Re: I'm new here and need advice.

[Guest guest]

,

I am glad you found this group. I think you will find lots of assistance and

support here. I am not one of the more knowledgeable members here but I know

that many of us believe there is a connection between autism and seizures. You

can also research the group archives for more information. I would suggest also

you check this website http://www.iahp.org/ and explore the area marked

" Programs for Brain Injured Children " .

All good wishes for your family,

M

[Guest guest]

Hi ,

Welcome to the group. I had uncotrolled seizures for many years due

to brain damage from strokes and spinal meningitis. Brain surgery

failed to stop them. I've been seizure free without drugs since July

of 1998. Keep in mind that epilepsy is not a disease. It is merely

the term used to describe a seizure disorder. Seizures are a symptom.

Just as your daughter's seizure was a symptom related to her fever,

your son's seizures are also related to something--you just don't

know what right now. There is a lot of information available to you

on the Internet. You may want to contact the Association for

Comprehensive Neurology (http://www.latitudes.org/brd_mem.html) They

may be a good resource for you to find other treatment for your son

and information and support for yourself. You can contact them from

their web page. Have you tried putting your son on a gluten and

lactose free diet?

The rash can be a serious side effect of dilantin. One of the

longer term side effects of dilantin is osteoporosis (or a form of

adult rickets). It interferes with how the body utilizes vitamin D

and can upset the function of the parathyroid gland which regulates

calcium levels. That in turn is going to affect brain and nervous

system function (could worsen the seizures), not to mention bones. I

took dilantin in the 1980s and now have osteoporosis.

If your baby's neuro isn't willing to look at drug side effects or

administer and monitor them safely, have you thought of finding

another specialist for a second opinion? Since you mentioned Yale,

I'm assuming you are on the east coast. Did your child have a

thorough work up for metabolic disorders?

There are more than a thousand types of inborn errors of metabolism

many of which can have seizures as a symptom. Seizures are always a

symptom, not the disorder. Did the doctor get a liver function test

after the baby developed the rash? The rush to treat seizures as

a " disease " i.e. ignore their underlying cause, can be hazardous to

health and to the development of children. The drugs can impair

cognitive function (at any age) and development.

As much as forty percent of the time seizure disorders are

misdiagnosed

(http://www.acc.org/media/releases/highlights/2000/july00/seizure.htm

). Very frequently people diagnosed as having epilepsy have

unrecognized cardiac disorders. Drugs for seizures could make other

health conditions worse. There never seem to be simple or clear

answers for seizures, so many things can cause them to happen.

Dilantin is also a recognized cause of hepatitis

(http://www.intelihealth.com/IH/ihtIH/WSMST000/8270/8461/195724.html?

d=dmtHealthAZ).

Sigma-Tau pharmaceuticals makes " orphan " drugs-drugs for people

with rare diseases for which there is no big commercial demand for

medication. They have focused a lot on metabolic disorders involving

carnitine. They used to have a very good PR packet with a booklet

listing specialists in metabolic disorders for children. You can

contact them from their web page

(http://www.acc.org/media/releases/highlights/2000/july00/seizure.htm

) and ask for the information to find someone close to you who would

know what to look for. The groups on inborn errors may also be able

to give you more support and advice on finding out where to get the

best treatment for your son. Below are some links that may help you.

Keep posting here what you find and how things are going. You will

find support here and we will appreciate what you bring to the group.

Zoe

---

Inborn errors of metabolism: Organic Acidemia Association

.... Inborn errors of metabolism should be suspected (and often

aren't) in any child

with persistent vomiting ... Seizures occur in about 30% of affected

infants. ...

http://www.oaanews.org/article.asp?article=113

http://www.acc.org/media/releases/highlights/2000/july00/seizure.htm

-- American College of Cardiology, press release

http://medtronics.com/reveal/seizures/index.html

-- Information on seizures, fainting, evaluation, and finding a

physician. Information for physicians as well.

PDF] Dilantin-125®

File Format: PDF/Adobe Acrobat - View as HTML

.... CONTRAINDICATIONS Dilantin is contraindicated in those patients

with a history

of ... symptoms and signs resembling serum sickness, eg, fever, rash,

and liver ...

http://www.pfizer.com/download/uspi_dilantin125.pdf

Dilantin Warnings, Precautions, Pregnancy, Nursing, Abuse ...

.... Lymph node involvement may occur with or without symptoms and

signs

resembling serum sickness, eg, fever, rash and liver involvement. ...

www.rxlist.com/cgi/generic/phenyt_wcp.htm

[Guest guest]

Zoe,

Thanks so much for your reply. So much to digest. I'm on the edge

stress wise and just trying to go one step at a time.

He did have the spinal tap to check for meningitis. We did have him

evaulated at Yale be that was before the seizure thing. It opens up

new windows and areas to explore.

