Re: [MedicaidforHDOT] Medical Question

August 14, 2003

The decrease in muscle tone is all about a decrease in spasticity, and

being less spastic is a good thing; however, in the case of your daughter,

her dysfunctional spasticity has apparently been splinting her airway.

There could also be issues of undeveloped muscles that never were called

upon for head weight bearing because of other muscles being spastic.

Essentially, this is where an experienced pediatric physiatrist would need

to intervene and help her transition her musculature to a life without so

much spasticity. The obvious immediate need for same is her airway issue.

She may need a brace to assure than she does not have hypoxic spells or

you will see a regression of the gains you just made.

Also, the last six or so treatments in any block of 40 are icing on the

cake so to say, so do not worry too much about missing them. Your

treatment goal now is to address airway stability.

KP Stoller, MD, FAAP

Assistant Clinical Prof, UNM HSC Dept Pediatrics

Simply Hyperbarics

www.simplyhyperbarics.com

> My daughter is ten years old, weighs about 50 pounds (23.3 kg) and has

> severe CP. She has spastic quad CP and a GT. She does not sit or roll

> and has poor head control. She is dependent for all of her care. She

> is not an oral feeder but does have a good cough.

> However, she does " pool " her saliva and unless her chin is somewhat

> tucked her breathing sounds " wet. " She began HBOT the second week of

> June and her overall tone has decreased markedly. She has increased

> shoulder flexion and horizontal abduction and at times improved elbow

> extension. She has better external rotation in her hips and knee

> extension. Her torso has always had less tone than her extremities and

> now markedly so with improved thoracic extension (although mostly

> passive). Her pelvis moves better and seems more separate from her

> torso.

>

> The only thing that has not improved is her breathing. She has

> always done this in the past but now even more so will extend her neck

> and make awful sounds when she is breathing. I can reposition her head

> so that she sounds OK but now that she is moving more it is more

> difficult to keep her in position. I do not think she has

> increased secretions.

>

> My question: If her overall tone has decreased, is she losing tone in

> perhaps her trachea also and/or the muscles in her neck that

> control swallowing? Today will be her 35th dive and I have pretty much

> decided that tomorrow will be her last. It bugs me not to

> complete the 40 dives, I want her to have the full benefit from the O2.

> I plan to see how she is in October and begin the dives again. Has

> anyone else had experience with this? I talked to her PT and she

> believes that she is simply having to relearn these skills. But is she

> safe? Thank you in advance for your help.

>

> Lynn

> Mom to Mia and Diamond

> HBOT at Hyperbaric Healing Institute in KC, MO

>

> PS: If anyone knows of someone who could answer my question but is not

> on this list, please forward this message or e-mail me

> privately. Thank you again.

>

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

> Join the International Hyperbaric Medical Association

> http://www.hyperbaricmedicalassociation.org/forms/Friends_of_IHMA_Join.pdf

>

> Unrestricted downloads of 50+ pdf files on HBOT efficacy

> medicaid/files/ ,

> HDO-documentation/files/ and

> http://www.drneubauerhbo.com/papers.htm

>

> 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

>

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> mailto:medicaid-unsubscribe .

>

August 14, 2003

Lynn,

My daughter had no head control (her tone started and ended at her

lowest vertebra) with no developmental changes for 2 years. She would

choke on everything she drank, even if very thick with thick-it.

We did HBOT and her swallowing control improved within the first 3 days

where she could drink a think liquid without choking! During the next year

(100 HBOT's) her head control moved up to her lower/middle shoulder blades.

Of course, this helped her in many ways.

I have to believe that Dr. Stoller is correct when he states that your

daughter had brilliantly adapted her abilities to use the spasticity in

order to function " normally " . HBOT should have specifically removed that

spasticity and she now has to adapt again.

The key thing to focus on now si to help her to learn to use her newly

gained freedom of movement, and to learn to help herself absent spasticity.

