Re: [MedicaidforHDOT] Re: Rosita HBO progress/ Reply

[Guest guest]

Thank you Grace for your update. Your daughter sounds like a very

spiritually motivated child. I am only a parent, but I can gladly share with you

regarding a couple of things you mentioned: Sleep Apnea: Dr. Stoller (New

Mexico)

mentioned to me many months ago that if there was any concern on this issue,

some correction should be made before starting HBOT. The reason was simply

because if there is not enough oxygen retention, then the HBOT would not be very

effective (like putting air in a leaking tire). My husband has sleep apnea and

he uses a C-pap machine at night. When you mitigate that problem, HBOT is

still the best course.

About Trental: A few years ago when my son was in Arizona, he had his first

Neuro Spect (Spect Scan) showing a low blood flow to bitemporal lobes. As it

turned out, I had just read about " Pentoxyoline( (spelling?) which is " Trental "

as a possible treatment for the low blood flow. I can't say that it helped,

because there were so many other problems that arose in AZ, so my son returned

to CA. His new doctors removed the Trental. There is literature claims that

it can be helpful, so perhaps one of our good doctors on the list might

answer for you. Any additional therapies that your daughter can tolerate should

never be overlooked. How about swimming and horseback riding (gentle of

course)? Our spirit is still the real " driver, " although we just keep

forgetting.

Keep up your good work and God bless you and your daughter.

Marie

[Guest guest]

Dear Armarie and all, thanks so much for enlightenment.

We once also considered about using C-pap, anyway since the machine is quite

expensive here and nobody (really nobody!) has any knowledge or experience

of using it on children, we didn't do that. In order to buy that, we also

have to order from USA.

We use guedel (the small kit used in patient during surgery to prevent

air-blocking) for her in the night. Have you had reference of using Cpap

with non verbal children? What caused your husband sleep apnea?

What brand is your Cpap and how much is it? Do you have any reference with

special brand for Cpap?

Thanks.

Grace

Re: [MedicaidforHDOT] Re: Rosita HBO progress/ Reply

> Thank you Grace for your update. Your daughter sounds like a very

> spiritually motivated child. I am only a parent, but I can gladly share

with you

> regarding a couple of things you mentioned: Sleep Apnea: Dr. Stoller (New

Mexico)

> mentioned to me many months ago that if there was any concern on this

issue,

> some correction should be made before starting HBOT. The reason was

simply

> because if there is not enough oxygen retention, then the HBOT would not

be very

> effective (like putting air in a leaking tire). My husband has sleep

apnea and

> he uses a C-pap machine at night. When you mitigate that problem, HBOT is

> still the best course.

>

> About Trental: A few years ago when my son was in Arizona, he had his

first

> Neuro Spect (Spect Scan) showing a low blood flow to bitemporal lobes. As

it

> turned out, I had just read about " Pentoxyoline( (spelling?) which is

" Trental "

> as a possible treatment for the low blood flow. I can't say that it

helped,

> because there were so many other problems that arose in AZ, so my son

returned

> to CA. His new doctors removed the Trental. There is literature claims

that

> it can be helpful, so perhaps one of our good doctors on the list might

> answer for you. Any additional therapies that your daughter can tolerate

should

> never be overlooked. How about swimming and horseback riding (gentle of

> course)? Our spirit is still the real " driver, " although we just keep

forgetting.

>

> Keep up your good work and God bless you and your daughter.

> Marie

>

>

>

[Guest guest]

Dear Grace,

I don't know how my husband developed sleep apnea, except that as a child (in

Argentina - many years ago), he had some in-office surgery to correct a

deviated septum, which may have only been moderately successful. We were

married

at least 35 yrs before his condition was officially discovered by a personal

friend of my daughter who is a respiratory therapist. The therapist who was

visiting us simply looked at my husband and said: " I know he has sleep apnea; I

bet he snores terribly through the night. " His own doctor at the time had

ignored my husband's questions about his nocturnal snoring. His comment was:

" Tell

your wife to wear earplugs! " The typical way to confirm the diagnosis is to

do an overnight sleep test that monitors your sleep. In my husband's case, he

stopped breathing 300 times during his night-time testing. I often think

that patients have to educate their doctors, as is the case with HBOT. The

C-Pap

is the standard here in the U.S. and is covered by virtually all insurance

companies as part of your health care. You should search out anyone doing

respiratory therapy for the testing. There is also a simple " oximitry test "

whereby a little electrode is placed on the finger, but the overnight study is

considered more conclusive in measuring the oxygen levels. Aren't there some

missionary and humanitarian doctors that perform services gratis to other

countries

that do not have modern treatment? You might even obtain any device

necessary going that route. Perhaps some of our friends on this site might

offer some

suggestions. You seem very dedicated and resourceful and I am sure you will

find a way. God bless you and your family.

Sincerely,

Marie in CA

[Guest guest]

CPAP is prescribed by a physician and there are

contraindications that must be avoided. Talk with you doctor.

---- Original message ----

>Date: Thu, 15 Apr 2004 17:17:50 +0700

>From: " Grace Pelawi " <mathilda@...>

>Subject: Re: [MedicaidforHDOT] Re: Rosita HBO progress/

Reply

><medicaid >

>

>Dear Armarie and all, thanks so much for enlightenment.

>

>We once also considered about using C-pap, anyway since the

machine is quite

>expensive here and nobody (really nobody!) has any knowledge

or experience

>of using it on children, we didn't do that. In order to buy

that, we also

>have to order from USA.

>

>We use guedel (the small kit used in patient during surgery

to prevent

>air-blocking) for her in the night. Have you had reference

of using Cpap

>with non verbal children? What caused your husband sleep

apnea?

>

>What brand is your Cpap and how much is it? Do you have any

reference with

>special brand for Cpap?

>

>Thanks.

>Grace

>

> Re: [MedicaidforHDOT] Re: Rosita HBO progress/ Reply

>

>

>> Thank you Grace for your update. Your daughter sounds

like a very

>> spiritually motivated child. I am only a parent, but I can

gladly share

>with you

>> regarding a couple of things you mentioned: Sleep Apnea:

Dr. Stoller (New

>Mexico)

>> mentioned to me many months ago that if there was any

concern on this

>issue,

>> some correction should be made before starting HBOT. The

reason was

>simply

>> because if there is not enough oxygen retention, then the

HBOT would not

>be very

>> effective (like putting air in a leaking tire). My

husband has sleep

>apnea and

>> he uses a C-pap machine at night. When you mitigate that

problem, HBOT is

>> still the best course.

>>

>> About Trental: A few years ago when my son was in Arizona,

he had his

>first

>> Neuro Spect (Spect Scan) showing a low blood flow to

bitemporal lobes. As

>it

>> turned out, I had just read about " Pentoxyoline(

(spelling?) which is

> " Trental "

>> as a possible treatment for the low blood flow. I can't

say that it

>helped,

>> because there were so many other problems that arose in

AZ, so my son

>returned

>> to CA. His new doctors removed the Trental. There is

literature claims

>that

>> it can be helpful, so perhaps one of our good doctors on

the list might

>> answer for you. Any additional therapies that your

daughter can tolerate

>should

>> never be overlooked. How about swimming and horseback

riding (gentle of

>> course)? Our spirit is still the real " driver, " although

we just keep

>forgetting.

>>

>> Keep up your good work and God bless you and your daughter.

>> Marie

>>

>>

>>