Re: Question for the Group.....

August 31, 2002

Ellen, I am weaning Tegretol. Any words of advice to offer with that

particular one? Nate has failed 3 previous weans. But am noticing some days

are better than others.

Starting this week, I will be getting him back into his HBOT chamber to see

if this helps him too.

Hugs

Tammy & Nate

August 31, 2002

I truly belive that. The drugs were when alot o Katy's sezuires started. I

noticed after a month or so the sezuires had started. We never took her off

till the Hyperbaric Dr. sugested it. since she has been off she has had no

sezuires. It is amazeing.

Darin

August 31, 2002

THank you all I had that feeling they were not harmfull you should see the

amounts of meds this kid is on. I can't belive it.

Darin

August 31, 2002

In my child's experience with intractable seizures, the drugs CAUSE the

myoclonics...and other seizure types, depending on the drug. Typically for

her, these seizures become worse until that particular drug has been weaned.

11 years experience and 7 different drugs/drug combos. But the neuros tend

not to believe this, or at least not admit that they believe this, because

they have little else that they would willingly offer in exchange for the

drugs. Ellen (currently weaning - VERY slowly- phenobarbital)

[ ] Question for the Group.....

> I ran into a parent while I was away this week that has a disturbing

> question. Has anyone from the group had much experience with Myoclonic

> sezuires. How they efect the body and are they harmfull. A mother I spoke

> with in the Airport has a child that has very mild Myoclonic Sezuires and

the

> Dr. has the child on very high levels of Valproic acid and Topamax. The

> levels os medication they have this child on is way over the amount that

had

> My daughter on when she was having severe sezuires. I offered no advise it

> just disturbed me. My Dr. actually told us that mild Myoclonic's where not

as

> harmfull as the medication that they would give a child that was having

them.

> It's just a question I don't plan on giving any advise or Im not a medical

> Dr. and would not want the child to suffer from something I said it has

just

> been on my mind since we left and I wanted to know have any of you had any

> experience with this.

>

> Darin

>

August 31, 2002

I would go very slow, much slower and at lower increments than what the doc

recommend and expect withdrawal seizures, don't panic if you see more sz and

increase the drug level, but ride it out a few days and see if it

stabilizes. I did not find Tegretol to be a difficult wean. I did find that

she no longer had absence sz after she stopped taking Teg. I'm not sure, but

would think HBOT would help. Good luck! Ellen

Re: [ ] Question for the Group.....

> Ellen, I am weaning Tegretol. Any words of advice to offer with that

> particular one? Nate has failed 3 previous weans. But am noticing some

days

> are better than others.

>

> Starting this week, I will be getting him back into his HBOT chamber to

see

> if this helps him too.

>

> Hugs

> Tammy & Nate

August 31, 2002

Our son often has very mild myoclonic movements or possibly mini-seizures

lasting for a couple of seconds. His neurologist has stated that these pose

no risk of any brain damage and they are not being treated with any

anti-seizure medication. He doesn't seem to suffer from these movements and

we like the fact that he is no longer being drugged with Phenobarb which he

was on just after his birth.

and Snow

At 01:41 AM 8/31/02 EDT, you wrote:

>I ran into a parent while I was away this week that has a disturbing

>question. Has anyone from the group had much experience with Myoclonic

>sezuires. How they efect the body and are they harmfull. A mother I spoke

>with in the Airport has a child that has very mild Myoclonic Sezuires and

the

>Dr. has the child on very high levels of Valproic acid and Topamax. The

>levels os medication they have this child on is way over the amount that had

>My daughter on when she was having severe sezuires. I offered no advise it

>just disturbed me. My Dr. actually told us that mild Myoclonic's where not

as

>harmfull as the medication that they would give a child that was having

them.

>It's just a question I don't plan on giving any advise or Im not a medical

>Dr. and would not want the child to suffer from something I said it has just

>been on my mind since we left and I wanted to know have any of you had any

>experience with this.

>

>Darin

>

August 31, 2002

This is how we brought our son off Phenobarbital. Very slowly and when we

met with his Neurologist 6 months later, informed him that was no

longer requiring the medication. We were fortunate that 's seizures

lessened and stopped. He was undergoing Cranial Sacral therapy at the time

and we chose to lessen his phenobarb based upon the presence or absence of

seizures. Neurologists love to use medications. That is all they really

can do.

