Re: My son's story...

[Guest guest]

Jill

A couple of things hit me here, muscle wasting, speech problems etc.

Look to see if your child is not mercury or aluminum poisined from either

the environment or childhood vaccines, then also remove it safely with

chelation or homeopathics, and or go for removal of all MSG foods

(see www.truthinlabeling.com ). Also, when he turned 5, did he

get booster shots? Have you checked for LKS?

Kathy

[ ] My son's story...

> We are pretty new to this group (thanks for sharing, Sandi!) and I've

> been reading and observing stories and comments over the last few weeks.

> It is amazing the vast array of issues that are somehow very similar.

> We have been working the medical system over the last 6 years with our

> son, and have begun delving in the alternative world, which I find

> fascinating yet overwhelming all at the same time. Here is our story

> in a nutshell and we're interested in any comments or suggestions.

> is now 9 and started having seizures at age 3 for no known reason

> (that we've pinpointed yet). He was a full term, no complications

> delivery with normal milestone until around age 5.

> We started Tegretol at age 4, switched to Depakote about 6 months later,

> tried the Keto Diet x 2 years, added Klonopin, dropped Klonopin after 2

> years, started Clobazam (from Canada), stopped it after 4 months, and

> started Topamax. We also have had the VNS x 2 years (which hasn't

> helped much in our opinion). He is currently on

> Depakote/Topamax/Carnitor

> He seems to switch seizure type with each new medication or treatment

> plan, but currently has myoclonic & tonic clonic seizures mainly late

> night/early am.

> We had a mitochondrial workup & muscle biopsy done that were

> inconclusive, but we are going to UCSD for a complete

> Metabolic/Mitochondrial workup in January. Over the last 3 years he has

> developed global delays, significantly lost muscle tone, balance,

> speech, and thought processing. Some days he has it more then others.

> At this point we are open to trying anything new and promising. His

> current epileptologist thinks we should consider the Corpus Callisotomy

> surgery, but we just don't feel it has the results needed to undergo

> brain surgery.

> So, I look to groups like this, to give us hope and suggestions for new

> options to research.

> Thanks for your time and your input.

> Jill

>

>

>

>

[Guest guest]

Jill-

My daughter has Landau Kleffner Syndrome and she has speech delays and

processing problems also. We also have the VNS and even though we just had

it implanted July we have seen severe side effects from it. Our daughter is

the only one that has it with no drug intervention. We too have been on a

long list of drugs and we removed them due to toxic symptoms. She is 5, We

then put her on Evening Primrose Oil and have had a 75% drop in seizures. We

then added Fish oil and saw a 10% decrease. We put her on Bacopa and

Ashwagandha and this improved her alertness and brain function. We added

Ambrostose which is for brain cell growth and Put her on Carn-aware which

has really brought back her speech and understanding.

S.

-- [ ] My son's story...

We are pretty new to this group (thanks for sharing, Sandi!) and I've

been reading and observing stories and comments over the last few weeks.

It is amazing the vast array of issues that are somehow very similar.

We have been working the medical system over the last 6 years with our

son, and have begun delving in the alternative world, which I find

fascinating yet overwhelming all at the same time. Here is our story

in a nutshell and we're interested in any comments or suggestions.

is now 9 and started having seizures at age 3 for no known reason

(that we've pinpointed yet). He was a full term, no complications

delivery with normal milestone until around age 5.

We started Tegretol at age 4, switched to Depakote about 6 months later,

tried the Keto Diet x 2 years, added Klonopin, dropped Klonopin after 2

years, started Clobazam (from Canada), stopped it after 4 months, and

started Topamax. We also have had the VNS x 2 years (which hasn't

helped much in our opinion). He is currently on

Depakote/Topamax/Carnitor

He seems to switch seizure type with each new medication or treatment

plan, but currently has myoclonic & tonic clonic seizures mainly late

night/early am.

We had a mitochondrial workup & muscle biopsy done that were

inconclusive, but we are going to UCSD for a complete

Metabolic/Mitochondrial workup in January. Over the last 3 years he has

developed global delays, significantly lost muscle tone, balance,

speech, and thought processing. Some days he has it more then others.

At this point we are open to trying anything new and promising. His

current epileptologist thinks we should consider the Corpus Callisotomy

surgery, but we just don't feel it has the results needed to undergo

brain surgery.

So, I look to groups like this, to give us hope and suggestions for new

options to research.

Thanks for your time and your input.

Jill

[Guest guest]

Hi Jina:

I also have a 4.4 year old daughter who has seizures.

We put her on Bacopa and

> Ashwagandha and this improved her alertness and brain function

Where can you get these products?

Thanks

Sha

> Jill-

>

> My daughter has Landau Kleffner Syndrome and she has speech delays

and

> processing problems also. We also have the VNS and even though we

just had

> it implanted July we have seen severe side effects from it. Our

daughter is

> the only one that has it with no drug intervention. We too have

been on a

> long list of drugs and we removed them due to toxic symptoms. She

is 5, We

> then put her on Evening Primrose Oil and have had a 75% drop in

seizures. We

> then added Fish oil and saw a 10% decrease. We put her on Bacopa

and

> Ashwagandha and this improved her alertness and brain function. We

added

> Ambrostose which is for brain cell growth and Put her on Carn-

aware which

> has really brought back her speech and understanding.

> S.

>