Re: New Member 1 year old son

[Guest guest]

you can go to this web site for the National Public Library and do research

for abstracts and articles on all aspects of your daughter's seizures. It

has tons of articles.

Zoe

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?SUBMIT=y

[Guest guest]

Hi,

I don't have any information to share, but am interested in cell therapy or

gene therapy too. I have a ten year old daughter who has seizures and

global delays. I have read a lot about stem cell therapy, but was under the

impression it was only experimental, and not being used yet. I have read a

lot of postings about FGF therapy also, but the parents have to take their

children to Mexico for treatment.

If you get any valuable information, I would really like to hear about it

too.

Sincerely,

Terri

[Guest guest]

try a magnet mattress. Sexton

angelrok13@... wrote:

>

> I am a new member. I have a 1 year old son who started having

> seizures in September. We have been through several meds, he is

> currently on 3, felbatol, tegretol & sabril (weaning off). We have

> an excellent Doctor and I have read every medical book available

> about nuerology and epilepsy. He has had every test (including a

> muscle biopsy) has been negative until last week, his MRI showed

> atrophy. I wanted to know if anyone knew anything about cell

> therapy. I have found some web sites and met a woman who is going to

> try it with her 2 year old but I want more info. So please if anyone

> knows anything let me know.

>

> thank you

>

> ------------------------------------------------------------------------

> Failed tests, classes skipped, forgotten locker combinations.

> Remember the good 'ol days

> 1/4053/9/_/442641/_/960075284/

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[Guest guest]

Think about whether this is a vaccine reaction....

Chelate mercury

Re: [ ] New Member 1 year old son

>try a magnet mattress. Sexton

>

>angelrok13@... wrote:

>>

>> I am a new member. I have a 1 year old son who started having

>> seizures in September. We have been through several meds, he is

>> currently on 3, felbatol, tegretol & sabril (weaning off). We have

>> an excellent Doctor and I have read every medical book available

>> about nuerology and epilepsy. He has had every test (including a

>> muscle biopsy) has been negative until last week, his MRI showed

>> atrophy. I wanted to know if anyone knew anything about cell

>> therapy. I have found some web sites and met a woman who is going to

>> try it with her 2 year old but I want more info. So please if anyone

>> knows anything let me know.

>>

>> thank you

>>

>> ------------------------------------------------------------------------

>> Failed tests, classes skipped, forgotten locker combinations.

>> Remember the good 'ol days

>> 1/4053/9/_/442641/_/960075284/

>> ------------------------------------------------------------------------

>>

>> _

>>

>>

[Guest guest]

,

Cell therepy is at a very early stage and it is dependent on the place of the

atrophy. my son has mesial temporal sclerosis which is an atrophy on the

inner portion of his temporallobe. there are areas of the brain that have

been successful and others that have not. therea re neuro at yale that are

invovled inthis research also look t harrvard. i went to a conference on

epielpsy at nih in march which discussed this very subject. Do not jump into

something before knowing everything. i f i was going to do things to my child

i would only use cellt herepy as a last resort. have you tried the ketogenic

diet. this can have very good success in younger children.

good luck with your quest. just remember the risks invovled in such risky

treatments.

[Guest guest]

Hello

I have looked into the vaccine aspect and after all I have learned I have

refused future shots (he had 1 round). If I have more children they will not

be vaccinated either. But I found out on Wed. that the Dr. s believe it was

a birth injury. But you never know the shots may have aggrevated the initial

injury. Thanks for the input, I appreciate it.

[Guest guest]

Hi ,

Thank you for your reply. I would never jump into anything like this. I

just wanted to do some research in case we are in need of a last resort. He

is actually doing great right now but this is most likely the last

medication. I think the diet maybe ruled out due to the fact that his

seizures are so severe they feel he may not survive being weaned off meds and

taking a chance on the diet failing.. This was the impression I ) got last

month when he was hospitalized. But my Dr. is an advocate of the diet so

maybe he will try it. Hopefully this med combo will work?!

Thanks for the info on harvard and Yale.

[Guest guest]

hi,

im new to this list and havent read all of the

archives, so i hope i'm not speaking out of turn or

anything....but i have had uncontrolled (over a

hundred a day of varying types) seizures since i was

born. i'm 17 now. diets didnt work, meds didnt work,

but in november i got a vns implant, that's cut them

by at least 3/4. life just got a whole lot better.

have you looked at something like that for your son?

=====

" You did not hear them coming. You hardly heard them go. The grass bent down,

sprang up again. They passed like cloud shadows downhill...the boys of summer,

running. "

Ray Bradbury

__________________________________________________

[Guest guest]

christine,

if you do the ketogenic diet you can do it inpatient and the weening would be

controlled. One of the best hospitals for that would be johns hopkins.

julie

[Guest guest]

Hi ,

Thank you for replying. I have read about the vns I thought you had to be

older. I would like to know more about it if you would e-mail me with the

info. I am also interested in your progress, (if you dont mind).

Thank you,

[Guest guest]

hi,

i'm not sure about the age limit...i'm 17, so it wasnt

much of an issue. i think i was told that it was being

done with kids as young as three...it might be

something to ask your doctor about though.

what i can tell you about it is purely from

experience..im not a techie by any stretch. it was

easy surgery, almost painless, and very quick. with

some people they dont turn the implant on immediately,

with some they do. they did with me, and although they

told us it could take a long time to see results, we

saw them almost immediately. i have mixed type

seizures, and between them all i was averaging over a

hundred countable ones a day. not much of a life.

probably within a couple of weeks there was a

noticable decrease, and now, 7 months out, i'm down to

maybe 30 countable a day...most of which are little

blank outs that i dont even notice. its a huge

difference. there arent many side effects, it was

turned up too high for a little while, and made me

cough, and when the implant fires, it shuts my voice

off, which is a little annoying but really thats all.

for a couple of months my neck felt vaguely weird,

because of the stimulation, but that went away. we did

have to play around with the settings for a while, and

have tried some different amplitudes and durations etc

etc with not so great results.(and some downright

horrific results) i guess like anything its a matter

of fine tuning it to the individual.

i can turn the device on or off, with a magnet, which

is good if i need to be on the phone and keep my voice

for more than 2.5 minutes at a time ,i can use the

magnet to turn it off temporarily, or if get an aura

i can use the magnet to turn it on and make it fire an

extra time... head it off.

it's a whole lot better than the truckload of meds i

was on before,although i still take depakene, and

certainly better than picking myself up off the floor

20 times a day and all of the health issues that went

along with that.

there are people it doesnt work for as well as it does

for me, and some it doesnt work for at all,(i think

some people have actually had the implants removed

because they didnt work or made it worse) and some

that have had their seizures disappear. i know

cyberonics used to send out a video and info package,

that might be something you'd be interested in looking

over.

if you want really good information,you know, from

people who know what they are talking about lol, go

to www.cyberonics.com, they have all the info on the

devices, and they have a message board FULL of people

who have had this done. some it worked great for, some

it bombed totally with, and a lot of people asking

questions and getting answers.

(i honestly dont mean to sound like an add for this

lol. it's just something that really made a difference

for me)

--- angelrok13@... wrote:

> Hi ,

>

> Thank you for replying. I have read about the vns I

> thought you had to be

> older. I would like to know more about it if you

> would e-mail me with the

> info. I am also interested in your progress, (if

> you dont mind).

>

> Thank you,

>

>

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