Re: Question for the Group.....

[Guest guest]

Tammy,

Could you tell me what MACK's ear plugs are? And where could I find

them? Do they work different than other ear plugs? I'll try the noises,

too!

Thanks!

[Guest guest]

My son, , also has a startle reflex. I must admit to not ever

having thought about ear plugs. It sounds like a good idea for certain

times of the day and occasions. is easily startled yet has come to

no longer be afraid of these startling sounds. He often smiles now after

showing his startle reflex and they no longer cascade into a seizure type

of behaviour. His vision is impaired and he is very attuned to sound. It

makes sense to show that these loud sounds won't harm him. When

startles and shoots his hands in the air, we have made a game of it and he

expects me to hug and tease him when this happens and it seems to me that

the fear has been replaced with laughter on his part.

Snow

At 06:15 PM 9/2/02 EDT, you wrote:

>,

>Mack's Ear plugs are putty type ear plugs, You place them in the outer ear,

>and form them to the ear itself. They come in BRIGHT FLORESCENT ORANGE for

>kids, and clearish white for adults. I get mine at the local pharmacy, I am

>sure you can get them at just about ANY pharmacy. They are over the counter,

>not via prescription. Check in the area where you would for ear drops and

>nose plugs for swimmers.

>

>Another thing I ALSO do is put the earphone type protective hearing muffs on

>Nate. (He is hypersensitive to the vaccume cleaner, the lawnmower, but

>amazingly, NOT the dishwasher or blender.)

>

>To help desensitize to sounds, you may want to get an AIR horn, the

>kind that uses compressed air at ball games? Blow that behind him so he

>cannot see you doing it. Get 2 block of wood and bang those right behind his

>head so he cannot see you doing it. What you SHOULD see if him startle, and

>over time, he will only flinch, then blink, then only blink or startle to

the

>first few, then nothing as he becomes desensitized. Pots and pans are

another

>great NOISE maker. You could do this for about 45 sessions a day, for 30

>seconds at a time, and see what happens. These are all things I did with

>Nate, and it HAS helped.

>

>Hugs

>Tammy & Nate

>

>

>

[Guest guest]

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

>rely on parental explanations of what the child is doing.

Well, this is amazing.

So the neurologists are more than willing to rely on parental observations

to prescribe and engage in the experimental and investigational use of

nonFDA approved anti-convulsants--but are not willing to rely on parental

observations of improvements via Hyperbaric Oxygen Therapy.

They'll believe us when we tell them our child is worse but won't believe

us when we tell them our children are better.

Pediatric neurologists won't prescribe a treatment that heals the source of

brain-injury--but are more than willing to prescribe meds that can only

perpetuate the brain-injury.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

" Trust in the LORD with all your heart and lean not on your own

understanding; in all your ways acknowledge him, and he will make your

paths straight. Do not be wise in your own eyes; fear the LORD and shun

evil. " [Prov. 3:5-7]

Freels

2948 Windfield Circle

Tucker, GA 30084-6714

770/491-6776 (phone and fax)

509/275-1618 (efax, sends fax as email attachment)

mailto:dfreels@...

http://www.freelanceforum.org/content/portfolio.asp?ID=195

[Guest guest]

Have you sought sensory integration or auditory

integration therapy. You can get him a head set to

wear in times of overstimulation. My daughter has

classmates who wear headsets while doing their class

work. Sue

--- " W. Snow " <snowflakes@...> wrote:

> My son, , also has a startle reflex. I must

> admit to not ever

> having thought about ear plugs. It sounds like a

> good idea for certain

> times of the day and occasions. is easily

> startled yet has come to

> no longer be afraid of these startling sounds. He

> often smiles now after

> showing his startle reflex and they no longer

> cascade into a seizure type

> of behaviour. His vision is impaired and he is very

> attuned to sound. It

> makes sense to show that these loud sounds won't

> harm him. When

> startles and shoots his hands in the air, we have

> made a game of it and he

> expects me to hug and tease him when this happens

> and it seems to me that

> the fear has been replaced with laughter on his

> part.

> Snow

>

> At 06:15 PM 9/2/02 EDT, you wrote:

> >,

> >Mack's Ear plugs are putty type ear plugs, You

> place them in the outer ear,

> >and form them to the ear itself. They come in

> BRIGHT FLORESCENT ORANGE for

> >kids, and clearish white for adults. I get mine at

> the local pharmacy, I am

> >sure you can get them at just about ANY pharmacy.

> They are over the counter,

> >not via prescription. Check in the area where you

> would for ear drops and

> >nose plugs for swimmers.

> >

> >Another thing I ALSO do is put the earphone type

> protective hearing muffs on

> >Nate. (He is hypersensitive to the vaccume cleaner,

> the lawnmower, but

> >amazingly, NOT the dishwasher or blender.)

