

IBD...it helped her to gain...and to grow....it has helped tremendously with her

autism and seizures. But when the mitochondrial disease kicks in (it is not

always as bad/waxes and wanes with stress, viral infections and unknown causes),

she can not digest or absorb her food like the rest of us. At a cellular

level....her intestine shut down........therefore she looses weight or has slow

gaining......and then when it eases up...she gains again....frustrating. They

claim there is NO CURE...just supportive care. I am not giving up hope...nobody

has ever tried SCD with mito before.

www.fitday.com<http://www.fitday.com/> shows that she has to consume 3400

calories a day....to survive during flares. And because her intestines are not

working right (due to mitochondria not working right)...she is not gaining

weight again. Her EGD and biopsy showed that the CD and IBD is gone......just

mild inflammation....it is the mitochondria in the cells of the intestines that

are not working properly...there for the gut does not function

right....eventhough the diseased tissues are healed by SCDiet. I Hope that this

makes since...in other words....the malfunction is at a cellular level.

She eats the yogurt but does not like it because of sensory issues. We use to

have to drip it, and she could only tolerate the goat yogurt. But now she can

tolerate the half and half. It isn't because it is making her sick. She simply

does not like the texture of it with a spoon....we have taught her to eat it

though. Often hiding it in fruit smoothies, so that she can drink it instead.

I hope that this makes more since now. She likes the acidophilus capsules...and

eats them easily. We give her four a day of the Lyosan.

I hope this made since...forgive me if I rambled. I am learning too about mito.

Antoinette (mom to Kiki-3 healed from CD,ibd, and healing from autism, seizures

and mitochondrial disease)

[Guest guest]

My Doctor is suspecting my daughter has mitochondrial disease after

a blood test showed high level of lactic acid, unless this is

genetic, this could be a sign of mercury toxicity, have you had your

daughter tested for mercury? did you do cheletion therapy?

I don't know all the information yet but I would like to share this

quote from the book " Children with Starving Brains " by Jaquelyn

McCandless, MD. Dr. Sudhir Gupta at the Fall 2001 DAN! conference

said: " Thimerosal is a mitochondrial poison and Autism is a disorder

of mitochondria "

my daughter has Global Development Delay and low muscle tone, she

had bowel problems that improved after 7 months SCD however not

normal yet, maybe mitochondrial disease can explain this. Hair

element test test showed high mercury as well as Antimony and

Arsenic.

I hope after 7 months SCD she can tolerate chelation, I believe that

even if Mitochondrial problems are genetic, chelation might help.

Mother of Rona, 2 1/2 years, GDD, 7months SCD

[Guest guest]

Elevated lactate is often from a poor blood draw as well -- hopefully that's the

case with your child. Or there are other metabolic disorders to be considered

with elevated lactate. Make sure a metabolic specialist is making this

diagnosis & not a DAN doctor! Did you see the blurb I posted yesterday about

HBOT also being used to treat mito disease (genetic)?

-

nassal00 wrote:

My Doctor is suspecting my daughter has mitochondrial disease after

a blood test showed high level of lactic acid, unless this is

genetic, this could be a sign of mercury toxicity, have you had your

daughter tested for mercury? did you do cheletion therapy?

I don't know all the information yet but I would like to share this

quote from the book " Children with Starving Brains " by Jaquelyn

McCandless, MD. Dr. Sudhir Gupta at the Fall 2001 DAN! conference

said: " Thimerosal is a mitochondrial poison and Autism is a disorder

of mitochondria "

my daughter has Global Development Delay and low muscle tone, she

had bowel problems that improved after 7 months SCD however not

normal yet, maybe mitochondrial disease can explain this. Hair

element test test showed high mercury as well as Antimony and

Arsenic.

I hope after 7 months SCD she can tolerate chelation, I believe that

even if Mitochondrial problems are genetic, chelation might help.

Mother of Rona, 2 1/2 years, GDD, 7months SCD

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