Re: 1.27 vs 1.5 - Dr. Harch

[Guest guest]

>I am brand new to this site. Is Medicaid paying for HBOT? I am actually

>in the process of applying for it. One of my therapy patients works at

>the medicaid office, and states she will try and help me atleast get

>medicaid for my 1 yr old twin daughter for 1 year. She has IS, CP, and

>CVI. Thanks, Gandy

,

Which state are you in?

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

" 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]

>Mattt which I worked

>Since I have recently relocated and I am in boxes, I do not have the

>references to give you.

Dr. -Bruce, MD,

Your address was in Stockbridge, Georgia but now you're in California. Can

you discuss your decision-making process on how you decided to move?

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

>

>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

In an earlier post [23 Aug 2002] you stated " I am a

Partners-In-Policymaking graduate of the Georgia Council on Developmental

Disabilities. I am interested in your advocacy efforts on HBOT. "

Some other questions:

1. Is the Georgia Council on Developmental Disabilities the same

thing/organization as the Governor's Council on Developmental Disabilities?

2. How productive/effective did you find the Georgia Council on

Developmental Disabilities to be?

3. Did you ever discuss Hyperbaric Oxygen Therapy with them?

4. What was their response?

5. What changes would you suggest to improve performance at the Georgia

Council on Developmental Disabilities?

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

" 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 was treated at 1.5, her initial 40 were done by dr. jo feingold, who

>runs a very professional set-up. I don't think the problem was with the

>treating center.

>

>On the question of dosage, does anyone have any theoretical thoughts on

>why 1.27 would be more appropriate than 1.5? If true, this would seem

>to be rather significant. I would love to hear a meaty reply. Dr.

>Harch, are you out there?

>

>On the question of improvement. This is a very difficult question. For

>me, improvement is defined as " consistent developmental acceleration

>above the statistical norm " . Using this definition I have not seen

>improvement in Alissa nor any of the other kids I have personally seen

>treated. Did the kids improve in general? Yes, of course they did,

>but these kids will improve. Many factors will allow these kids to

>improve. We have to give these kids more credit than we do.

Matt--the pediatric neurologists told us Jimmy would improve on his own if

we did Speech Therapy, Occupational Therapy, and Physical Therapy. After

two years of six therapy sessions a week, we saw no improvement.

None.

We started patterning just before his 3rd birthday and he started talking

for the first time 2 months later. A month later he crawled for the first

time, 3 feet--which the neurologists said he would never do.

Improve on their own. Not my kid. It didn't happen. The same docs now

declare his gains " would have happened anyway " .

I trusted them once and nothing happened. I'll never trust them again.

When he got in a hyperbaric chamber his gains skyrocketed. Is he walking

yet? No. Is he sitting up yet? No. Will he ever sit up or walk. Yes, I

believe so.

>With some data it does not have to be my opinion against yours.

Matt, hyperbaric oxygen therapy is the first and only thing that's come

down the pike that can be unequivocally (sp?) and objectively demonstrated

to change and improve brain function in cp via before/after SPECT-scan

imaging. What I have seen hyperbaric oxygen do is maximize the potential

that's there that can't be maximized any other way.

The federal Medicaid law for children specifically and intentionally

empowers our children to undeniable access to treatment that has

demonstrated improvements in 90+% of every child who's gotten it.

Further, and this is key, once the government *has* to pay for HBOT, 100's

of millions of dollars--if not billions--will be committed to research to

find out the full potential of Hyperbaric Oxygen Therapy.

However, none of this will happen unless we as parents maximize the

incredible opportunity we have been given that doesn't require the

signature or approval of pediatric neurology.

I think HBOT is the first step toward finding a cure, and until my son

Jimmy can take his first step, forcing the state to take the steps they've

promised to take is the best thing we can do.

I encourage you to do the same.

Then we'll know why 1.27 ATA is sometimes more appropriate than 1.5 ATA,

and we'll also know a lot of other things too.