> >

> >To help desensitize to sounds, you may want

> to get an AIR horn, the

> >kind that uses compressed air at ball games? Blow

> that behind him so he

> >cannot see you doing it. Get 2 block of wood and

> bang those right behind his

> >head so he cannot see you doing it. What you SHOULD

> see if him startle, and

> >over time, he will only flinch, then blink, then

> only blink or startle to

> the

> >first few, then nothing as he becomes desensitized.

> Pots and pans are

> another

> >great NOISE maker. You could do this for about 45

> sessions a day, for 30

> >seconds at a time, and see what happens. These are

> all things I did with

> >Nate, and it HAS helped.

> >

> >Hugs

> >Tammy & Nate

> >

> >

> >[Non-text portions of this message have been

> removed]

> >

> >

> >

>

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

> >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 .

>

> >

> >

[Guest guest]

If I hadn't lived through this plus talked to many other moms who have seen

the same thing, I wouldn't believe it either. Depakote, for example, made my

daughter's sz more intense. Instead of the nocturnal sz she was having, on

Depakote she had her sz during the say and they would slam her to the floor

with great intensity. She would pop blood vessels around her eyes and neck

with each sz. She also had horrible rages that had no apparent trigger and

would last for 3 hours. Each time we lowered her dose, she would have a sz a

few days later until it was nearly all gone. But she continued to have

residual " Depakote " sz up to 6 months after she was no longer taking this

drug.

Truthfully, when we weaned Tegretal, we were pretty early in the sz game, so

we did it according to the neuro's schedule. But while she was on Teg, she

had 100s of absence sz daily. Once we weaned, we did not see any sz, but we

saw a lot of behaviors, plus night time pacing and generalized trembling.

This lasted for about 2 weeks. we've never seen another absence sz since

pulling the Teg 8 yrs ago.

Phenobarbital (the first time) was fine until she started having complex

partial sz. Those, btw, stopped as soon as the Pheno was weaned. But during

the weaning, she had more sz and we thought she was getting worse, so went

went on a course of trying various drug combos. I now wish someone had told

me to wait and see if her little body didn't stabilize on its own. So when I

did hear other parents talking about this, I heeded their warnings and every

wean we've done since then has been very slow and trouble free. We expect

the withdrawal sz on the given day, ride it out and continue with the wean

and she has done fine.

But my daughter has never been sz free on an drug. Perhaps I would feel

differently if she had. She is also not a candidate for surgery as her

injury is diffuse. She has, depending on which drug she's been on, had tonic

clonic, complex partial, absence, and myoclonic sz. She has gone status a

few times, Todd's paralysis, and she has had spiritual encounters a few

times. What I have seen is that she does just as well off drugs, often is

better than when she is taking them. I do not believe there is a magic pill

out there. The HBOT reduced her sz by 50% and we've done other therapies

that have helped some as well. We are currently working on getting her pH in

balance and this is helping her too. I still maintain that if anyone is

taking a particular drug and they start seeing new sz types, it could be the

drug itself and if they determine it is the drug and they try to wean it and

see more sz, it could be drug withdrawal. These drugs are all highly

addicting...

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 .

> >

> >

[Guest guest]

Very well said, thank you Dr. Fojgel. I have found in recent years that the

anti-epileptic drugs were making my daughter more acidic and, coincidently,

her seizures worsen the longer she remains on any drug therapy (we've tried

many). By working to get her minerals in balance, which in turn balances the

acid/base, I see much better seizure control. The immune system gets

stronger which also lends the same result.

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

..

>

>

[Guest guest]

LOLOL...well, they won't believe you if you tell them the drugs are making

your child worse. They always put in the chart " mom says... " . Actually there

is a lot of money in the vagal nerve stimulator, so they're pushing that one

a lot. Ellen

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

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

> >rely on parental explanations of what the child is doing.

>

> Well, this is amazing.

>

> So the neurologists are more than willing to rely on parental observations

> to prescribe and engage in the experimental and investigational use of

> nonFDA approved anti-convulsants--but are not willing to rely on parental

> observations of improvements via Hyperbaric Oxygen Therapy.

>

> They'll believe us when we tell them our child is worse but won't believe

> us when we tell them our children are better.

>

> Pediatric neurologists won't prescribe a treatment that heals the source

of

> brain-injury--but are more than willing to prescribe meds that can only

> perpetuate the brain-injury.

>

>

> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

> " Trust in the LORD with all your heart and lean not on your own

> understanding; in all your ways acknowledge him, and he will make your

> paths straight. Do not be wise in your own eyes; fear the LORD and shun

> evil. " [Prov. 3:5-7]

>

>

> Freels

> 2948 Windfield Circle

> Tucker, GA 30084-6714

> 770/491-6776 (phone and fax)

> 509/275-1618 (efax, sends fax as email attachment)

> mailto:dfreels@...

