infantile spasm

July 5, 2003

my 17 month old daughter, maddux, has been diagnosed with infantile

spasm 2 months ago. we tried ACTH with no success and on depakote

sprinkles 2 in morning a one at night still no progress. this was

caused by MMR vaccination. anyone have any suggestins for me. we are

trying accupressure with out homiopathic dic at the end of the month

to redirect her energy. or whatever they do. ill try anything. anyone

experincing this. if not still email with suggestions or stories.

thanks jaime

July 5, 2003

what is this oxygen treatment? can she still be on meds while on the

treatment? thanks for your suggestion. i would love to know more. thanks, jaime

July 5, 2003

hyperbaric oxygen treatment...my suggestion

Kathy

[ ] infantile spasm

> my 17 month old daughter, maddux, has been diagnosed with infantile

> spasm 2 months ago. we tried ACTH with no success and on depakote

> sprinkles 2 in morning a one at night still no progress. this was

> caused by MMR vaccination. anyone have any suggestins for me. we are

> trying accupressure with out homiopathic dic at the end of the month

> to redirect her energy. or whatever they do. ill try anything. anyone

> experincing this. if not still email with suggestions or stories.

> thanks jaime

>

July 7, 2003

You may want to consider vitamin B6. My daughter took 100 mg a day at

17 months old and the seizures stopped within a week. She remained on

B6 and stayed seizure free for a year. We are not sure if she had a

spontanious remission of the infantile spasms or if she responded to

the B6.

(Mallorie's mom)

July 7, 2003

we've been doing B6 for weeks now and nothing. something wil work one day. so

i assume the seizures came back after a year? were they different?

July 8, 2003

Our daughter Derya has been having seizures since two months of age. She is now

19 months. Still seizing 20-60 times a day. We have tried every medicine and

every alternative treatment method out there, nothing worked. Two months ago

she was diagnosed with a MITOCHONDRIAL DISEASE which is genetic. So all along

the doctors were trying to treat the symptoms with the anti convulsants which

made Derya more and more toxicated. Now she is on Coenzyme Q10, L-Carnitine,

Liquid Vitamin E, we have not seen any results yet. There is no known cure for

mitochondrial diseases. In a nut shell, every cell in our body has a

mitochondria which is responsible for turning the food we eat into energy (ATP)

and supply the entire body. When they don't function properly the entire body

is effected and many symptoms shop up, including various typyes of seizures,

weight loss, low or no mucsle tone, reflux, eventually all systems stop

functioning. We are still hopeful for Derya and trying to find the

right diet and supplements to help her. We just wish the doctors were little

bit more knowledgeable about this disease and concentrated on the underlying

issues rather than attacking the symptoms. Mitochondrial disease can only be

detected by a fresh muscle biopsy, and the place to have it done is in Atlanta

at Horizon Molecular Medicine by Dr. Shoffner.

I don't know if this relates to Maddux's case at all but I encourage you to ask

questions and don't be satisfied with " textbook answers " from doctors.

Good luck and best wishes.

Baris

jaimelackey <madduxandme@...> wrote:

my 17 month old daughter, maddux, has been diagnosed with infantile

spasm 2 months ago. we tried ACTH with no success and on depakote

sprinkles 2 in morning a one at night still no progress. this was

caused by MMR vaccination. anyone have any suggestins for me. we are

trying accupressure with out homiopathic dic at the end of the month

to redirect her energy. or whatever they do. ill try anything. anyone

experincing this. if not still email with suggestions or stories.

thanks jaime

July 8, 2003

When they first came back they were the same. As the years have gone

by they have changed to all different types of seizures.

> we've been doing B6 for weeks now and nothing. something wil work

one day. so

> i assume the seizures came back after a year? were they different?

>

July 8, 2003

My two cents on what to add...since I too have a son with mito, specifically

pyruvate dehydrogenese or carboxylase (carbohayrdate system not working)..