Thanks so much for such valuable information and I will check each

thing you mentioned. My son isn't on the gluten free Casein/latoce

freet diet. His sister who has autsim is on gluten free and we need

to retest her for dairy as I feel she is craving it which would also

signal intolerance.

So you'll see me around as I always need support for such a crazy

life.

-- In , " zoe88025 " <Zll51@h...> wrote:

> Hi ,

>

> Welcome to the group. I had uncotrolled seizures for many years due

> to brain damage from strokes and spinal meningitis. Brain surgery

> failed to stop them. I've been seizure free without drugs since

July

> of 1998. Keep in mind that epilepsy is not a disease. It is merely

> the term used to describe a seizure disorder. Seizures are a

symptom.

> Just as your daughter's seizure was a symptom related to her fever,

> your son's seizures are also related to something--you just don't

> know what right now. There is a lot of information available to

you

> on the Internet. You may want to contact the Association for

> Comprehensive Neurology (http://www.latitudes.org/brd_mem.html)

They

> may be a good resource for you to find other treatment for your son

> and information and support for yourself. You can contact them

from

> their web page. Have you tried putting your son on a gluten and

> lactose free diet?

> The rash can be a serious side effect of dilantin. One of the

> longer term side effects of dilantin is osteoporosis (or a form of

> adult rickets). It interferes with how the body utilizes vitamin D

> and can upset the function of the parathyroid gland which regulates

> calcium levels. That in turn is going to affect brain and nervous

> system function (could worsen the seizures), not to mention bones.

I

> took dilantin in the 1980s and now have osteoporosis.

> If your baby's neuro isn't willing to look at drug side effects

or

> administer and monitor them safely, have you thought of finding

> another specialist for a second opinion? Since you mentioned Yale,

> I'm assuming you are on the east coast. Did your child have a

> thorough work up for metabolic disorders?

> There are more than a thousand types of inborn errors of metabolism

> many of which can have seizures as a symptom. Seizures are always

a

> symptom, not the disorder. Did the doctor get a liver function test

> after the baby developed the rash? The rush to treat seizures as

> a " disease " i.e. ignore their underlying cause, can be hazardous to

> health and to the development of children. The drugs can impair

> cognitive function (at any age) and development.

> As much as forty percent of the time seizure disorders are

> misdiagnosed

>

(http://www.acc.org/media/releases/highlights/2000/july00/seizure.htm

> ). Very frequently people diagnosed as having epilepsy have

> unrecognized cardiac disorders. Drugs for seizures could make other

> health conditions worse. There never seem to be simple or clear

> answers for seizures, so many things can cause them to happen.

> Dilantin is also a recognized cause of hepatitis

>

(http://www.intelihealth.com/IH/ihtIH/WSMST000/8270/8461/195724.html?

> d=dmtHealthAZ).

> Sigma-Tau pharmaceuticals makes " orphan " drugs-drugs for people

> with rare diseases for which there is no big commercial demand for

> medication. They have focused a lot on metabolic disorders

involving

> carnitine. They used to have a very good PR packet with a booklet

> listing specialists in metabolic disorders for children. You can

> contact them from their web page

>

(http://www.acc.org/media/releases/highlights/2000/july00/seizure.htm

> ) and ask for the information to find someone close to you who

would

> know what to look for. The groups on inborn errors may also be

able

> to give you more support and advice on finding out where to get

the

> best treatment for your son. Below are some links that may help

you.

> Keep posting here what you find and how things are going. You will

> find support here and we will appreciate what you bring to the

group.

> Zoe

> ---

>

> Inborn errors of metabolism: Organic Acidemia Association

> ... Inborn errors of metabolism should be suspected (and often

> aren't) in any child

> with persistent vomiting ... Seizures occur in about 30% of

affected

> infants. ...

> http://www.oaanews.org/article.asp?article=113

>

>

http://www.acc.org/media/releases/highlights/2000/july00/seizure.htm

> -- American College of Cardiology, press release

>

> http://medtronics.com/reveal/seizures/index.html

> -- Information on seizures, fainting, evaluation, and finding a

> physician. Information for physicians as well.

>

> PDF] Dilantin-125®

> File Format: PDF/Adobe Acrobat - View as HTML

> ... CONTRAINDICATIONS Dilantin is contraindicated in those patients

> with a history

> of ... symptoms and signs resembling serum sickness, eg, fever,

rash,

> and liver ...

> http://www.pfizer.com/download/uspi_dilantin125.pdf

>

> Dilantin Warnings, Precautions, Pregnancy, Nursing, Abuse ...

> ... Lymph node involvement may occur with or without symptoms and

> signs

> resembling serum sickness, eg, fever, rash and liver

involvement. ...

> www.rxlist.com/cgi/generic/phenyt_wcp.htm

[Guest guest]

,

We all risk burn out from information overload these days. We have

to pace ourselves to what we can handle. There are plenty of folks

here who will be there for you. I get on here just to rant sometimes.