>

> http://www.freelanceforum.org/content/portfolio.asp?ID=195

>

>

>

>

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

> 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

..

>

>

[Guest guest]

>she has had spiritual encounters a few

>times.

What were the spiritual encounters?

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

" Trust in the LORD with all your heart and lean not on your own

understanding; in all your ways acknowledge him, and he will make your

paths straight. Do not be wise in your own eyes; fear the LORD and shun

evil. " [Prov. 3:5-7]

Freels

2948 Windfield Circle

Tucker, GA 30084-6714

770/491-6776 (phone and fax)

509/275-1618 (efax, sends fax as email attachment)

mailto:dfreels@...

http://www.freelanceforum.org/content/portfolio.asp?ID=195

[Guest guest]

She had a very bad hallucinogenic episode the last time we used Diastat (an

emergency drug used at home to break seizure clusters before they go into

status). It lasted over 72 hours and she never slept but talked to and

laughed with people the rest of us couldn't see, told us she was dying. She

faded in and out of lucidity. That time she saw angels, who she says were

dressed in red-violet gowns. After someone named (red dress, black

hair)came a lay down next to her, she finally started coming out of the drug

fog and started saying that she was not going to die. She does not remember

, but does remember the angels surrounding her.

She's seen Jesus a few times as well, but not recently, and not necessarily

drug induced. She definitely has a connection.

Once, while in a new church where we had never been, she walked up to some

people and asked them to pray for her to stop her sz. Of all the people she

could have selected, she found a couple who's grown child used to have sz.

It touched them profoundly. That was when I realized that no matter what

happens, whether we ever get the sz under control, whether she ever gets

past her 7 yr old cognitive level, she's going to be okay because she is

part of the bigger picture. She has touched so many lives with her struggles

and her accomplishments. It (the chronic illness) really never has been mine

to control. That gives me peace. Ellen

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

> >she has had spiritual encounters a few

> >times.

>

> What were the spiritual encounters?

>

>

> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

> " Trust in the LORD with all your heart and lean not on your own

> understanding; in all your ways acknowledge him, and he will make your

> paths straight. Do not be wise in your own eyes; fear the LORD and shun

> evil. " [Prov. 3:5-7]

>

>

> Freels

> 2948 Windfield Circle

> Tucker, GA 30084-6714

> 770/491-6776 (phone and fax)

> 509/275-1618 (efax, sends fax as email attachment)

> mailto:dfreels@...

>

> http://www.freelanceforum.org/content/portfolio.asp?ID=195

>

>

>

>

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

> 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

..

>

>

[Guest guest]

Ellen- do you know where the focal point of her

seizures are or what type she has. The reality in life

is that we are not in control- we only believe that we

are and so many people have different comforts to

believe that we are in control. One who has seizures

learns the truth earlier and more profoundly. I had

rt. temporal lobe epilepsy until I had surgery. I was

told by my mother that I was too trusting of others.

When you have a seizure-you don't know who will be

your help and it is always such a blessing that others

have come to my assistance. Do you know the focal

point of her seizures.30% of rt.temporal lobe patients

worsen in mid life. Has she had an mri? There is

always the possibility of a structural abnormality

that can be removed. Sue

--- Ellen <EBELLEY@...> wrote:

> She had a very bad hallucinogenic episode the last

> time we used Diastat (an

> emergency drug used at home to break seizure

> clusters before they go into

> status). It lasted over 72 hours and she never slept

> but talked to and

> laughed with people the rest of us couldn't see,

> told us she was dying. She

> faded in and out of lucidity. That time she saw

> angels, who she says were

> dressed in red-violet gowns. After someone named

> (red dress, black

> hair)came a lay down next to her, she finally

> started coming out of the drug

> fog and started saying that she was not going to

> die. She does not remember

> , but does remember the angels surrounding

> her.

>

> She's seen Jesus a few times as well, but not

> recently, and not necessarily

> drug induced. She definitely has a connection.

>

> Once, while in a new church where we had never been,

> she walked up to some

> people and asked them to pray for her to stop her

> sz. Of all the people she

> could have selected, she found a couple who's grown

> child used to have sz.

> It touched them profoundly. That was when I realized

> that no matter what

> happens, whether we ever get the sz under control,

> whether she ever gets

> past her 7 yr old cognitive level, she's going to be

> okay because she is

> part of the bigger picture. She has touched so many

> lives with her struggles

> and her accomplishments. It (the chronic illness)

> really never has been mine

> to control. That gives me peace. Ellen

> Re: [ ] Question for the

> Group.....

