Re: Bipap Questions Please

[Guest guest]

Missy,

I think you need to find an RT who understands SMA. Those settings are

opposite of what they should be. Unless they understand the condition

being treated most will set it at something like 12 over 8. Those are

the standard settings used for the average Joe, but what they don't

understand is that SMAers need help inhaling and exhaling. They will be

apprehensive with Dr. Bach's settings, but they need to trust him

because they work.

Also, I was curious about the advantage you see with the humidifier.

Does it help? What specific difference do you notice if you don't use

it. Jordan generates secretions, and we've been concerned that a

humidifier may make those worse.

Jay

>

> My sons settings are not what most SMA kids are... I know you are not

a kid, but I think the same rule from goes with all SMA patents. The

epap should be the lowest the machine goes. and the Ipap should be

something like 10 more than that. That is what Dr. Bach explained to

me, but can't get the docs here to do that for Ian. His settings are

6/9. Bad ones.

>

> Now for the humidifier, Ian uses a heated one with the bipap.

> I hope this helped some.

> Missy

>

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[Guest guest]

with aschdon we use a humidifier and we were told never to use his bipap wiht

out it. The reason is I think is because we live in a very dry climate and

having that air blowing in and drying out your nasel passages can be very

irritating and cause problems. Aschdon has used it a couple of times wiht out it

when we were trying to get a new one and each time his throat hurt, his lips

were majorly chapped and he woke up 3 times just for a drink of water.

Kenya

jondus@... wrote:

Missy,

I think you need to find an RT who understands SMA. Those settings are

opposite of what they should be. Unless they understand the condition

being treated most will set it at something like 12 over 8. Those are

the standard settings used for the average Joe, but what they don't

understand is that SMAers need help inhaling and exhaling. They will be

apprehensive with Dr. Bach's settings, but they need to trust him

because they work.

Also, I was curious about the advantage you see with the humidifier.

Does it help? What specific difference do you notice if you don't use

it. Jordan generates secretions, and we've been concerned that a

humidifier may make those worse.

Jay

>

> My sons settings are not what most SMA kids are... I know you are not

a kid, but I think the same rule from goes with all SMA patents. The

epap should be the lowest the machine goes. and the Ipap should be

something like 10 more than that. That is what Dr. Bach explained to

me, but can't get the docs here to do that for Ian. His settings are

6/9. Bad ones.

>

> Now for the humidifier, Ian uses a heated one with the bipap.

> I hope this helped some.

> Missy

>

A FEW RULES

* The list members come from many backgrounds, ages and beliefs So all

members most be tolerant and respectful to all members.

* Some adult language and topics (like sexual health, swearing..) may

occur occasionally in emails. Over use of inappropriate language will

not be allowed. If your under 16 ask your parents/gaurdian before you

join the list.

* No SPAMMING or sending numerous emails unrelated to the topics of

spinal muscular atrophy, health, and the daily issues of the disabled.

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[Guest guest]

here in the SF bay area a humidifier is too much for me. an HME is

perfect.

[Guest guest]

i use the humidified bi-pap. I have allergies and this helpes keep them calmed

down. I am an adult and can really tell you the benefits of the humidified

bi-pap. The bi-pap has a great tendency to dry out the nasal passages.

Sometimes mine drys them to the point that I will have nose bleeds. The air can

sometimes give the nasal passages a burning feeling especially if they are to

dry. My bi-pap is a heated humidifier. The air coming out isn't so cool which

also will dry the passages. I've tried the regular bi-pap and I'd wake up

several times during the night needing a drink of water. I'd be so miserable to

the point i'd go without it than suffer with it on. I feel more freshed in the

mornings using the humidified 1. I feel the greatest benefit from the humidified

is it does cut down on my allergies. Hope this information helps you

RE: Bipap Questions Please

with aschdon we use a humidifier and we were told never to use his bipap wiht

out it. The reason is I think is because we live in a very dry climate and

having that air blowing in and drying out your nasel passages can be very

irritating and cause problems. Aschdon has used it a couple of times wiht out it

when we were trying to get a new one and each time his throat hurt, his lips

were majorly chapped and he woke up 3 times just for a drink of water.

Kenya

jondus@... wrote:

Missy,

I think you need to find an RT who understands SMA. Those settings are

opposite of what they should be. Unless they understand the condition

being treated most will set it at something like 12 over 8. Those are

the standard settings used for the average Joe, but what they don't

understand is that SMAers need help inhaling and exhaling. They will be

apprehensive with Dr. Bach's settings, but they need to trust him

because they work.

Also, I was curious about the advantage you see with the humidifier.

Does it help? What specific difference do you notice if you don't use

it. Jordan generates secretions, and we've been concerned that a

humidifier may make those worse.

Jay

>

> My sons settings are not what most SMA kids are... I know you are not

a kid, but I think the same rule from goes with all SMA patents. The

epap should be the lowest the machine goes. and the Ipap should be

something like 10 more than that. That is what Dr. Bach explained to

me, but can't get the docs here to do that for Ian. His settings are

6/9. Bad ones.

>

> Now for the humidifier, Ian uses a heated one with the bipap.

> I hope this helped some.

> Missy

>

A FEW RULES

* The list members come from many backgrounds, ages and beliefs So all

members most be tolerant and respectful to all members.

* Some adult language and topics (like sexual health, swearing..) may

occur occasionally in emails. Over use of inappropriate language will

not be allowed. If your under 16 ask your parents/gaurdian before you

join the list.

* No SPAMMING or sending numerous emails unrelated to the topics of

spinal muscular atrophy, health, and the daily issues of the disabled.

Post message:

Subscribe: -subscribe

Unsubscribe: -unsubscribe

List manager: (Sexy Mature Artist) Email: Esma1999@...

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[Guest guest]

Sierra also uses a humidifier with her Bi-pap ...... helps her from getting

to dry!

Shaylene

Sierra Journey Factor ( Type 2 )