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

" 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]

Matt,

I think an important point is the age Alyssa was treated (4 months). At

that age, her CP symptoms weren't really demonstrated... .so, you could not

tell from her changes that the HBOT actually helped her or not. Spasticity

and others symptoms simply were not fully demonstrated yet (these symptoms

develop from the neural scarring, demyelination, etc. that interfere with

neuronal control and development).

The only way would have been to look at the SPECT scans to determine the

changes in metabolic levels of different brain areas. Still, even that

cannot tell you what she really did or did not gain.

But, you can look at other children who have roughly similar injuries who

have not had HBOT and see where they are and where they are going.

RE: 1.27 verses 1.5 ATA ..... good question! It appears that 1.5 is

fairly optimal for many patients.... but, 1.3 can work.... started

her HBOT at 1.25 ATA for the first 20 sessions or so, and we saw great

gains. We continued at 1.5 ATA and we saw continued gains. We thought we

would try 1.3 again, and her gains weren't as pronounced as 1.5 ATA so we

went back to 1.5ATA. What does that mean for Alyssa..... probably not

much. Just info. to reflect on.

Best wishes,

Ed

At 11:24 AM 9/5/2002 -0500, you wrote:

>She was treated at 1.5, her initial 40 were done by dr. jo feingold, who

>runs a very professional set-up. I don't think the problem was with the

>treating center.

>

>On the question of dosage, does anyone have any theoretical thoughts on

>why 1.27 would be more appropriate than 1.5? If true, this would seem

>to be rather significant. I would love to hear a meaty reply. Dr.

>Harch, are you out there?

>

>On the question of improvement. This is a very difficult question. For

>me, improvement is defined as " consistent developmental acceleration

>above the statistical norm " . Using this definition I have not seen

>improvement in Alissa nor any of the other kids I have personally seen

>treated. Did the kids improve in general? Yes, of course they did,

>but these kids will improve. Many factors will allow these kids to

>improve. We have to give these kids more credit than we do.

>

>As another twist to improvement, I monitor 37 listserves related to

>brain injury and alternative therapies. On all these lists, parents

>feel that their kids are improving... yes, similar stories to those seen

>on this list. So either all alternative therapies work or something

>else is in place to explain this general trend of reported improvement.

>

>

>We as a community need to begin by defining an effective measurement of

>improvement. There are arguably more professionals on this group than

>any other. Can you guys take up the challenge to work on such a

>measurement and begin measuring yourselves. There are standard

>functional tests that exist, they are far from perfect but better than

>andedotes and video tape. With some data it does not have to be my

>opinion against yours.

>

>

> [ ] Re: Dystonia

>

>

>

>

>Dear Matt,

> Hi! I am so sorry to hear about your daughter and your

>disappointing experience with HBOT. Do you happen to know the depth she

>was treated at? The reason I ask is because it would appear, based on

>limited experience, that the dystonic brain is extremely sensitive to

>HBOT. When I received treatment above 1.5ata, it greatly exacerbated my

>symptoms. When I am treated at 1.5 and below, I have wonderful carry

>over. Currently, I have many symptoms which have been kept at bay for

>over a year and a half. But, again, being hypersensitive, I can not get

>to 40 treatments at once. The longest I have been able to go is 33

>before I start to show signs of toxicity. My last round of treatments,

>I

>could only go to 25. I believe I have had 115 treatments so far. I was

>to the point of being evaluated for an intrathecal baclofen pump, prior

>to HBOT. I have completely stopped one medication and cut my baclofen

>in

>half.

>

> The only doctor I know of in the US who has been successful in

>treating Dystonia is Dr. Harch in Louisiana. He was helpful in

>suggesting the correct level for a little girl with Dystonia in another

>country. I believe her depth was 1.27 ata. She too, seems to be

>hypersensitive to higher levels. A few days ago, I received an e-mail

>from a doctor in the UK who has treated several with Dystonia. He too

>speaks of lower levels.

