HBOT

[Guest guest]

In a message dated 15/07/2005 08:22:00 GMT Daylight Time, erkrath@... writes:

The HBOT post from Jo has piqued my interest in this therapy again. Think I'm gonna look into this more seriously....

>>>Well ist way cheaper to do it here than in the US if you use an MS treatment centre - they only ask for donations, suggesting £10 per dive for Sam. I think Caroline (Scotland) is paying about the same.

What I need is for the Sussex chamber to help the local one at Sturminster NEwton (deepest Dorset) gain approval for treating under 16's and then I could just pop down the rad instead of driving 1.5 hours each way

We are going here

http://www.mssussex.com/

Sam will be the first kid with Autism, they usuallu do CP and TBI

Mandi x

[Guest guest]

In a message dated 15/07/2005 09:58:24 GMT Daylight Time, catherine.devereux@... writes:

when do you start your sessions - I hope they go well and I look forward to hearing your reports!!

>>>First dive on 29.7.05

Scarey (for me - I hate confined spaces especially in the summer) but I am sure Sam will be fine

Mandi x

[Guest guest]

Just checked the website out. I'd like to try this out for my daughter and myself. Ever since having my daughter, when I bend over, my brain feels as if it's going to explode...

Thanks for the info....

:-)))))))))))))))))

Re: HBOT

In a message dated 15/07/2005 08:22:00 GMT Daylight Time, erkrath@... writes:

The HBOT post from Jo has piqued my interest in this therapy again. Think I'm gonna look into this more seriously....

>>>Well ist way cheaper to do it here than in the US if you use an MS treatment centre - they only ask for donations, suggesting £10 per dive for Sam. I think Caroline (Scotland) is paying about the same.

What I need is for the Sussex chamber to help the local one at Sturminster NEwton (deepest Dorset) gain approval for treating under 16's and then I could just pop down the rad instead of driving 1.5 hours each way

We are going here

http://www.mssussex.com/

Sam will be the first kid with Autism, they usuallu do CP and TBI

Mandi x

[Guest guest]

Mandi,

when do you start your sessions - I hope they go well and I look forward to hearing your reports!!

Re: HBOT

In a message dated 15/07/2005 08:22:00 GMT Daylight Time, erkrath@... writes:

The HBOT post from Jo has piqued my interest in this therapy again. Think I'm gonna look into this more seriously....

>>>Well ist way cheaper to do it here than in the US if you use an MS treatment centre - they only ask for donations, suggesting £10 per dive for Sam. I think Caroline (Scotland) is paying about the same.

What I need is for the Sussex chamber to help the local one at Sturminster NEwton (deepest Dorset) gain approval for treating under 16's and then I could just pop down the rad instead of driving 1.5 hours each way

We are going here

http://www.mssussex.com/

Sam will be the first kid with Autism, they usuallu do CP and TBI

Mandi x

[Guest guest]

Mandi I wish you lots of luck, I am so very claustrophobic, I would have to pay someone else to go in lol, took my 10 yr old on the simulator at Bournemouth beach and pushed the panic button.

Vicky

[Guest guest]

Please keep us updated as i am i the exact same position as you. we

go for our first initial information session next week. I am

hesitant as to how my little guy will take it. did you have to buy

your own mask? or is this standard? Did they have a tv or anything

inside the chamber to keep them busy?? What do you do for an hour

with a child on your knee?? I know my son is going to go bonkers.

thanks

>

> Went for our " acclimitisation " session at the local HBOT. Very

glad

> we did - this is going to be a tough one. Tom went into the

chamber

> happily - it's a big round thing, like a diving bell or round

> submarine with portholes. Only thing lacking was sailors

>

> The noise is not the sort of clanging I expected but the noise of

> inhaling the oxygen. It does sound like a hugely amplified heavy

> breather. Tom was not keen - and we didn't kit him out this time,

> just let him watch Mark, mask fitted, wheezing away, with Tom

inside

> the chamber with him. The door closing was fine, the space itself

> was fine (it really is quite big and you can see out of the

> portholes!) but the creepy breathing (sorry Mark, nothing

personal)

> was not to his liking and what he'll be like with his own head in

> the PVC hood is anyone's guess.