At 08:23 AM 8/31/02 -0500, you wrote:

>I would go very slow, much slower and at lower increments than what the doc

>recommend and expect withdrawal seizures, don't panic if you see more sz and

>increase the drug level, but ride it out a few days and see if it

>stabilizes. I did not find Tegretol to be a difficult wean. I did find that

>she no longer had absence sz after she stopped taking Teg. I'm not sure, but

>would think HBOT would help. Good luck! Ellen

>

> Re: [ ] Question for the Group.....

>

>> Ellen, I am weaning Tegretol. Any words of advice to offer with that

>> particular one? Nate has failed 3 previous weans. But am noticing some

>days

>> are better than others.

>>

>> Starting this week, I will be getting him back into his HBOT chamber to

>see

>> if this helps him too.

>>

>> Hugs

>> Tammy & Nate

>

>_._._._._._._._._._._._._._._._._._._._._._._._._._._._._._._._._._._._._.

>Unrestricted downloads of 50+ pdf files on HBOT efficacy

medicaid/files/

>

>Download your state EPSDT program

http://www.hcfa.gov/medicaid/stateplan/Map.asp by doing a search on the

word " ameliorate " . State Medicaid websites

http://www.medi-cal.ca.gov/RelSites_Oth_States.asp . Medicaid waiver

programs: http://www.geocities.com/HotSprings/Villa/1029/medicaid.html

>

>Find a hyperbaric clinic http://www.netnet.net/mums/hbolist.htm

>

>HBOT can save billions of dollars and millions of heartaches. Subscribe to

by sending a blank email to

mailto:medicaid-subscribe

>

>Unsubscribe? Click here mailto:medicaid-unsubscribe .

>

September 2, 2002

In a message dated 8/31/2002 11:29:55 AM Eastern Daylight Time,

Bry8825@... writes:

> I truly belive that. The drugs were when alot o Katy's sezuires started. I

> noticed after a month or so the sezuires had started. We never took her off

> till the Hyperbaric Dr. sugested it. since she has been off she has had no

> sezuires. It is amazeing.

>

((((((((Darin)))))))))))

That is in basic because *most* MDs don't know..... or if they don't care

because it's not the " norm " but most kids with any neurological issues also

will have some from of chemical sensitivity..... minimal to extreme......

therefore giving them more chemicals will only aggravate the issue trigger

more seizures.....kinda like rubbing on a blister..... we lived that roller

coaster from March to Sept 97...... it was a nightmare..... Thank God for

that HBOT Dr......

Love yas!

)

Mom to i ~ ACC, DWS, SID, LMC-TCS, PDD-NOS, ABCDEFG Kid

Who continues to show us what the power of prayer will overcome!

<A HREF= " http://www.noahcenter.com/ " >N.O.A.H. Center</A> <~Click for our

" latest " updates )

Remember, Amateurs built the ark. (given plans from the Master craftsmen)

Professionals built the Titanic. (given plans from mere men)

Old Romanian saying.... " Sometimes, God will allow a Tear on our cheek,

only because He wants to raise a Rainbow in out hearts. " Romans 8:28

<A HREF= " http://www.forfranki.com/ " >For i Foundation</A>

" Be careful. Don't think these little children are worth nothing. I tell

you they have angels in heaven who are always with my Father in heaven. "

18:10

<A HREF= " http://hometown.aol.com/frankisangels/DollarMinistry.html " >i's

Angels</A> <~ Small commitment ~ Big returns

" Commit to the Lord whatever you do, and your plans will succeed. " Proverbs

16:3

<A HREF= " http://www.petitiononline.com/angel777/petition.html " >The Awakening

Petition for HBOT/HDOT</A> <~~PLEASE SIGN!

" Never doubt that a small group of committed people can change the world.

Indeed, it is the only thing that ever has. " ~ Margaret Mead

<~~i's updates etc....

THE POWER OF GOD

When there is nothing left but God....

that is when you find out God is all you need.

September 2, 2002

you are a true saint I can't wit to meet you even if I have to make a

trip just for that purpose. I find you amazeing. God has truly put a specail

yurning in my heart to do so. You are incredible and your story when reading

it is so much like ours. I want to talk to you some time. I will be out of

town this next three weeks for hyoerbaric and wil have plent of time to talk.

Im emailing you My cell # please call I have so many question I wan to talk

with you about. Also Some things i owuld like ot discuss with you.

Darin

Support Tony For Texas Govenor and you are saying, Yes we want better

Health care. He will make the difference. If you have a disabled child like

me, vote for Tony. Our kid's lives depend on it.

The Family Email address is Bry8825@...

Visit our Daughters website

@www.katysplace.fullmoonwebs.com

Visit and please sign the guestbook.

