info on CO2 retention in children needed

February 15, 2004

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.

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