>

>

> > >she has had spiritual encounters a few

> > >times.

> >

> > What were the spiritual encounters?

> >

> >

> >

>

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

> > " Trust in the LORD with all your heart and lean

> not on your own

> > understanding; in all your ways acknowledge him,

> and he will make your

> > paths straight. Do not be wise in your own eyes;

> fear the LORD and shun

> > evil. " [Prov. 3:5-7]

> >

> >

> > Freels

> > 2948 Windfield Circle

> > Tucker, GA 30084-6714

> > 770/491-6776 (phone and fax)

> > 509/275-1618 (efax, sends fax as email attachment)

> > mailto:dfreels@...

> >

> >

>

http://www.freelanceforum.org/content/portfolio.asp?ID=195

> >

> >

> >

> >

> >

>

_._._._._._._._._._._._._._._._._._._._._._._._._._._._._._._._._._._._._.

> > 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

> .

> >

> >

[Guest guest]

Thanks for the auditory integration therapy advice. He seems to have good

control on succumbing to overstimulation these days. He does love music

however and will keep this in mind if it becomes necessary.

Thanks again,

Dave Snow

On Mon, 2 Sep 2002 18:19:45 -0700 (PDT) Sue DuPart <gaduparts@...>

wrote:

> Have you sought sensory integration or auditory

> integration therapy. You can get him a head set

> to

> wear in times of overstimulation. My daughter

> has

> classmates who wear headsets while doing their

> class

> work. Sue

> --- " W. Snow " wrote:

> > My son, , also has a startle reflex.

> I must

> > admit to not ever

> > having thought about ear plugs. It sounds

> like a

> > good idea for certain

> > times of the day and occasions. is

> easily

> > startled yet has come to

> > no longer be afraid of these startling

> sounds. He

> > often smiles now after

> > showing his startle reflex and they no longer

> > cascade into a seizure type

> > of behaviour. His vision is impaired and he

> is very

> > attuned to sound. It

> > makes sense to show that these loud sounds

> won't

> > harm him. When

> > startles and shoots his hands in the air, we

> have

> > made a game of it and he

> > expects me to hug and tease him when this

> happens

> > and it seems to me that

> > the fear has been replaced with laughter on

> his

> > part.

> > Snow

> >

> > At 06:15 PM 9/2/02 EDT, you wrote:

> > >,

> > >Mack's Ear plugs are putty type ear plugs,

> You

> > place them in the outer ear,

> > >and form them to the ear itself. They come

> in

> > BRIGHT FLORESCENT ORANGE for

> > >kids, and clearish white for adults. I get

> mine at

> > the local pharmacy, I am

> > >sure you can get them at just about ANY

> pharmacy.

> > They are over the counter,

> > >not via prescription. Check in the area

> where you

> > would for ear drops and

> > >nose plugs for swimmers.

> > >

> > >Another thing I ALSO do is put the earphone

> type

> > protective hearing muffs on

> > >Nate. (He is hypersensitive to the vaccume

> cleaner,

> > the lawnmower, but

> > >amazingly, NOT the dishwasher or blender.)

> > >

> > >To help desensitize to sounds, you may

> want

> > to get an AIR horn, the

> > >kind that uses compressed air at ball games?

> Blow

> > that behind him so he

> > >cannot see you doing it. Get 2 block of wood

> and

> > bang those right behind his

> > >head so he cannot see you doing it. What you

> SHOULD

> > see if him startle, and

> > >over time, he will only flinch, then blink,

> then

> > only blink or startle to

> > the

> > >first few, then nothing as he becomes

> desensitized.

> > Pots and pans are

> > another

> > >great NOISE maker. You could do this for

> about 45

> > sessions a day, for 30

> > >seconds at a time, and see what happens.

> These are

> > all things I did with

> > >Nate, and it HAS helped.

> > >

> > >Hugs

> > >Tammy & Nate

> > >

> > >

> > >[Non-text portions of this message have been

> > removed]

> > >

> > >

> > >

> >

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

> > >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

> .

> >

> > >

> > >

[Guest guest]

Thanks Sue, she is not a candidate for surgery as her injury is diffuse due

to viral encephalitis (caused by vaccine). She had a slim chance for

survival, beat those odds, but has intractable sz. She has had MRIs, EEGS,

Extended Monitoring EEGS (5 days in the hospital), countless labs to rule

out vitamin, amino acid, mineral , essential fatty acid deficiencies,

metabolic problems, etc. She did very well on the Ketogenic diet until

another incident (vaccine) caused more damage and altered her metabolism and

we could no longer get her to burn ketones and lost all sz control. Then we

put her back on meds, which made the sz worse. Then we did HBOT with

improved her condition tremendously and we weaned meds. But she still had

poor control, she we agreed to try meds again. She again got worse, so we

weaned again and relied on Diastat. Then she had a bad episode from that, so

out of fear we put her back on Phenobarbital, which controls her the best.