We have also featured an HBO child of the month on the site, this is a child

receiveing Hyperbaric Oxyegen for some type of injury, these storys will

break your heart.

Darin age 32

Janie age32

Katlyn age 8

Or Just Click here

<A HREF= " http://www.katysplace.fullmoonwebs.com/ " >Katy's Place</A>

Janie is my lovely wife for fourteen years.

We were married on February 13, 1988.

Katy is My lovely Daughter Born on November 13, 1992. That was a miracle from

God read all about it in her website <A

HREF= " http://www.katysplace.fullmoonwebs.com/ " >Katy's Place</A> Just Click

here.

We Live In Texas Yes the southern state.

September 2, 2002

Ed Katy was not hte child I ws reffering to but since we mentioned her. She

has litle Jerks perodically and they don't seem to efect her just for a min .

Sometimes even shorter but she never looses the abilty to continue the task

as most do during this Ihave video taped them no Dr. will coment on then or I

dhould say neurologist.

Darin

Support Tony For Texas Govenor and you are saying, Yes we want better

Health care. He will make the difference. If you have a disabled child like

me, vote for Tony. Our kid's lives depend on it.

The Family Email address is Bry8825@...

Visit our Daughters website

@www.katysplace.fullmoonwebs.com

Visit and please sign the guestbook.

We have also featured an HBO child of the month on the site, this is a child

receiveing Hyperbaric Oxyegen for some type of injury, these storys will

break your heart.

Darin age 32

Janie age32

Katlyn age 8

Or Just Click here

<A HREF= " http://www.katysplace.fullmoonwebs.com/ " >Katy's Place</A>

Janie is my lovely wife for fourteen years.

We were married on February 13, 1988.

Katy is My lovely Daughter Born on November 13, 1992. That was a miracle from

God read all about it in her website <A

HREF= " http://www.katysplace.fullmoonwebs.com/ " >Katy's Place</A> Just Click

here.

We Live In Texas Yes the southern state.

September 2, 2002

Well said Ed. I beleive you are right. Valproic acid is wht katy was weened

of and after a year is when we saw the little Jerk's rturn however Valproic

acid seemed to make her very sleepy all the time and drool like crazy she no

longer drool's at all off the medication and is much better. Doesn't have

neer the problems she had taking it.

Darin

September 2, 2002

Like I aid earlier HBOT and Only after HBOT did we stop the meds. To tell you

the truth Im glad there gone because our life and Katys is so much better not

near the problems as before.

Darin

Support Tony For Texas Govenor and you are saying, Yes we want better

Health care. He will make the difference. If you have a disabled child like

me, vote for Tony. Our kid's lives depend on it.

The Family Email address is Bry8825@...

Visit our Daughters website

@www.katysplace.fullmoonwebs.com

Visit and please sign the guestbook.

We have also featured an HBO child of the month on the site, this is a child

receiveing Hyperbaric Oxyegen for some type of injury, these storys will

break your heart.

Darin age 32

Janie age32

Katlyn age 8

Or Just Click here

<A HREF= " http://www.katysplace.fullmoonwebs.com/ " >Katy's Place</A>

Janie is my lovely wife for fourteen years.

We were married on February 13, 1988.

Katy is My lovely Daughter Born on November 13, 1992. That was a miracle from

God read all about it in her website <A

HREF= " http://www.katysplace.fullmoonwebs.com/ " >Katy's Place</A> Just Click

here.

We Live In Texas Yes the southern state.

September 2, 2002

Topamax has no effect on sezuire with Katy or several other's I know pull out

the lancet and southwest medical journal read up on it. This medication has

not been shown to reduce sezuire ativtivity. In fact caused so many more

problems that what it was worth all the side eefect that are listed with this

med did indead happen. I have a closet full of it and would not recomend for

sezuire. Look into this med really hard before considering. If they told you

weght gain would reduce ask them about fluid retention gain it was horrible.

Don't mean to scare yuo but we had a go with sezuire's for some time Katy was

on 4 sezuire meds at one time and then on one at a time before HBOT and after

HbOT we have none now. Topamax is expensive and does nothing as far as we

seen There is a mother down the street from me that is having the same side

effects fro this mostly fluid retentoin and others if you need the

information on this emai me I have all the articles and it will suprise you.

Darin

Support Tony For Texas Govenor and you are saying, Yes we want better

Health care. He will make the difference. If you have a disabled child like

me, vote for Tony. Our kid's lives depend on it.