>

> Managed to get him down to 8 foot (1.25) before Tom's fingers went

> into the ears and we stopped. Think getting him used to it will be

a

> slow, lengthy process. We'll keep you updated. Too good an

> opportunity to miss but Tom is the first autistic child they've

> treated so very much a journey of discovery for all of us!

>

> best

>

> Steph

>

[Guest guest]

We have been doing HBOT for several weeks now - two sessions per day

at the moment. Both our daughters N & B are now completely used to

it, and happily sit in the chamber (usually with my wife) for the

whole hour - N (10) just reads, whereas B (5) needs constant

distracting with things to do. As she is getting far more

interested in copying facial expressions, sounds, mouth movements

etc she can now be kept busy with that most of the time! I suspect

it may be harder with boys given their physical activity levels!!

The masks at our centre are sterilised each time so we don't have to

have our own. This chamber doesn't allow any electronic items in

the chamber - when we were at Dr Bradstreet's in Florida he provided

a portable DVD player and a range of DVDs.

By the way, we have been seeing good progress with B since the

chelation and HBOT got under way (offset when B was ill over

Christmas). In particular we had a first instance of pretend play

and spontaneous joking the other night - B was being tucked up in

bed for the night with a teddy (teddy in bed is also a new thing -

she has always refused to have one before) and we were

saying " Goodnight B, goodnight teddy " etc, when B suddenly pretended

that teddy was kicking off the covers. We started telling teddy

off, producing fits of giggles from B, tucked him back in, prompting

multiple repeats (at varying intervals) and huge giggles all round.

Amazing how little things like this seem so important when you've

waited so long!

Neil

> >

> > Went for our " acclimitisation " session at the local HBOT. Very

> glad

> > we did - this is going to be a tough one. Tom went into the

> chamber

> > happily - it's a big round thing, like a diving bell or round

> > submarine with portholes. Only thing lacking was sailors

> >

> > The noise is not the sort of clanging I expected but the noise

of

> > inhaling the oxygen. It does sound like a hugely amplified heavy

> > breather. Tom was not keen - and we didn't kit him out this

time,

> > just let him watch Mark, mask fitted, wheezing away, with Tom

> inside

> > the chamber with him. The door closing was fine, the space

itself

> > was fine (it really is quite big and you can see out of the

> > portholes!) but the creepy breathing (sorry Mark, nothing

> personal)

> > was not to his liking and what he'll be like with his own head

in

> > the PVC hood is anyone's guess.

> >

> > Managed to get him down to 8 foot (1.25) before Tom's fingers

went

> > into the ears and we stopped. Think getting him used to it will

be

> a

> > slow, lengthy process. We'll keep you updated. Too good an

> > opportunity to miss but Tom is the first autistic child they've

> > treated so very much a journey of discovery for all of us!

> >

> > best

> >

> > Steph

> >

>

[Guest guest]

Neil

where do you have your HBOT?

[Guest guest]

I think all the chambers differ slightly. There's nothing to do in

this one and you couldn't watch DVDs although you could listen to

music via the speakers. This one has a soft rubber collar that goes

over the neck (very tight) and then a clear plastic polythene closed

tunnel thing that goes over the head and the oxygen goes into. The

adults have rubber masks (like fighter pilots). no idea what he's

going to do for an hour. Keeping him still (you really can't move

about) is going to be a major challenge and we think we'll do a seat

belt as if he's traveling somewhere. But those aren't fitted - we'll

have to improvise. NOt really ideal for small (or large) wriggly

autistic children - but we'll have to find a way somehow.

> >

> > Went for our " acclimitisation " session at the local HBOT. Very

> glad

> > we did - this is going to be a tough one. Tom went into the

> chamber

> > happily - it's a big round thing, like a diving bell or round

> > submarine with portholes. Only thing lacking was sailors

> >

> > The noise is not the sort of clanging I expected but the noise

of

> > inhaling the oxygen. It does sound like a hugely amplified heavy

> > breather. Tom was not keen - and we didn't kit him out this

time,

> > just let him watch Mark, mask fitted, wheezing away, with Tom

> inside

> > the chamber with him. The door closing was fine, the space

itself

> > was fine (it really is quite big and you can see out of the

> > portholes!) but the creepy breathing (sorry Mark, nothing

> personal)

> > was not to his liking and what he'll be like with his own head

in

> > the PVC hood is anyone's guess.

