Re: info on CO2 retention in children needed

[Guest guest]

Your post caught my eye – has

Brain Stem problems. His MRI at 4 months showed an abnormally small Brain Stem.

is also profoundly deaf. The other commonality is that also uses a

BI-Pap and loves it. We have noticed a great difference with it – so much

so that won’t sleep without it. I don’t know what to tell you

about the high CO2 levels – ’s are high only at night.

Good Luck,

Sue Ann Bube

info on CO2

retention in children needed

Hello everyone,

We are new to this

group. Our ten yr. old son has an

unspecified mito disorder. My mother

recently passed away from what

we always thought to be ALS. However, given

the mito factor in our

son, we feel she may have had mito as well.

There is a strong family

history of MD on both sides of my family.

My question to someone is

this: has anyone else had high CO2

retention and if so what do you do for it?

Collin uses a bi-pap

machine at night but we haven't noticed a

difference, and his CO2 is

high during the day as well. It is a

combination of weakened

breathing muscles and metabolic processes, but we

don't know what to

do if bi-pap doesn't help. It takes a long

time to get an appt. with

Dr. Cohen at CCF, and Collin doesn't go back to

MDA clinic until June.

Also, is hearing loss a problem for

anyone? He has hearing loss due

to conduction problems at the brain stem

level. Not profound or

anything (and at times selective I'm sure ) but

we don't know if a

hearing aid will help or not. I'm going to

talk to an audiologist

this week but I wanted to know if anyone had any

advice first.

Thanks, God Bless

your families and our prayers are for your

families. This is a tough illness but we try

hard to not let it

define us or our family. This group seems

very supportive of one

another, that is a big help when dealing with

something that not many

Dr's specialize in or know about. We have a

great pediatrician and

are only an hour away from an MDA clinic.

Dr. Cohen is a great help

but is swamped, so we try to figure things out as

best we can.

Please

contact mito-owner with any problems or questions.

[Guest guest]

Your post caught my eye – has

Brain Stem problems. His MRI at 4 months showed an abnormally small Brain Stem.

is also profoundly deaf. The other commonality is that also uses a

BI-Pap and loves it. We have noticed a great difference with it – so much

so that won’t sleep without it. I don’t know what to tell you

about the high CO2 levels – ’s are high only at night.

Good Luck,

Sue Ann Bube

info on CO2

retention in children needed

Hello everyone,

We are new to this

group. Our ten yr. old son has an

unspecified mito disorder. My mother

recently passed away from what

we always thought to be ALS. However, given

the mito factor in our

son, we feel she may have had mito as well.

There is a strong family

history of MD on both sides of my family.

My question to someone is

this: has anyone else had high CO2

retention and if so what do you do for it?

Collin uses a bi-pap

machine at night but we haven't noticed a

difference, and his CO2 is

high during the day as well. It is a

combination of weakened

breathing muscles and metabolic processes, but we

don't know what to

do if bi-pap doesn't help. It takes a long

time to get an appt. with

Dr. Cohen at CCF, and Collin doesn't go back to

MDA clinic until June.

Also, is hearing loss a problem for

anyone? He has hearing loss due

to conduction problems at the brain stem

level. Not profound or

anything (and at times selective I'm sure ) but

we don't know if a

hearing aid will help or not. I'm going to

talk to an audiologist

this week but I wanted to know if anyone had any

advice first.

Thanks, God Bless

your families and our prayers are for your

families. This is a tough illness but we try

hard to not let it

define us or our family. This group seems

very supportive of one

another, that is a big help when dealing with

something that not many

Dr's specialize in or know about. We have a

great pediatrician and

are only an hour away from an MDA clinic.

Dr. Cohen is a great help

but is swamped, so we try to figure things out as

best we can.

Please

contact mito-owner with any problems or questions.

[Guest guest]

Hi,

I belong to a Myopathy list and lots of the children on that list have breathing problems b/c of weakness in the respiratory muscles and they have found Dr. Bach to be really helpful - I believe he's located in NJ and he has a book out as well. His perspective I believe is to make the patients as comfortable as possible and as mobile as possible (not trached). If you are interested in finding more info., I can hook you up with one of the parents on the list who has used him for help. Let me know, put Anne R on the subject list and I'll make sure not to accidently miss it.

Anne R

[Guest guest]

Both of our daughters have issues with CO2

retention. Our youngest, , not only retains CO2 but her brain does

NOT sense when the CO2 is elevated resulting in more significant respiratory

compromise. She is ventilated at night with a Port-a-Lung and NEV 100

(negative pressure system) and a minimum of two hours each day with a chest

cuirass and the NEV 100. We will be trialing the pneumobelt with the

Respironics Continuum in March as an alternative form of ventilatory support

(to blow off the CO2). lies is ventilated during sleep with

BiPAP.

Both girls also have intermittent hearing issues.

uses an FM system for education and things like tv/radio when her

ventilator is in use (else we can’t hear anything over the volume).

The main issue is CAPD, although also had mild sensory neural loss as

well.

has a service dog, Brooklyn, who was specially

trained to monitor her breathing, seizures and responds to monitor/ventilator alarms.

Brooklyn now

also does some of the more traditional hearing alert response. lies

is waiting for her specially trained dog to be placed with her soon (hoping

within a few weeks).

Joanne Kocourek, RN, CCRC

Manager of Clinical Research Department of

Radiology

The University of Chicago

info on CO2

retention in children needed

Hello everyone,

We are new to this

group. Our ten yr. old son has an

unspecified mito disorder. My mother

recently passed away from what

we always thought to be ALS. However, given

the mito factor in our

son, we feel she may have had mito as well.

There is a strong family

history of MD on both sides of my family.

My question to someone is

this: has anyone else had high CO2

retention and if so what do you do for it?

Collin uses a bi-pap

machine at night but we haven't noticed a

difference, and his CO2 is

high during the day as well. It is a

combination of weakened

breathing muscles and metabolic processes, but we

don't know what to

do if bi-pap doesn't help. It takes a long

time to get an appt. with

Dr. Cohen at CCF, and Collin doesn't go back to

MDA clinic until June.

Also, is hearing loss a problem for

anyone? He has hearing loss due

to conduction problems at the brain stem

level. Not profound or

anything (and at times selective I'm sure ) but

we don't know if a

hearing aid will help or not. I'm going to

talk to an audiologist

this week but I wanted to know if anyone had any

advice first.

Thanks, God Bless

your families and our prayers are for your

families. This is a tough illness but we try

hard to not let it

define us or our family. This group seems

very supportive of one

another, that is a big help when dealing with

something that not many

Dr's specialize in or know about. We have a

great pediatrician and

are only an hour away from an MDA clinic.

Dr. Cohen is a great help

but is swamped, so we try to figure things out as

best we can.

Please

contact mito-owner with any problems or questions.