Re: Re: Why I joined this group.

[Guest guest]

Cassie,

If you go to youtube.com and do a search for hyperbaric therapy, you will find

the Curt video as well as some others.

Sent from my Verizon Wireless BlackBerry

[ ] Re: Why I joined this group.

Cassie, Have you seen the video of Curt ? The teenage that was

in a horrific car accident. He could not walk,talk, or hold his head

up. The Dr. told his mother take him home we have done all we can

do.This mother took him to a DR. that does HBOT treatmens and this

DR. video taped Curt's progress to show the old Dr. that with HBOT

there can be much improvement. Now curt is walking, and talking. My

own experience with my 13 yr old son. My son is Down Syndrome,

Autistic, and non-verbal. Two years ago he got cellulitis (STaph)

infection of the face and head. My son was unrecognizible. He looked

like he had elephant man syndrome. My son had not been the same since

then. We had an open wound on his head that no dermatologist, wound

care specialist, pediatrician etc could heal.After the 1st treatment

I locked myself out the house where we were staying and my son who

could not follow instructions let me into the house. He was sitting

down and I was yelling through and open window let me in. My son

then got up and went over to the door and let me in. After just 3

treatments my son whom did not want me to wash his head then started

letting me. He started doing the sign language sign for more and he

was previously tactile defensive so he would never try sign

language.We did 40 HBOT treatments and not the wound has healed and

it is nice and flat. The soar was lumpy but not any more. If you have

a wound that will not heal insurance will usually pay for it. My son

seems more cognitive and makes better eye contact. I do not want to

give false hope but the improvements take time but you will see them.

Good luck Cyndi B

>

> Josh & I have been together for 7 years, married for almost 4, and

have

> our son Carson Mac. He turned 2 in July. This is the story of what

> happened on February 10th, 2007.

> My son Carson was backed over by my grandfathers car in our

diveway. He

> received a closed head TBI and by the grace of god survived the

past 8

> months in PIcU, rehab, therapy & 2 brain surgeries. I came here

looking

> for answers on pediatric brain research. I have never heard of

HBOT,

> however upon finding this group I searched HBOT and found a place

in

> Tulsa, OK (thats just a couple hour drive). I also checked this out

on

> the website and it appears it may help my son to recover from his

brain

> injusry. Just wondering about this since i have exhausted all

efforts

> and we are currently running out of therapy benefits. I'd

appreciate

> any kind of help anyone can offer. Thanks so much. Cassie Alley

>

[Guest guest]

That's great. Dr. Harch is so nice. I called him once and spoke to him. My

daughter's CP is more of a mild PVL. Her greatest weaknesses have been cognitive

and developmental delay.I wanted to know when you stop doing hbot. I told him we

had done 120 over 6 yrs. He just said be careful. I would like to know if people

see improvement in finer detail such as cognitive, hand writing, and social

development. We just did a long term eeg and she is now coming off keppra. She

had been on 750x3 and was reduced to 500 x2. I decided we don't need to go off

so slowly. I have tapered it to 250 x2  and now to 250 x1 and will discontinue

when we run out. She is more energetic but I don't see cognitive improvement and

will probably do more hbot in the summer. Sue

From: <cynthiamiltonburns@...>

Subject: [ ] Re: Why I joined this group.

medicaid

Date: Sunday, October 19, 2008, 9:53 PM

Cassie, Have you seen the video of Curt ? The teenage that was

in a horrific car accident. He could not walk,talk, or hold his head

up. The Dr. told his mother take him home we have done all we can

do.This mother took him to a DR. that does HBOT treatmens and this

DR. video taped Curt's progress to show the old Dr. that with HBOT

there can be much improvement. Now curt is walking, and talking. My

own experience with my 13 yr old son. My son is Down Syndrome,

Autistic, and non-verbal. Two years ago he got cellulitis (STaph)

infection of the face and head. My son was unrecognizible. He looked

like he had elephant man syndrome. My son had not been the same since

then. We had an open wound on his head that no dermatologist, wound

care specialist, pediatrician etc could heal.After the 1st treatment

I locked myself out the house where we were staying and my son who

could not follow instructions let me into the house. He was sitting

down and I was yelling through and open window let me in. My son

then got up and went over to the door and let me in. After just 3

treatments my son whom did not want me to wash his head then started

letting me. He started doing the sign language sign for more and he

was previously tactile defensive so he would never try sign

language.We did 40 HBOT treatments and not the wound has healed and

it is nice and flat. The soar was lumpy but not any more. If you have

a wound that will not heal insurance will usually pay for it. My son

seems more cognitive and makes better eye contact. I do not want to

give false hope but the improvements take time but you will see them.

Good luck Cyndi B

>

> Josh & I have been together for 7 years, married for almost 4, and

have

> our son Carson Mac. He turned 2 in July. This is the story of what

> happened on February 10th, 2007.