> >

> > Managed to get him down to 8 foot (1.25) before Tom's fingers

went

> > into the ears and we stopped. Think getting him used to it will

be

> a

> > slow, lengthy process. We'll keep you updated. Too good an

> > opportunity to miss but Tom is the first autistic child they've

> > treated so very much a journey of discovery for all of us!

> >

> > best

> >

> > Steph

> >

>

[Guest guest]

Those are amazing things and that's exactly why I'm so keen to try

it (if Tom will let us...) yOu must be thrilled.

Steph x

> > >

> > > Went for our " acclimitisation " session at the local HBOT.

Very

> > glad

> > > we did - this is going to be a tough one. Tom went into the

> > chamber

> > > happily - it's a big round thing, like a diving bell or round

> > > submarine with portholes. Only thing lacking was sailors

> > >

> > > The noise is not the sort of clanging I expected but the noise

> of

> > > inhaling the oxygen. It does sound like a hugely amplified

heavy

> > > breather. Tom was not keen - and we didn't kit him out this

> time,

> > > just let him watch Mark, mask fitted, wheezing away, with Tom

> > inside

> > > the chamber with him. The door closing was fine, the space

> itself

> > > was fine (it really is quite big and you can see out of the

> > > portholes!) but the creepy breathing (sorry Mark, nothing

> > personal)

> > > was not to his liking and what he'll be like with his own head

> in

> > > the PVC hood is anyone's guess.

> > >

> > > Managed to get him down to 8 foot (1.25) before Tom's fingers

> went

> > > into the ears and we stopped. Think getting him used to it

will

> be

> > a

> > > slow, lengthy process. We'll keep you updated. Too good an

> > > opportunity to miss but Tom is the first autistic child

they've

> > > treated so very much a journey of discovery for all of us!

> > >

> > > best

> > >

> > > Steph

> > >

> >

>

[Guest guest]

At Advance in East Grinstead (www.advancecentre.org.uk) - they are

mainly for cerebral palsy.

Neil

>

> Neil

> where do you have your HBOT?

>

>

[Guest guest]

Hi Charlie is 41/2 and we have done 18 hours of HBOT. The one he

went in in the States had a DVD and he went in with my husband. It

hurt his ears going down but was ok after that. Didn't use a mask

but just put oxygen tube near nose. He has been in one in the UK

with no DVD and Andy just read to him - I have to say my husband is

very good at keeping him calm - I don't think I would suceed.

We have done 18 hours so far and am going for 40 + - speech and

cognition has improved but we have had regression which is a rebound

effect which should hopefully go after 40 hours.

Good luck

Peta -

-- In Autism Treatment , " bbrowne123 "

<bbrowne123@y...> wrote:

>

> Please keep us updated as i am i the exact same position as you.

we

> go for our first initial information session next week. I am

> hesitant as to how my little guy will take it. did you have to buy

> your own mask? or is this standard? Did they have a tv or anything

> inside the chamber to keep them busy?? What do you do for an hour

> with a child on your knee?? I know my son is going to go bonkers.

>

> thanks

>

>

> >

> > Went for our " acclimitisation " session at the local HBOT. Very

> glad

> > we did - this is going to be a tough one. Tom went into the

> chamber

> > happily - it's a big round thing, like a diving bell or round

> > submarine with portholes. Only thing lacking was sailors

> >

> > The noise is not the sort of clanging I expected but the noise

of

> > inhaling the oxygen. It does sound like a hugely amplified heavy

> > breather. Tom was not keen - and we didn't kit him out this

time,

> > just let him watch Mark, mask fitted, wheezing away, with Tom

> inside

> > the chamber with him. The door closing was fine, the space

itself

> > was fine (it really is quite big and you can see out of the

> > portholes!) but the creepy breathing (sorry Mark, nothing

> personal)

> > was not to his liking and what he'll be like with his own head

in

> > the PVC hood is anyone's guess.

> >

> > Managed to get him down to 8 foot (1.25) before Tom's fingers

went

> > into the ears and we stopped. Think getting him used to it will

be

> a

> > slow, lengthy process. We'll keep you updated. Too good an

> > opportunity to miss but Tom is the first autistic child they've

> > treated so very much a journey of discovery for all of us!