But now its been 9 months and we're starting to see ugly beasts (sz that

contort her body and cause her limbs to flail), so we're lowering her dose

again to wean within a year from now. But we're doing mineral therapy as

well. Since all that with the keto diet, her pH was way off. What I can't

understand is why the diet, which makes the body run in an acid state,

controlled the sz, but then when she was off the diet her body reverted to

the acid state but it did not control her sz. Anyway, in recent years, we've

been seeing the opposite effect: the more acidic her body becomes, the more

sz she has. We have had great difficulty getting her body into a more

alkaline state. Within the past few months, I've found someone who is

helping me to achieve this and Hannah is doing quite well. The

Phenobarbital, while it helps her for a while, makes her body more acid (and

smelly) and then the sz become more intense and more frequent. Ellen

Re: [ ] Question for the

> > Group.....

> >

> >

> > > >she has had spiritual encounters a few

> > > >times.

> > >

> > > What were the spiritual encounters?

> > >

> > >

> > >

> >

> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

> > > " Trust in the LORD with all your heart and lean

> > not on your own

> > > understanding; in all your ways acknowledge him,

> > and he will make your

> > > paths straight. Do not be wise in your own eyes;

> > fear the LORD and shun

> > > evil. " [Prov. 3:5-7]

> > >

> > >

> > > Freels

> > > 2948 Windfield Circle

> > > Tucker, GA 30084-6714

> > > 770/491-6776 (phone and fax)

> > > 509/275-1618 (efax, sends fax as email attachment)

> > > mailto:dfreels@...

> > >

> > >

> >

> http://www.freelanceforum.org/content/portfolio.asp?ID=195

> > >

> > >

> > >

> > >

> > >

> >

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

> > > 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

> > .

> > >

> > >

[Guest guest]

,

You are exactly correct!

Congratulations on your son's improvements! (such a long journey!) Best

wishes to him and you!

Ed Nemeth

At 11:20 PM 9/1/2002 -0600, you wrote:

>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.

>

>

>

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

>

>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

> >

> >

> >

[Guest guest]

Dr. Fojgel,

Good Points. We parents would like to understand more of your thoughts

with this issue.

Specifically, with your statement:

" That is why, in any dosage modification, as you say, you must proceed

very, very gently. "

What would you recommend to a parent / patient who has a seizure while

weaning them from the meds. If changes can bring seizures on, then how

would you evaluate this change and the seizure and what would you recommend

and what would be your basis for that recommendation?

Would you suggest holding back weaning the child? Continue the

weaning? Slow the weaning down? Or, what information would you need to

make a recommendation to that parent/ patient?

Thanks

Ed Nemeth

At 04:28 AM 9/2/2002 -0300, you wrote:

>Dear friends,

>seizures are only the visible effect of an abnormality,

>either of function or of form.

>If there is a seizure, it may mean that

>the ability of the brain to balance and redistribute

>an electrical surcharge has been exceeded.

>A synchronization of discharges ensues = seizure.

>

>With an anticonvulsant or a neuroleptic remedy

>you may acheive a degree of equilibrium,

>that can be disbalanced often, with little effort.

>Metabolic changes (acid/base balance), fever, stress,

>abnormal stimuli (strobo ligts, sleep deprivation, noise),

>excessive food intake, fluids retention (kidneys),

>dental treatments, are some of the eliciting factors.

>I am sure that after calling your attention to those,

>any of you could remember some relevant anecdote.

>But changes in medication dosage may also bring about seizures,

>until the next balance is attained and established.

>That is why, in any dosage modification, as you say,

>you must proceed very, very gently.

>

>Brain injured patients have a central nervous system hypersensitive

>to many stimuli, including hyperoxia.

>It might be important to prevent those factors from overwhelming

>the injured brain into deploying periodical or single electrical storms.

>The other concurrent causes must be taken care of.

>Few neurologists consider extra-cerebral causes as operatively important

>as to treat or correct them, though.

>Hyperbarics affect positively not only the brain, but several other

>peripheral factors,

>but not all of them.

>Best regards.

>Ignacio Fojgel, M.D

>Buenos Aires, Argentina

>

>Ed Nemeth wrote:

>

> > 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 .

>

>

[Guest guest]

Ellen and Everyone,

I have to say I am still amazed at how blessed we have been in managing

and her issues. Listening to some of your seizure stories really

brings this home.

Compared to most parents/kids, 's seizure care has been very

straight forward, and manageable.