The Family Email address is Bry8825@...

Visit our Daughters website

@www.katysplace.fullmoonwebs.com

Visit and please sign the guestbook.

We have also featured an HBO child of the month on the site, this is a child

receiveing Hyperbaric Oxyegen for some type of injury, these storys will

break your heart.

Darin age 32

Janie age32

Katlyn age 8

Or Just Click here

<A HREF= " http://www.katysplace.fullmoonwebs.com/ " >Katy's Place</A>

Janie is my lovely wife for fourteen years.

We were married on February 13, 1988.

Katy is My lovely Daughter Born on November 13, 1992. That was a miracle from

God read all about it in her website <A

HREF= " http://www.katysplace.fullmoonwebs.com/ " >Katy's Place</A> Just Click

here.

We Live In Texas Yes the southern state.

September 2, 2002

Darin,

This is a challenging area, and it appears that everyone, including the

physicians/neurologists speculate with these. This story illustrates many

facets of these challenges parents and physicians face.

Shortly after was born, she began to have seizures. We went to

here neurologist, of course, and had been developing a second opinion

neurologist at the U. Calif. San Francisco Medical Center (Dr. Mobley) who

is one of the tops around.

Dr. Mobley thought was having myoclonic seizures and was

recommending some fairly aggressive anti-seizure medicine for her because

those seizures are thought to create increasing damage (a " necrotising "

seizure). Instead of using his recommended medicine, we actually purchased

Sabrile from England and was preparing to use it for (it is not

available in the US). Fortunately, 's own neurologist conferred

with Mobley and they both ended up agreeing that had partial

complex seizures, to which Dr. Asaikar prescribed tegretol for, and

's seizures stopped shortly thereafter.

So, did not have myoclonic seizures and tegretol took care of the

seizures and had minimal effect on her life.

First, very few physicians actually see a child in a seizure and have to

rely on parental explanations of what the child is doing. Additionally, it

appears that seizures can be challenging to categorize, third, the child's

seizures, even if properly diagnosed, may or may not respond well to the

medicine, finally, the child's seizures may change, over time. A child

with seizures may stop having seizures, and a child with no history of

seizures may suddenly have one.

Finally, I have not figured out how neurologists choose an anti-seizure

medicine. Currently, there are a number of medicines under investigation,

and a fair number already on the market.

Hope this helps, but I think it will just confirm the confusion.

Bet wishes to All!

Ed Nemeth

At 01:41 AM 8/31/2002 -0400, you wrote:

>I ran into a parent while I was away this week that has a disturbing

>question. Has anyone from the group had much experience with Myoclonic

>sezuires. How they efect the body and are they harmfull. A mother I spoke

>with in the Airport has a child that has very mild Myoclonic Sezuires and the

>Dr. has the child on very high levels of Valproic acid and Topamax. The

>levels os medication they have this child on is way over the amount that had

>My daughter on when she was having severe sezuires. I offered no advise it

>just disturbed me. My Dr. actually told us that mild Myoclonic's where not as

>harmfull as the medication that they would give a child that was having them.

>It's just a question I don't plan on giving any advise or Im not a medical

>Dr. and would not want the child to suffer from something I said it has just

>been on my mind since we left and I wanted to know have any of you had any

>experience with this.

>

>Darin

>

September 2, 2002

Tammy & Nate,

We weaned off Tegretol twice

partial complex seizures at birth - weaned at two years old

Static Gran Mal seizures at 4 years old - weaned at 5.5 years old.

The issue of the weaning is, does the child still need the medicine? And,

if the child is on the medicine, how do you know he doesn't need it, if he

is currently seizure free with it? It is somewhat a shot in the dark.

We were lucky, not smart, or skilled, or anything else. went

seizure free for about a year an a half each time and we slowly reduced her

tegretol over the course of a few months. Tegretol remains in the body

over a period of time (which is why you never double up the dosage if you

miss a dose). So, tegretol slowly increases and decreases in the child's

body. Also, we gave the tegretol as a ground up pill three times

per day. So, her blood level remained fairly stable when she was taking it.

So, when we reduced her dosage, it was only gradually and it her blood

levels only slowly were reduced. Is this why it was successful?.... flip a

coin as far as I am concerned. I believe has been blessed with

some physical recovery and that is why she was able to be withdrawn.

ly, I would like to credit HBOT to 's second withdrawal from

tegretol because I do believe it helped. But, I think she was just one of

those lucky kids in that respect.

Please keep us informed.

Best wishes for Nate.