Right now is a very good time to let her lie on the floor and reach and

grab and play with toys; to get more OT/PT' to do general movement

exercises at home; and to give her assistance in doing things correctly in

the hopes that your very smart little girl with adapt her skills to her

" new body " .

I cannot give you much more specifics than that, but I think this will be

helpful. Also, don't forget to keep using the nutritional

supplements. Your daughter's brain will keep moving forward for months

post HBOT. She will need the nutritional supplements to best take

advantage of those changes.

Best Regards,

Ed Nemeth

At 08:39 AM 8/14/2003, you wrote:

>My daughter is ten years old, weighs about 50 pounds (23.3 kg) and

>has severe CP. She has spastic quad CP and a GT. She does not sit

>or roll and has poor head control. She is dependent for all of her

>care. She is not an oral feeder but does have a good cough.

>However, she does " pool " her saliva and unless her chin is somewhat

>tucked her breathing sounds " wet. " She began HBOT the second week of

>June and her overall tone has decreased markedly. She has increased

>shoulder flexion and horizontal abduction and at times improved elbow

>extension. She has better external rotation in her hips and knee

>extension. Her torso has always had less tone than her extremities

>and now markedly so with improved thoracic extension (although mostly

>passive). Her pelvis moves better and seems more separate from her

>torso.

>

>The only thing that has not improved is her breathing. She has

>always done this in the past but now even more so will extend her

>neck and make awful sounds when she is breathing. I can reposition

>her head so that she sounds OK but now that she is moving more it is

>more difficult to keep her in position. I do not think she has

>increased secretions.

>

>My question: If her overall tone has decreased, is she losing tone

>in perhaps her trachea also and/or the muscles in her neck that

>control swallowing? Today will be her 35th dive and I have pretty

>much decided that tomorrow will be her last. It bugs me not to

>complete the 40 dives, I want her to have the full benefit from the

>O2. I plan to see how she is in October and begin the dives again.

>Has anyone else had experience with this? I talked to her PT and she

>believes that she is simply having to relearn these skills. But is

>she safe? Thank you in advance for your help.

>

>Lynn

>Mom to Mia and Diamond

>HBOT at Hyperbaric Healing Institute in KC, MO

>

>PS: If anyone knows of someone who could answer my question but is

>not on this list, please forward this message or e-mail me

>privately. Thank you again.

>

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

>Join the International Hyperbaric Medical Association

>http://www.hyperbaricmedicalassociation.org/forms/Friends_of_IHMA_Join.pdf

>

>Unrestricted downloads of 50+ pdf files on HBOT efficacy

>medicaid/files/ ,

>HDO-documentation/files/ and

>http://www.drneubauerhbo.com/papers.htm

>

>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 .

>

August 14, 2003

Dear Lynn ,

My daughter isa will be ten next week . She is the same weight as your daughter

..

I actually have my own steel hyperbaric chamber that can go up as high as I

want . I believe HBO is indispensable in improving the quality of life of my

brain injured daughter . I am over 500 sessions , did the first 80 sessions in a

clinic in UK and saw great results , but Isa would regress every time I stop HBO

and get back home . Because I live in Gambia in west Africa , we decided to get

our own chamber and continue HBO at home . Isa needed HBO almost every day to

keep her rigidity from crawling back , help her with eating and sleeping . and I

though we'll be doing it for the rest of her life . Till I started a special

rehabilitation program with her .

HBO helps bringing more oxygen to the brain. However, with this program we

are working on rebuilding a proper structure and restoring my daughter's

capacity to fully use her own respiratory system so that oxygen intake would

not depend on outside device whose benefits whether we want it or not diminished

everytime we discontinued HBO .

We are having good results with it and would love to share it with you or

anybody else interested .

Love

Viviane

From: Ed Nemeth

medicaid

Sent: Thursday, August 14, 2003 7:47 PM

Subject: Re: [MedicaidforHDOT] Medical Question