> My son Carson was backed over by my grandfathers car in our

diveway. He

> received a closed head TBI and by the grace of god survived the

past 8

> months in PIcU, rehab, therapy & 2 brain surgeries. I came here

looking

> for answers on pediatric brain research. I have never heard of

HBOT,

> however upon finding this group I searched HBOT and found a place

in

> Tulsa, OK (thats just a couple hour drive). I also checked this out

on

> the website and it appears it may help my son to recover from his

brain

> injusry. Just wondering about this since i have exhausted all

efforts

> and we are currently running out of therapy benefits. I'd

appreciate

> any kind of help anyone can offer. Thanks so much. Cassie Alley

>

__________________________________________________

[Guest guest]

Dear Sue,

I suspect the answer to your question is, nobody knows.  If I had a daughter

with CP and had seen the degree of improvement you describe, I would be

delighted at her progress, and I would certainly be inclined to continue HBOT

therapy, again, as Dr. Harch recommended, being careful to get HBOT from

appropriate and safe sources.  As you have seen progress, you certainly have

every right to hope for continued improvement.

Will there be a ceiling at some point, where she stops progressing?  No one

knows the answer to that.  You will probably have to judge that for yourself,

but I think, and this is just my theoretical opinion, that it is more likely

that with most people with anoxic brain injury, or traumatic brain injury,

treated with HBOT, there will be an initial steep rate of improvement, followed

by a more gradual slower degree of improvement.

My reason for thinking this is based on common sense.  With initial HBOT

treatment, the damage that can easily be reversed by oxygen getting to that area

of the brain is going to be reversed, with obvious signs of improvement. But the

brain is highly complex in the way that parts communicate with each other, and

getting that system better is probably much harder, and probably takes longer,

and I think that is one reason why initial improvement is seen, and then why

further improvement is slower and more subtle---anyway, from what I've been able

to read about the brain, that's my best explanation. 

The theory as to why HBOT works has to do in part with healing of injured, but

dormant cells, surrounding areas where there is dead brain tissue.  There are

probably many other factors at work which medical science has not yet

chronicalled, and I've done some reading of the literature, and as a family

practice physician, understand it to some degree, but I'm by no means an

expert--just more knowledgeable than most physicians, who as you know generally

dismiss it out of hand, without actually bothering to read the literature!

But it does appear that the increased oxygen allows healing that might not

otherwise have occurred, and certainly speeds the rate of healing,  and

additionally, promotes new vascularization, and also has an anti-inflammatory

effect, which is important, according to Dr. Rossignol, who I interviewed, and

who sees mostly children with autism, but others as well.  To summarize, the

benefits are complex, and how any one individual will benefit, or how they will

progress, is of course dependent on the unique deficits that child has suffered,

and many other complex variables. 

To the degree it is available, I think it is important to combine HBOT with

speech, occupational, and physical therapy, as I think that using, exercising

the brain as it heals promotes remodeling and generally speaking, the brain

works best by being exercised.

The connections between the motor skills and the brain, for example, require

using the muscles, giving feed-back to the brain, which can then correct for

better functioning.  Speech therapists work on the cognitive aspect of the

brain--they don't just work on speech.  They also use mental exerciss to

encourage the brain to begin to improve in the area of cognitive function.

Of course, these therapies are only as good as the people who deliver the

services, and the degree of expert therapy available is widely variable. It's my

opinion that the system is broken, because I have seen therapists who believe

that improvement only can be seen for the first year after an accident, for

example, in the case of traumatic brain injury, and so they won't even try.  My

dad had a stroke, and he got PT for something like one or two months, and then

he was shoved out the door with the pronouncement of having achieved " maximum

medical improvement. "

Maximum medical improvement, by definition, is the date on which Medicare,

through some bureaucratic decision, has decided to cut off payment. 

It is generally acknowledged in medicine, even by those doctors who don't

" believe " in HBOT, that it takes neurons at least six months to heal.  So on the

face of it, Medicare's policy is flawed.  Many hundreds of thousands of people

who have had strokes are tossed out of treatment centers before they could

possibly reach maximum medical improvement, and go home or go to assisted living

or nursing homes crippled, for the rest of their lives, because of these insane

policies based on reimbursement rather than medical fact.

Just one woman's opinion.  I commend you for your persistence, Sue.  Keep your

chin up, and keep asking questions, reading, becoming informed. 

I actually feel hopeful.  I think there are new break-throughs in understanding

the brain every week. 

Read The Scientific American magazine, " Mind, " which I recommend to everyone who

reads these postings.  I'm amazed by the wealth of new information from ongoing

research about the brain.  I think we will be able to treat many of the

conditions we are concerned with on this list much more successfully in the

future.

The lag time between what the researchers know and what practicing clinical

physicians and therapists know, is unfortunately too great.  That is the part

where we need to advocate for our families and ourselves.