Take care,

Zoe

> > Hi ,

> >

> > Welcome to the group. I had uncotrolled seizures for many years

due

> > to brain damage from strokes and spinal meningitis. Brain surgery

> > failed to stop them. I've been seizure free without drugs since

> July

> > of 1998. Keep in mind that epilepsy is not a disease. It is

merely

> > the term used to describe a seizure disorder. Seizures are a

> symptom.

> > Just as your daughter's seizure was a symptom related to her

fever,

> > your son's seizures are also related to something--you just don't

> > know what right now. There is a lot of information available to

> you

> > on the Internet. You may want to contact the Association for

> > Comprehensive Neurology (http://www.latitudes.org/brd_mem.html)

> They

> > may be a good resource for you to find other treatment for your

son

> > and information and support for yourself. You can contact them

> from

> > their web page. Have you tried putting your son on a gluten and

> > lactose free diet?

> > The rash can be a serious side effect of dilantin. One of the

> > longer term side effects of dilantin is osteoporosis (or a form

of

> > adult rickets). It interferes with how the body utilizes vitamin

D

> > and can upset the function of the parathyroid gland which

regulates

> > calcium levels. That in turn is going to affect brain and nervous

> > system function (could worsen the seizures), not to mention

bones.

> I

> > took dilantin in the 1980s and now have osteoporosis.

> > If your baby's neuro isn't willing to look at drug side effects

> or

> > administer and monitor them safely, have you thought of finding

> > another specialist for a second opinion? Since you mentioned

Yale,

> > I'm assuming you are on the east coast. Did your child have a

> > thorough work up for metabolic disorders?

> > There are more than a thousand types of inborn errors of

metabolism

> > many of which can have seizures as a symptom. Seizures are

always

> a

> > symptom, not the disorder. Did the doctor get a liver function

test

> > after the baby developed the rash? The rush to treat seizures as

> > a " disease " i.e. ignore their underlying cause, can be hazardous

to

> > health and to the development of children. The drugs can impair

> > cognitive function (at any age) and development.

> > As much as forty percent of the time seizure disorders are

> > misdiagnosed

> >

>

(http://www.acc.org/media/releases/highlights/2000/july00/seizure.htm

> > ). Very frequently people diagnosed as having epilepsy have

> > unrecognized cardiac disorders. Drugs for seizures could make

other

> > health conditions worse. There never seem to be simple or clear

> > answers for seizures, so many things can cause them to happen.

> > Dilantin is also a recognized cause of hepatitis

> >

>

(http://www.intelihealth.com/IH/ihtIH/WSMST000/8270/8461/195724.html?

> > d=dmtHealthAZ).

> > Sigma-Tau pharmaceuticals makes " orphan " drugs-drugs for

people

> > with rare diseases for which there is no big commercial demand

for

> > medication. They have focused a lot on metabolic disorders

> involving

> > carnitine. They used to have a very good PR packet with a booklet

> > listing specialists in metabolic disorders for children. You can

> > contact them from their web page

> >

>

(http://www.acc.org/media/releases/highlights/2000/july00/seizure.htm

> > ) and ask for the information to find someone close to you who

> would

> > know what to look for. The groups on inborn errors may also be

> able

> > to give you more support and advice on finding out where to get

> the

> > best treatment for your son. Below are some links that may help

> you.

> > Keep posting here what you find and how things are going. You

will

> > find support here and we will appreciate what you bring to the

> group.

> > Zoe

> > ---

> >

> > Inborn errors of metabolism: Organic Acidemia Association

> > ... Inborn errors of metabolism should be suspected (and often

> > aren't) in any child

> > with persistent vomiting ... Seizures occur in about 30% of

> affected

> > infants. ...

> > http://www.oaanews.org/article.asp?article=113

> >

> >

>

http://www.acc.org/media/releases/highlights/2000/july00/seizure.htm

> > -- American College of Cardiology, press release

> >

> > http://medtronics.com/reveal/seizures/index.html

> > -- Information on seizures, fainting, evaluation, and finding a

> > physician. Information for physicians as well.

> >

> > PDF] Dilantin-125®

> > File Format: PDF/Adobe Acrobat - View as HTML

> > ... CONTRAINDICATIONS Dilantin is contraindicated in those

patients

> > with a history

> > of ... symptoms and signs resembling serum sickness, eg, fever,

> rash,

> > and liver ...

> > http://www.pfizer.com/download/uspi_dilantin125.pdf

> >

> > Dilantin Warnings, Precautions, Pregnancy, Nursing, Abuse ...

> > ... Lymph node involvement may occur with or without symptoms and

> > signs

> > resembling serum sickness, eg, fever, rash and liver

> involvement. ...

> > www.rxlist.com/cgi/generic/phenyt_wcp.htm