What is remarkable, is that she had so much brain damage, and yet, her

seizures were so limited. I do not know how this can be duplicated with

another child's care. I believe we were just very fortunate with this issue.

Best Wishes!

Ed Nemeth

At 09:14 PM 9/2/2002 -0500, you wrote:

>If I hadn't lived through this plus talked to many other moms who have seen

>the same thing, I wouldn't believe it either. Depakote, for example, made my

>daughter's sz more intense. Instead of the nocturnal sz she was having, on

>Depakote she had her sz during the say and they would slam her to the floor

>with great intensity. She would pop blood vessels around her eyes and neck

>with each sz. She also had horrible rages that had no apparent trigger and

>would last for 3 hours. Each time we lowered her dose, she would have a sz a

>few days later until it was nearly all gone. But she continued to have

>residual " Depakote " sz up to 6 months after she was no longer taking this

>drug.

>

>Truthfully, when we weaned Tegretal, we were pretty early in the sz game, so

>we did it according to the neuro's schedule. But while she was on Teg, she

>had 100s of absence sz daily. Once we weaned, we did not see any sz, but we

>saw a lot of behaviors, plus night time pacing and generalized trembling.

>This lasted for about 2 weeks. we've never seen another absence sz since

>pulling the Teg 8 yrs ago.

>

>Phenobarbital (the first time) was fine until she started having complex

>partial sz. Those, btw, stopped as soon as the Pheno was weaned. But during

>the weaning, she had more sz and we thought she was getting worse, so went

>went on a course of trying various drug combos. I now wish someone had told

>me to wait and see if her little body didn't stabilize on its own. So when I

>did hear other parents talking about this, I heeded their warnings and every

>wean we've done since then has been very slow and trouble free. We expect

>the withdrawal sz on the given day, ride it out and continue with the wean

>and she has done fine.

>But my daughter has never been sz free on an drug. Perhaps I would feel

>differently if she had. She is also not a candidate for surgery as her

>injury is diffuse. She has, depending on which drug she's been on, had tonic

>clonic, complex partial, absence, and myoclonic sz. She has gone status a

>few times, Todd's paralysis, and she has had spiritual encounters a few

>times. What I have seen is that she does just as well off drugs, often is

>better than when she is taking them. I do not believe there is a magic pill

>out there. The HBOT reduced her sz by 50% and we've done other therapies

>that have helped some as well. We are currently working on getting her pH in

>balance and this is helping her too. I still maintain that if anyone is

>taking a particular drug and they start seeing new sz types, it could be the

>drug itself and if they determine it is the drug and they try to wean it and

>see more sz, it could be drug withdrawal. These drugs are all highly

>addicting...

>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 .

> > >

> > >

[Guest guest]

Ellen- what an experience you have developed. I wonder

of the ketogenic diet makes them physically lethargic

and slows down the body. Have you tried the drug

keppra- it's new and the first studie of using it as

secondary drug for partial seizures showed control in

30percent of the children .My daughter has occipital

lobe seizures-from traumatic birth and is controlled

by it. Would calcium carbonate help with the alkaline

state-tums? What epilepsy treatment facility did you

go to. I hope that her spiritual experiences will

outweigh the pain and headaches that result from the

seizure. I am sure you rely on prayer and the gospel

of the Cananite woman. Sue

--- Ellen <EBELLEY@...> wrote:

> Thanks Sue, she is not a candidate for surgery as

> her injury is diffuse due

> to viral encephalitis (caused by vaccine). She had a

> slim chance for

> survival, beat those odds, but has intractable sz.

> She has had MRIs, EEGS,

> Extended Monitoring EEGS (5 days in the hospital),

> countless labs to rule

> out vitamin, amino acid, mineral , essential fatty

> acid deficiencies,

> metabolic problems, etc. She did very well on the

> Ketogenic diet until

> another incident (vaccine) caused more damage and

> altered her metabolism and

> we could no longer get her to burn ketones and lost

> all sz control. Then we

> put her back on meds, which made the sz worse. Then

> we did HBOT with

> improved her condition tremendously and we weaned

> meds. But she still had

> poor control, she we agreed to try meds again. She

> again got worse, so we

> weaned again and relied on Diastat. Then she had a

> bad episode from that, so

> out of fear we put her back on Phenobarbital, which

> controls her the best.

> But now its been 9 months and we're starting to see

> ugly beasts (sz that

> contort her body and cause her limbs to flail), so

> we're lowering her dose

> again to wean within a year from now. But we're

> doing mineral therapy as

> well. Since all that with the keto diet, her pH was

> way off. What I can't

> understand is why the diet, which makes the body run

> in an acid state,

> controlled the sz, but then when she was off the

> diet her body reverted to

> the acid state but it did not control her sz.