> >

> > best

> >

> > Steph

> >

>

[Guest guest]

Hi Charlie is 41/2 and we have done 18 hours of HBOT. The one he

went in in the States had a DVD and he went in with my husband. It

hurt his ears going down but was ok after that. Didn't use a mask

but just put oxygen tube near nose. He has been in one in the UK

with no DVD and Andy just read to him - I have to say my husband is

very good at keeping him calm - I don't think I would suceed.

We have done 18 hours so far and am going for 40 + - speech and

cognition has improved but we have had regression which is a rebound

effect which should hopefully go after 40 hours.

Good luck

Peta -

-- In Autism Treatment , " bbrowne123 "

<bbrowne123@y...> wrote:

>

> Please keep us updated as i am i the exact same position as you.

we

> go for our first initial information session next week. I am

> hesitant as to how my little guy will take it. did you have to buy

> your own mask? or is this standard? Did they have a tv or anything

> inside the chamber to keep them busy?? What do you do for an hour

> with a child on your knee?? I know my son is going to go bonkers.

>

> thanks

>

>

> >

> > Went for our " acclimitisation " session at the local HBOT. Very

> glad

> > we did - this is going to be a tough one. Tom went into the

> chamber

> > happily - it's a big round thing, like a diving bell or round

> > submarine with portholes. Only thing lacking was sailors

> >

> > The noise is not the sort of clanging I expected but the noise

of

> > inhaling the oxygen. It does sound like a hugely amplified heavy

> > breather. Tom was not keen - and we didn't kit him out this

time,

> > just let him watch Mark, mask fitted, wheezing away, with Tom

> inside

> > the chamber with him. The door closing was fine, the space

itself

> > was fine (it really is quite big and you can see out of the

> > portholes!) but the creepy breathing (sorry Mark, nothing

> personal)

> > was not to his liking and what he'll be like with his own head

in

> > the PVC hood is anyone's guess.

> >

> > Managed to get him down to 8 foot (1.25) before Tom's fingers

went

> > into the ears and we stopped. Think getting him used to it will

be

> a

> > slow, lengthy process. We'll keep you updated. Too good an

> > opportunity to miss but Tom is the first autistic child they've

> > treated so very much a journey of discovery for all of us!

> >

> > best

> >

> > Steph

> >

>

[Guest guest]

Hi Neil We do HBOT in East Grinstead and also go to Brabstreet's

clinic - It's a small world!

Peta-

-- In Autism Treatment , " neil_and_graciela "

<ntaverner@t...> wrote:

>

> At Advance in East Grinstead (www.advancecentre.org.uk) - they are

> mainly for cerebral palsy.

>

> Neil

>

> >

> > Neil

> > where do you have your HBOT?

> >

> >

>

[Guest guest]

Hi,

I have not been treated with HBOT, but.......

On the basis of a description of HBOT on the web, I would be extremely cautious

in giving this treatment to a child with SMA. I don't know which type of SMA the

child has and how severe her/his condition is. If his/her breathing is affected

by SMA then my reasoning is that the treatment maybe potentially dangerous.

People with SMA should not usually be administered oxygen, even if they have

serious breathing difficulties. In these situations, they should be put on a

respirator.

The function of breathing is to take oxygen into the body as you inhale and,

importantly, also remove carbon dioxide from the body as you exhale. For a

person who has reduced lung capacity due to a muscular disease such as SMA, if

they are given oxygen when under respiratory distress, - the person's body is

deceived into thinking that s/he is adequately ventilated - because the oxygen

levels in the bloodstream are adequeate. BUT only one half of the equation is

solved. The excess carbon dioxide is not removed. This may lead to a CO2

poisoning which makes you first sleepy, then you loose consciousness and you can

die if no corrective measures are taken.

I am no doctor, I nothing about HBOT except what I found with Google - but

please, do think twice before giving this treatment to a child with SMA.

Especially if s/he is not able to walk or sit unassisted.

I am an adult with SMA type II, and I have been in situation where my

respiratory distress was supposedly corrected with oxygen which then led into

serious problems.

kind regards

Taya

(unknown)

DEar Group,

I am a clinic director for a non-profit organization which provides

hyperbaric oxygen therapy to those whose diagnoses are not covered by

insurances, Medicare and/or Medicaid. I have been contacted by the family

of a very young client who has SMA. They are potentially seeking our

services.

