OT -- Mitochondrial disease and SCDiet -- (HBOT)

[Guest guest]

FYI...

The list of conditions for which there is evidence of HBOT effectiveness

includes: traumatic brain injury, strokes of all types, cerebral palsy, autism,

near drowning, near hanging, birth injury, toxic brain injury,

ischemic/anoxic/hypoxic brain injury and encephalopathy, coma, persistent

vegetative state (the apallic state), genetic disorders such as mitochondrial

disease, multiple sclerosis, lyme disease, reflex sympathetic dystrophy (RSD),

acute and chronic tinnitus or hearing loss or vertigo, chronic fatigue,

prevention of brain injury from cardiac surgery, fibromyalgia, sports injuries,

immune system disorders, oral infections and non-healing sockets, chronic brain

decompression illness, and others. http://www.harchhyperbarics.com/

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Bunce wrote:

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)