> Anyway, in recent years, we've

> been seeing the opposite effect: the more acidic her

> body becomes, the more

> sz she has. We have had great difficulty getting her

> body into a more

> alkaline state. Within the past few months, I've

> found someone who is

> helping me to achieve this and Hannah is doing quite

> well. The

> Phenobarbital, while it helps her for a while, makes

> her body more acid (and

> smelly) and then the sz become more intense and more

> frequent. Ellen

> Re: [ ] Question for the

> > > Group.....

> > >

> > >

> > > > >she has had spiritual encounters a few

> > > > >times.

> > > >

> > > > What were the spiritual encounters?

> > > >

> > > >

> > > >

> > >

> >

>

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

> > > > " Trust in the LORD with all your heart and

> lean

> > > not on your own

> > > > understanding; in all your ways acknowledge

> him,

> > > and he will make your

> > > > paths straight. Do not be wise in your own

> eyes;

> > > fear the LORD and shun

> > > > evil. " [Prov. 3:5-7]

> > > >

> > > >

> > > > Freels

> > > > 2948 Windfield Circle

> > > > Tucker, GA 30084-6714

> > > > 770/491-6776 (phone and fax)

> > > > 509/275-1618 (efax, sends fax as email

> attachment)

> > > > mailto:dfreels@...

> > > >

> > > >

> > >

> >

>

http://www.freelanceforum.org/content/portfolio.asp?ID=195

> > > >

> > > >

> > > >

> > > >

> > > >

> > >

> >

>

_._._._._._._._._._._._._._._._._._._._._._._._._._._._._._._._._._._._._.

> > > > 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:

> > >

>

=== message truncated ===

__________________________________________________

[Guest guest]

My thought is that your child may have an elevated ammonia level. Sometimes

this can happen and cause exacerbation of the seizure activity and lethargy

and/or personality changes. It may also give the seizures a different

appearance. This problem can easily be corrected with Lactulose(a sugary

syrup that draws the ammonia out of the system) and protein reduction in the

diet. You might ask to have your child's ammonia level checked.

Dr. Cheryl -Bruce, MD

The Center

For Exceptional Children and Families, Inc.

P.O. Box 1036

Stockbridge, GA 30281

http://www.gregorycenter.org

cheryl@...

1-650-533-2094

[Guest guest]

Keppra has a known side effect of psychotic episodes, so no don't want to go

there. Nearly every drug makes her mean (like Dr. Jekyl and Mr. Hyde).

Actually we're doing quite well right now and unless things were to be

worsening we will stay the course. We will go for more HBOT when able. We

are correcting the acidic state with Biochemics and she looks better now

than she has for 3 years. Thanks, though. Ellen

Re: [ ] Question for the

> > > > Group.....

> > > >

> > > >

> > > > > >she has had spiritual encounters a few

> > > > > >times.

> > > > >

> > > > > What were the spiritual encounters?

> > > > >

> > > > >

> > > > >

> > > >

> > >

> >

> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

> > > > > " Trust in the LORD with all your heart and

> > lean

> > > > not on your own

> > > > > understanding; in all your ways acknowledge

> > him,

> > > > and he will make your

> > > > > paths straight. Do not be wise in your own

> > eyes;

> > > > fear the LORD and shun

> > > > > evil. " [Prov. 3:5-7]

> > > > >

> > > > >

> > > > > Freels

> > > > > 2948 Windfield Circle

> > > > > Tucker, GA 30084-6714

> > > > > 770/491-6776 (phone and fax)

> > > > > 509/275-1618 (efax, sends fax as email

> > attachment)

> > > > > mailto:dfreels@...

> > > > >

> > > > >

> > > >

> > >

> >

> http://www.freelanceforum.org/content/portfolio.asp?ID=195

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > >

> > >

> >

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

> > > > > 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:

> > > >

> >

> === message truncated ===

>

>

> __________________________________________________

>

[Guest guest]

Ellen,

I couldn't agree with you more. It is not uncommon on the medications to see

the seizure patterns change as well. Sometimes they even develop into Lennox

Gestault with the appearance of multiple different kinds of seizures that are

hard to control with any kind of medication. I have seen Keppra work very

well with these seizures, but have used it for short periods only to bring

the multiple seizures back into one or two specific types and then began

slowly weaning back until all have resolved. Increasing water intake during

this time seems to help as well.

Dr. Cheryl Bruce, MD

The Center

For Exceptional Children and Families, Inc.

P.O. Box 732

Belmont, CA 94002-0732

http://www.gregorycenter.org

cheryl@...

1-650-591-1181

[Guest guest]

If you fail a wean, you usually weaned too fast. Wean slowly! When you hit

a point that seizures kick up again, go back up again only very slightly,

hold for three to four days and begin descending again.