Ed Nemeth

At 09:05 AM 8/31/2002 -0400, you wrote:

>Ellen, I am weaning Tegretol. Any words of advice to offer with that

>particular one? Nate has failed 3 previous weans. But am noticing some days

>are better than others.

>

>Starting this week, I will be getting him back into his HBOT chamber to see

>if this helps him too.

>

>Hugs

>Tammy & Nate

>

September 2, 2002

Ellen,

Sorry, I would disagree. If the child has a seizure when being removed

from the meds. I would think the child still needs the meds. There is an

obvious abnormality causing the seizure. And, if the seizure still occurs,

then that abnormality is still there and actively interfering with the

child's brain physiology.

And tegretol is a particularly gentle medicine (compared to the affects of

others). So, I would not try to rush off. Let the brain heal itself, if

possible. And, if the child is still taking HBOT, let the child finish the

HBOT.

The issues are too deep to fool around with in my mind.

Sorry, to politely disagree.

Best Wishes,

Ed Nemeth

At 08:23 AM 8/31/2002 -0500, you wrote:

>I would go very slow, much slower and at lower increments than what the doc

>recommend and expect withdrawal seizures, don't panic if you see more sz and

>increase the drug level, but ride it out a few days and see if it

>stabilizes. I did not find Tegretol to be a difficult wean. I did find that

>she no longer had absence sz after she stopped taking Teg. I'm not sure, but

>would think HBOT would help. Good luck! Ellen

>

> Re: [ ] Question for the Group.....

>

> > Ellen, I am weaning Tegretol. Any words of advice to offer with that

> > particular one? Nate has failed 3 previous weans. But am noticing some

>days

> > are better than others.

> >

> > Starting this week, I will be getting him back into his HBOT chamber to

>see

> > if this helps him too.

> >

> > Hugs

> > Tammy & Nate

>

>_._._._._._._._._._._._._._._._._._._._._._._._._._._._._._._._._._._._._.

>Unrestricted downloads of 50+ pdf files on HBOT efficacy

>medicaid/files/

>

>Download your state EPSDT program

>http://www.hcfa.gov/medicaid/stateplan/Map.asp by doing a search on the

>word " ameliorate " . State Medicaid websites

>http://www.medi-cal.ca.gov/RelSites_Oth_States.asp . Medicaid waiver

>programs: http://www.geocities.com/HotSprings/Villa/1029/medicaid.html

>

>Find a hyperbaric clinic http://www.netnet.net/mums/hbolist.htm

>

>HBOT can save billions of dollars and millions of heartaches. Subscribe to

> by sending a blank email to

>mailto:medicaid-subscribe

>

>Unsubscribe? Click here mailto:medicaid-unsubscribe .

>

September 2, 2002

My son had his first seizure at 9 months. When he had another one at about 2

years old, he was put on phenolbarital. He stayed on that until he was seizure

free, at 5 years old. After that, he had no seizure activity for years. By the

way, he is severely involved with cerebral palsy. When he was 13, I took him for

a long-put-off appointment with a neurologist and she said that as he entered

puberty, there was a chance that he would develope seizures again. Believe it or

not, 3 days later, he had a major grand mal seizure and continued to have them

periodically for years. At that time, they ran his first MRI and that's when we

were told that his brain damage was consistant with having had a stroke in

utero, somewhat explaining the severity of his cerebral palsy, when his

premature birth had some complications but not enough to warranty this severity.

Anyway, he's now 20 and one month ago, they ran another EEG, which in 1997 shows

significant seizure activity. After 120 HBOT treatments, last month they saw no

seizure activity at all. We were in the process of switching medication from

depakote to topamax because of his weight gain, but in 6 months, if he's had no

seizures, we will discuss weaning him off that and see what happens. The

neurologist says there's a 50/50 chance of seizures recurring and he can't

attribute the change in seizures to HBOT. One, the depakote may be controlling

the seizures, two, he may have outgrown them, like he grew into them, and three,

there have been no double-blind, controlled studies as to whether HBOT helps

with seizures. He has another patient doing HBOT with no improvements, but he's

still interested in our experience. He just has to spout out the controlled

study garbage, even with my arguments otherwise. I think it's just a matter of

time before we're all proven right. I'm expecting our court judgement any day,

ruling in our favor. My point in entering this discussion, is that as they grow,

kids can grow into or out of seizure activity, some of it related to hormones.

So if they are seizure free now, it doesn't mean they will always be so. The

brain is very complicated. But at least HBOT offers us a hope of healing. Not

just the control of medications.