I have never heard of SMA until now and I have no idea if HBOT will help.

I you have been treated with HBOT and found it helpful or you know someone

with SMA who has had HBOT treatment, I would certainly find the information

helpful in directing this family.

Thank you.

Judith Ann Burkholder

[Guest guest]

I have the same concerns regarding hyperbaric oxygen therapy for people

SMA. If such a treatment was utilized, I would strongly recommend

consulting a pulmonary physician specializing in neuromuscular diseases

such as Dr. Jon Bach beforehand. I was miss treated and almost died

from CO2 retention. At the very least, such a treatment would require

frequent arterial blood gas monitoring. Let us know what you decide.

Alana

[Guest guest]

Thanks for the input. Judy

>From: " Alana " <alrt@...>

>Reply-

>

>Subject: Re: HBOT

>Date: Mon, 12 Jun 2006 02:11:06 -0000

>

>I have the same concerns regarding hyperbaric oxygen therapy for people

>SMA. If such a treatment was utilized, I would strongly recommend

>consulting a pulmonary physician specializing in neuromuscular diseases

>such as Dr. Jon Bach beforehand. I was miss treated and almost died

>from CO2 retention. At the very least, such a treatment would require

>frequent arterial blood gas monitoring. Let us know what you decide.

>

>Alana

>

>

>

[Guest guest]

HBOT also helped pull our son out of a terrible state, however, he

is not seizure free yet. What pressure dives did you do? (We did 1.5

in a hard chamber.) How frequently did you do the dives, and how

many total did you do?

Thanks,

-- In , " kaorhomeschool " <sunsage@...>

wrote:

>

> Please read this

> http://www.hopeformychild.com/research/epilepsy-analysis-100.html

> April 2 this year our daughter went to the hospital, a SE event,

we were told she has MAE.

> we had been through a year of a downward spiral, GM seizures every

2 weeks to start by

> christmas as many as 1000 of every kind. I believe that the

downward trend had to do

> with the drugs and how they were prescribed. What has happened

since we left the

> hospital is she started HBOT we have her on 2 drugs her weight is

40 lb. she gets .5 ml

> valporic acid syrup three times a day and 2 ml keppra liquid three

times a day. The levels

> of the drugs below therapeutic levels. The point is we have been

seizure free for over eight

> weeks.

> We are fighting with our insurance to get this therapy covered.

> M & Jim

>

[Guest guest]

Miranda,

If I recalled correctly, my son's neurologist told me that is not a good thing

to try.

CY

miranda goranflo <mirandag1981@...> wrote:

Has anyone here tried hyperbaric oxygen therapy? It's something we have recently

been looking into for our daughter and seems promising. Just trying to get a

little more info on it. Thanks.

Miranda

---------------------------------

Got a little couch potato?

Check out fun summer activities for kids.

[Guest guest]

We looked into it as there had been some discussion on the 'rare epilepsy

syndromes' and 'lks' (our son has landau-kleffner syndrome). It

does seem to have helped some people. We tried it but didn't notice any

difference after 5 sessions. They say you have to do it quite intensively, ie

daily for several weeks, and we just couldn't manage this what with school,

finding childcare for my younger son, etc.

Try searching under HBOT on those groups as there is some info and success

stories.

Edinburgh

; ketogenic@...:

mirandag1981@...: Thu, 13 Sep 2007 06:51:48 -0700Subject:

[ ] HBOT

Has anyone here tried hyperbaric oxygen therapy? It's something we have recently

been looking into for our daughter and seems promising. Just trying to get a

little more info on it. Thanks.Miranda---------------------------------Got a

little couch potato? Check out fun summer activities for kids.[Non-text portions

of this message have been removed]

_________________________________________________________________

100’s of Music vouchers to be won with MSN Music

https://www.musicmashup.co.uk

[Guest guest]

Miranda,

We have done HBOT for my son for 2 years regularly who had mild cp, mild left

hemiperisis,mild microcephalisis, seizure disorder,ppdnos,and anoxic brain

injury at

birth.The cp gone the left hemiperisis gone ,microcephalisis gone. My son's aura

is his

ears hurting and he begs for HBOT because he feels better inside and for a

little while

afterwards.Sometimes he will comepletely bypass having a round of

seizuresbecause of

HBOT.But he still has seizures. If he has had a bad seizure and I notice some

uneven gate

or other ill effects we do some HBOT and he gets better. His doctor did

recommend it.