Dr. Cheryl Bruce, MD

The Center

For Exceptional Children and Families, Inc.

" Where growth begins! "

P.O. Box 732

Belmont, CA 94002-0732

http://www.gregorycenter.org

cheryl@...

1-650-591-1181

[Guest guest]

Dear friends,

sorry for the delay in answering this one.

It is my tenet that many types of seizures do not originate in the brain,

but only are processed by same.

Cerebral injuries are necessary for a seizure to occur, but not sufficient.

Three " external " factors are very important: digestion, circulation and fluids

retention.

-Digestion should be watched, and eventually corrected.

Feeding should repetitive and in small quantities, not to burden the stomach.

Autonomic nervous system signals may arise from that area that

may deploy the cerebral conditions for a seizure.

Intestines are to be kept working, by the use of mild natural laxatives,

fiber, fruits and vegetables, etc.

Pork and derivates and any blood (because of excessive heme-iron)

should be banned from the diet,

milk,cheese and other dairy products are to be watched and eventually reduced

(constipation and sub-clinical intolerance)

-Circulation is also controlled by the autonomic nervous system.

Belladonna preparations may a good way to stabilize the circulatory factor of

seizures,

and also fever, incidentally.

-Fluid retention is a common occurrence, due to subtle renal and circulatory

disbalances.

Perspiration (hot baths, heat) and urination should be encouraged.

Natural diuretics, such as horsetail may be used. Systemic enzymes might be of

help.

-For the brain proper, you can use biological preparations, or homeopathic

remedies,

both quite synergistic with hyperbarics.

Arnica preparations are particularly relevant in brain, and also in any

traumatic conditions.

Weaning from medication must be done slowly,

and in combination with those other measures.

The best medication is not necessarily the newest or more expensive one.

Weaning and medication exchange is better done under your neuro's supervision,

but they might not be there when problems arise, I know...

Go back to the latest effective dosage for a while,

try to correct any factor, and proceed again.

Do not feel you are experimenting: each person is different,

remedies introduce additional differences,

and some dose changes may mess things temporarily.

We all are unique individuals, N=1 experiments of Nature,

in possesion of an inbuilt healing capacity that needs to be encouraged,

not impeded by incorrect factors, remedies and dosage.

Best regards.

Ignacio Fojgel, M.D.

Maimónides University

Buenos Aires, Argentina

Ed Nemeth wrote:

> Dr. Fojgel,

>

> Good Points. We parents would like to understand more of your thoughts

> with this issue.

>

> Specifically, with your statement:

>

> " That is why, in any dosage modification, as you say, you must proceed

> very, very gently. "

>

> What would you recommend to a parent / patient who has a seizure while

> weaning them from the meds. If changes can bring seizures on, then how

> would you evaluate this change and the seizure and what would you recommend

> and what would be your basis for that recommendation?

>

> Would you suggest holding back weaning the child? Continue the

> weaning? Slow the weaning down? Or, what information would you need to

> make a recommendation to that parent/ patient?

>

> Thanks

>

> Ed Nemeth

>

> At 04:28 AM 9/2/2002 -0300, you wrote:

> >Dear friends,

> >seizures are only the visible effect of an abnormality,

> >either of function or of form.

> >If there is a seizure, it may mean that

> >the ability of the brain to balance and redistribute

> >an electrical surcharge has been exceeded.

> >A synchronization of discharges ensues = seizure.

> >

> >With an anticonvulsant or a neuroleptic remedy

> >you may acheive a degree of equilibrium,

> >that can be disbalanced often, with little effort.

> >Metabolic changes (acid/base balance), fever, stress,

> >abnormal stimuli (strobo ligts, sleep deprivation, noise),

> >excessive food intake, fluids retention (kidneys),

> >dental treatments, are some of the eliciting factors.

> >I am sure that after calling your attention to those,

> >any of you could remember some relevant anecdote.

> >But changes in medication dosage may also bring about seizures,

> >until the next balance is attained and established.

> >That is why, in any dosage modification, as you say,

> >you must proceed very, very gently.

> >

> >Brain injured patients have a central nervous system hypersensitive

> >to many stimuli, including hyperoxia.

> >It might be important to prevent those factors from overwhelming

> >the injured brain into deploying periodical or single electrical storms.

> >The other concurrent causes must be taken care of.

> >Few neurologists consider extra-cerebral causes as operatively important

> >as to treat or correct them, though.

> >Hyperbarics affect positively not only the brain, but several other

> >peripheral factors,

> >but not all of them.

> >Best regards.

> >Ignacio Fojgel, M.D

> >Buenos Aires, Argentina

> >

> >Ed Nemeth wrote:

> >

> > > 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

> > > >

> > > >