>

> Anyway, I would be more than happy to speak with you. I will be

>sending you my phone number.

>

> Joanne

>

>

>________________________________________________________________

>GET INTERNET ACCESS FROM JUNO!

>Juno offers FREE or PREMIUM Internet access for less!

>Join Juno today! For your FREE software, visit:

>http://dl.www.juno.com/get/web/. <http://dl.www.juno.com/get/web/.>

>

>

>

[Guest guest]

I am brand new to this site. Is Medicaid paying for HBOT? I am actually in the

process of applying for it. One of my therapy patients works at the medicaid

office, and states she will try and help me atleast get medicaid for my 1 yr old

twin daughter for 1 year. She has IS, CP, and CVI. Thanks, Gandy

Re: [ ] 1.27 vs 1.5 - Dr. Harch

>She was treated at 1.5, her initial 40 were done by dr. jo feingold, who

>runs a very professional set-up. I don't think the problem was with the

>treating center.

>

>On the question of dosage, does anyone have any theoretical thoughts on

>why 1.27 would be more appropriate than 1.5? If true, this would seem

>to be rather significant. I would love to hear a meaty reply. Dr.

>Harch, are you out there?

>

>On the question of improvement. This is a very difficult question. For

>me, improvement is defined as " consistent developmental acceleration

>above the statistical norm " . Using this definition I have not seen

>improvement in Alissa nor any of the other kids I have personally seen

>treated. Did the kids improve in general? Yes, of course they did,

>but these kids will improve. Many factors will allow these kids to

>improve. We have to give these kids more credit than we do.

Matt--the pediatric neurologists told us Jimmy would improve on his own if

we did Speech Therapy, Occupational Therapy, and Physical Therapy. After

two years of six therapy sessions a week, we saw no improvement.

None.

We started patterning just before his 3rd birthday and he started talking

for the first time 2 months later. A month later he crawled for the first

time, 3 feet--which the neurologists said he would never do.

Improve on their own. Not my kid. It didn't happen. The same docs now

declare his gains " would have happened anyway " .

I trusted them once and nothing happened. I'll never trust them again.

When he got in a hyperbaric chamber his gains skyrocketed. Is he walking

yet? No. Is he sitting up yet? No. Will he ever sit up or walk. Yes, I

believe so.

>With some data it does not have to be my opinion against yours.

Matt, hyperbaric oxygen therapy is the first and only thing that's come

down the pike that can be unequivocally (sp?) and objectively demonstrated

to change and improve brain function in cp via before/after SPECT-scan

imaging. What I have seen hyperbaric oxygen do is maximize the potential

that's there that can't be maximized any other way.

The federal Medicaid law for children specifically and intentionally

empowers our children to undeniable access to treatment that has

demonstrated improvements in 90+% of every child who's gotten it.

Further, and this is key, once the government *has* to pay for HBOT, 100's

of millions of dollars--if not billions--will be committed to research to

find out the full potential of Hyperbaric Oxygen Therapy.

However, none of this will happen unless we as parents maximize the

incredible opportunity we have been given that doesn't require the

signature or approval of pediatric neurology.

I think HBOT is the first step toward finding a cure, and until my son

Jimmy can take his first step, forcing the state to take the steps they've

promised to take is the best thing we can do.

I encourage you to do the same.

Then we'll know why 1.27 ATA is sometimes more appropriate than 1.5 ATA,

and we'll also know a lot of other things too.

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

" 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]

Mattt which I worked

Since I have recently relocated and I am in boxes, I do not have the

references to give you. I would encourage you to do some investigation of

the literature on your own though. There is data out there quantified by PET

Scans. Althou I had some basic issues with quality of care at the center at

which I worked, to their merit I commend them for allowing me to quanitify my

results on each child with sequential PET Scans that clearly demonstrated

more rapid improvement than would be expected by logical progression. Again,

not every therapy works for every child. I would encourage you to invest

your time into seeking other avenues for your child.