Add Ambrotose (contact williss langford, will order for you at

willissl@... and ask also for his seizure E book), N-acetylecystein,

sulfur epsom salt baths, Change diet to low carb, low iron, vegees and

fruits (medittereanean diet), check for LYME, remove all carpets in home,

see if she is mercury poisinined with a hair analysis and also a DMSA dump

with Alpha Lipoic Acid, Add Colustrum or Transfer Factor (Chisolm Labs),

take out all sources of Flouride, fruit juices, toothpaste, municipal water

systems (reverese osmosed water), check for lead poisining, check for iron

disorder (hemachromatosis, thallamesia, anemia), check copper and zinc

levels and Metallothionein (click on Bill Walshes name on Childscreen at

www.childscreen.org ), milk thistle, check for mycoplasmal infection (Garth

Nicholsen), check for purine metabolism problems, check candida problems and

fungal problems, check titres to all childhood vaccines, including EBV and

HHV6a, scmv (Viracor), do most tests from Immunoscience labs at

immunoscience labs in Beverely hills (do word check to find URL). Check for

alpha one antitrypsin deficiency, check TNF and IL-6, ask for birth records,

including timing of cord clamp, check PKU AGAIN, take out all sources of MSG

at www.truthinlabeling.com .

Re: [ ] infantile spasm

> Our daughter Derya has been having seizures since two months of age. She

is now 19 months. Still seizing 20-60 times a day. We have tried every

medicine and every alternative treatment method out there, nothing worked.

Two months ago she was diagnosed with a MITOCHONDRIAL DISEASE which is

genetic. So all along the doctors were trying to treat the symptoms with

the anti convulsants which made Derya more and more toxicated. Now she is

on Coenzyme Q10, L-Carnitine, Liquid Vitamin E, we have not seen any results

yet. There is no known cure for mitochondrial diseases. In a nut shell,

every cell in our body has a mitochondria which is responsible for turning

the food we eat into energy (ATP) and supply the entire body. When they

don't function properly the entire body is effected and many symptoms shop

up, including various typyes of seizures, weight loss, low or no mucsle

tone, reflux, eventually all systems stop functioning. We are still hopeful

for Derya and trying to find the

> right diet and supplements to help her. We just wish the doctors were

little bit more knowledgeable about this disease and concentrated on the

underlying issues rather than attacking the symptoms. Mitochondrial disease

can only be detected by a fresh muscle biopsy, and the place to have it done

is in Atlanta at Horizon Molecular Medicine by Dr. Shoffner.

> I don't know if this relates to Maddux's case at all but I encourage you

to ask questions and don't be satisfied with " textbook answers " from

doctors.

>

> Good luck and best wishes.

>

> Baris

>

> jaimelackey <madduxandme@...> wrote:

> my 17 month old daughter, maddux, has been diagnosed with infantile

> spasm 2 months ago. we tried ACTH with no success and on depakote

> sprinkles 2 in morning a one at night still no progress. this was

> caused by MMR vaccination. anyone have any suggestins for me. we are

> trying accupressure with out homiopathic dic at the end of the month

> to redirect her energy. or whatever they do. ill try anything. anyone

> experincing this. if not still email with suggestions or stories.

> thanks jaime

>

July 8, 2003

thanks baris for writing. what are your child's symptoms. all maddux is doing

now is having seizure. all other things are normal. shes has stopped talking

but as for now she is fine. she has about 50-60 seizures a day. no

improvedment on any meds now. let me know. im leaving town for 2 weeks but i

will check

my email while im out thanks jaime

July 8, 2003

Our son, age 10, started having seizures at age 3 for no known

reason. We tried 6 AED's, Keto diet, VNS implant and multiple alternatives

with minimal positive results and many negative results. In 2000 after

mentioning many times over a 15 month time span to our Neuro about 's

obvious decline in mental state, muscle tone, balance and coordination, he

finally referred us to a Metabolic clinic for consult. This past January

he was diagnosed with a metabolic disease - Glutaric Aciduria Type 2, which

seizures can be a symptom of. This was the first possible reason for his

seizures. Since then we have weaned him off of Depakote completely (he is

now only on Topamax), started Carnitor, B2 and vitamins, and he is doing

much better. He has more energy, talks more and comprehends more then he

has in years. His muscle biopsy was inconclusive, but his diagnosis came

from urine & blood results. I really feel if it wasn't for my constant

research and pounding the doctors for answers as well as asking lots of

questions they didn't have any answers for, we would still be banging our

heads against the wall. It is from groups like this one and a great

metabolic list I belong to that I get new ideas and new treatment options to

try.

I am curious which type of Mito disease Derya has?

Best Wishes to all the mom's and dad's fighting to make a difference in

their kids lives!

Jill F

Re: [ ] infantile spasm

Our daughter Derya has been having seizures since two months of age. She is

now 19 months. Still seizing 20-60 times a day. We have tried every