It wasn't all that we hoped for but we still think it's worth it.

Well that's our experience for what it's worth.Hope it helps.

Happy researching,

>

> Has anyone here tried hyperbaric oxygen therapy? It's something we have

recently been

looking into for our daughter and seems promising. Just trying to get a little

more info on

it. Thanks.

>

Miranda

>

>

> ---------------------------------

> Got a little couch potato?

> Check out fun summer activities for kids.

>

>

[Guest guest]

HI, MY NAME IS ROBIN. I HAVE ON BOTH SIDES OF MY BRAIN. WHAT IS HBOT. THANKYOU!

HOPE IS ALL WELL.

SINCERLY,

ROBIN

moniquegreg2000 <moniquegreg2000@...> wrote:

Miranda,

We have done HBOT for my son for 2 years regularly who had mild cp, mild left

hemiperisis,mild microcephalisis, seizure disorder,ppdnos,and anoxic brain

injury at

birth.The cp gone the left hemiperisis gone ,microcephalisis gone. My son's

aura is his

ears hurting and he begs for HBOT because he feels better inside and for a

little while

afterwards.Sometimes he will comepletely bypass having a round of

seizuresbecause of

HBOT.But he still has seizures. If he has had a bad seizure and I notice some

uneven gate

or other ill effects we do some HBOT and he gets better. His doctor did

recommend it.

It wasn't all that we hoped for but we still think it's worth it.

Well that's our experience for what it's worth.Hope it helps.

Happy researching,

>

> Has anyone here tried hyperbaric oxygen therapy? It's something we have

recently been

looking into for our daughter and seems promising. Just trying to get a little

more info on

it. Thanks.

>

Miranda

>

>

> ---------------------------------

> Got a little couch potato?

> Check out fun summer activities for kids.

>

>

[Guest guest]

Hi Miranda,

our neuro said it was irrelevant, we went ahead with HBOT thru Dr. Ken

Stoller in Santa Fe NM. our four year old daughter started after a 4

day stay in the hospital with status epileptus, She was diagnosed with

doose syndrome, she is on sub therapeutic levels of valporic acid syrup

and liquid keppra and has been seizure free for almost 4 months.

We are currently working/fighting with the insurance company to cover

more treatments.

You can find out more from Dr Stoller at

<http://www.hbotnm.com/about.html>

we have lots more information if you are interested. Our daughter

showed improvement with in the first week and has had over 70 sessions

since April.

Love and Life

M & Jim

[Guest guest]

Robin,

HBOT is: hyper baric oxygen therapy.

Blessings,

> >

> > Has anyone here tried hyperbaric oxygen therapy? It's something we have

recently

been

> looking into for our daughter and seems promising. Just trying to get a

little more info

on

> it. Thanks.

> >

Miranda

> >

> >

> > ---------------------------------

> > Got a little couch potato?

> > Check out fun summer activities for kids.

> >

> >

[Guest guest]

HBOT definitely helped my son. There was some discussion of this on

this group in July or early Aug. you might want to read.

- In , <megan63hughes@...>

wrote:

>

>

> We looked into it as there had been some discussion on the 'rare

epilepsy syndromes' and 'lks' (our son has landau-

kleffner syndrome). It does seem to have helped some people. We

tried it but didn't notice any difference after 5 sessions. They

say you have to do it quite intensively, ie daily for several weeks,

and we just couldn't manage this what with school, finding childcare

for my younger son, etc.

>

> Try searching under HBOT on those groups as there is some info and

success stories.

>

>

> Edinburgh

>

>

> ; ketogenic@...:

mirandag1981@...: Thu, 13 Sep 2007 06:51:48 -0700Subject:

[ ] HBOT

>

>

>

>

> Has anyone here tried hyperbaric oxygen therapy? It's something we

have recently been looking into for our daughter and seems

promising. Just trying to get a little more info on it.

Thanks.Miranda---------------------------------Got a little couch

potato? Check out fun summer activities for kids.[Non-text portions

of this message have been removed]

>

>

>

>

>

>

> _________________________________________________________________

> 100's of Music vouchers to be won with MSN Music

> https://www.musicmashup.co.uk

>

>