Best regards,

From: <cynthiamiltonburns>

Subject: [ ] Re: Why I joined this group.

medicaid

Date: Sunday, October 19, 2008, 9:53 PM

Cassie, Have you seen the video of Curt ? The teenage that was

in a horrific car accident. He could not walk,talk, or hold his head

up. The Dr. told his mother take him home we have done all we can

do.This mother took him to a DR. that does HBOT treatmens and this

DR. video taped Curt's progress to show the old Dr. that with HBOT

there can be much improvement. Now curt is walking, and talking. My

own experience with my 13 yr old son. My son is Down Syndrome,

Autistic, and non-verbal. Two years ago he got cellulitis (STaph)

infection of the face and head. My son was unrecognizible. He looked

like he had elephant man syndrome. My son had not been the same since

then. We had an open wound on his head that no dermatologist, wound

care specialist, pediatrician etc could heal.After the 1st treatment

I locked myself out the house where we were staying and my son who

could not follow instructions let me into the house. He was sitting

down and I was yelling through and open window let me in. My son

then got up and went over to the door and let me in. After just 3

treatments my son whom did not want me to wash his head then started

letting me. He started doing the sign language sign for more and he

was previously tactile defensive so he would never try sign

language.We did 40 HBOT treatments and not the wound has healed and

it is nice and flat. The soar was lumpy but not any more. If you have

a wound that will not heal insurance will usually pay for it. My son

seems more cognitive and makes better eye contact. I do not want to

give false hope but the improvements take time but you will see them.

Good luck Cyndi B

>

> Josh & I have been together for 7 years, married for almost 4, and

have

> our son Carson Mac. He turned 2 in July. This is the story of what

> happened on February 10th, 2007.

> My son Carson was backed over by my grandfathers car in our

diveway. He

> received a closed head TBI and by the grace of god survived the

past 8

> months in PIcU, rehab, therapy & 2 brain surgeries. I came here

looking

> for answers on pediatric brain research. I have never heard of

HBOT,

> however upon finding this group I searched HBOT and found a place

in

> Tulsa, OK (thats just a couple hour drive). I also checked this out

on

> the website and it appears it may help my son to recover from his

brain

> injusry. Just wondering about this since i have exhausted all

efforts

> and we are currently running out of therapy benefits. I'd

appreciate

> any kind of help anyone can offer. Thanks so much. Cassie Alley

>

____________ _________ _________ _________ _________ __

[Guest guest]

Thanks We did suit therapy and hbot one summer. She is doing very well

physically. In spring we went to the Grand Canyon and she climbed very well and

did stairs in Mamouth cave well before. I know she has made great progress. She

still has some limits cognitively and takes adderall for ADHD. I would like to

do my best to see improvement. After last summer hbot and rowing camp, I saw

better sequencing, appetite and organizational skills. She does not have

behavoir problems but does not have any friends. She interacts wit soccer and at

school but has some limits. We do a social group therapy on Saturday evenings

and her handwriting has improved greatly. I may try to save to do 80 next summer

to see if I see greater improvement. Whenever we eliminate one battle, it seems

to magnify the current existing battle. I'm trying vitamins for concentration in

addition to the adderall. I feel the urge to do all we can now. Sue

From: <cynthiamiltonburns >

Subject: [ ] Re: Why I joined this group.

medicaid

Date: Sunday, October 19, 2008, 9:53 PM

Cassie, Have you seen the video of Curt ? The teenage that was

in a horrific car accident. He could not walk,talk, or hold his head

up. The Dr. told his mother take him home we have done all we can

do.This mother took him to a DR. that does HBOT treatmens and this

DR. video taped Curt's progress to show the old Dr. that with HBOT

there can be much improvement. Now curt is walking, and talking. My

own experience with my 13 yr old son. My son is Down Syndrome,

Autistic, and non-verbal. Two years ago he got cellulitis (STaph)

infection of the face and head. My son was unrecognizible. He looked

like he had elephant man syndrome. My son had not been the same since

then. We had an open wound on his head that no dermatologist, wound

care specialist, pediatrician etc could heal.After the 1st treatment

I locked myself out the house where we were staying and my son who

could not follow instructions let me into the house. He was sitting

down and I was yelling through and open window let me in. My son

then got up and went over to the door and let me in. After just 3

treatments my son whom did not want me to wash his head then started

letting me. He started doing the sign language sign for more and he

was previously tactile defensive so he would never try sign

language.We did 40 HBOT treatments and not the wound has healed and

it is nice and flat. The soar was lumpy but not any more. If you have

a wound that will not heal insurance will usually pay for it. My son

seems more cognitive and makes better eye contact. I do not want to

give false hope but the improvements take time but you will see them.

Good luck Cyndi B

>

> Josh & I have been together for 7 years, married for almost 4, and

have

> our son Carson Mac. He turned 2 in July. This is the story of what

> happened on February 10th, 2007.

> My son Carson was backed over by my grandfathers car in our

diveway. He

> received a closed head TBI and by the grace of god survived the

past 8

> months in PIcU, rehab, therapy & 2 brain surgeries. I came here

looking

> for answers on pediatric brain research. I have never heard of

HBOT,

> however upon finding this group I searched HBOT and found a place

in

> Tulsa, OK (thats just a couple hour drive). I also checked this out

on

> the website and it appears it may help my son to recover from his

brain

> injusry. Just wondering about this since i have exhausted all

efforts

> and we are currently running out of therapy benefits. I'd

appreciate

> any kind of help anyone can offer. Thanks so much. Cassie Alley

>

____________ _________ _________ _________ _________ __