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]

Yes , that was a typo. The Georgia Council is the Governor's Council.

For your purposes, the fastest way to access the council is to apply for the

Partner's In Policymaking class.

The council moves alot faster than alot of other bureaucratic organizations,

but it is a government agency, so it can be slow.

The Governor's Council does have some movers and shakers on it, so it is a

very progressive organization and is accomplishing some good things on the

advocacy front. It produces some strong advocates through the Partner's

program.

I had very minimal discussions with the Council regarding HBOT, because I was

hard at work on advocacy issues at the time regarding improving the special

education system and inclusion in the Georgia School systems, as well as

increased community inclusion. It was not that HBOT was less important, only

that you can just do so many things at once...sigh...

As to why I left Georgia, partially because I got frustrated. I came out of

systems that were much more progressive. After 7 years of advocating and

watching some other great advocates beating their heads upside stone walls

for barely moderate returns, I just became a little burned out. I decided

that I wanted more for my own child and wanted to expend my advocacy effort

in an area where I was more likely to be able to make a large enough impact

to cause some changes in the system. Then maybe I can bring that knowledge

back to Georgia. Georgia has made some great strides recently, but it

remains in the dark ages.

I moved to bring my child to the Bridge School. Gigi , a Governor's

Council Parner's graduate tried to bring this type of educational program to

Georgia, but basically closed the LINKS School down after it received no

support in Georgia. She now continues her program only as a homeschool

program to the benefit of her son Will and a handful of other children. It

is a sad statement that she received so little support for such a tremendous

program, in spite of all of the time and effort that she put into developing

it.

I am already finding a much more positive environment for my son here. I

guess that accounts for the large number of people with disabilities that I

am encountering in this area.

Since you remain in the Georgia arena however, I encourage you to become a

Partner and take your advocacy efforts for HBOT to them as your

Partner's graduation project.

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

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]

>Yes , that was a typo. The Georgia Council is the Governor's Council.

>

>For your purposes, the fastest way to access the council is to apply for the

>Partner's In Policymaking class.

How do I do that?

>I had very minimal discussions with the Council regarding HBOT,

Who did you talk to about it?

Did you ever speak with sen?

What was the response?

>I moved to bring my child to the Bridge School.

I've sent a pile of stuff on HBOT to them in hopes they would incorporate

it. I understand Ben Young has graduated. I've contacted his Mom and Dad,

I've even left them a couple of voice mails on their home phone about

hyperbaric oxygen, but I don't know if they've tried it.

I think there could be a lot of publicity and subsequent public interest if

a Ben Young received hyperbaric oxygen and clearly benefitted. Hey, if Dad

can buy the Lionel Train company for him, surely he'd be willing to get him

some extra oxygen.

If you meet them, tell them hello, and tell Dad I've always been a big fan

and would never compromise his privacy, but there's so much more that his

name could bring to this than my name ever will.

Especially when there are people out there like the UHMS and Georgia

Medicaid and Bernard Statland who are hell-bent on keeping our children on

the floor.

Just ask him to review the evidence and think about it.

>Gigi , a Governor's

>Council Parner's graduate tried to bring this type of educational program to

>Georgia, but basically closed the LINKS School down after it received no

>support in Georgia.

The 6+ year Will T. case vs. Georgia Medicaid was the forerunner to our

own. Mrs. has worked closely with FODAC (Friends of Disabled Adults

and Children, http://www.fodac.org) and last week they had a lengthy

pow-wow with numerous political candidates.

A primary topic of conversation was not only Hyperbaric Oxygen Therapy but

also Georgia Medicaid's consistent and persistent failure to provide

legally mandated services, i.e., the Will T. case--otherwise there would be

no need for the existence of FODAC.

We'll see.

>Since you remain in the Georgia arena however, I encourage you to become a

>Partner and take your advocacy efforts for HBOT to them as your

>Partner's graduation project.

I think I will.

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

" 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