Re: Air hunger and O2 Saturation

[Guest guest]

Increasing coq10 helps me with true oxygen desaturations as well as air

hunger.

Cheri

>When we were at Dallas, my husband and I talked with Dr. Cohen

>briefly. We discussed O2 saturation. He mentioned that many people

>with mito have high O2 levels in the blood (99-100%) yet seem to have

>difficulty breathing . He explained it to me as the lungs are taking

>in )2 and getting it to the blood, but the cells are unable to

>utilize the O2 (because of the energy production defects). So, Ronan

>has good O2 levels yet he often shows signs of respiratory distress.

>He will breath hard, have indrawings at his neck and sternum and now

>he is starting to collapse his nostrils when he has difficulty. When

>this happen he starts thrashing around in his bed. I'm not sure what

>to do. Since his O2 levels are high would supplimenting with oxygen

>help? Does anyone else have this problem. We have tried ventolin

>inhalers and they seem to help a bit . Any suggestions or ideas

>would be greatly appreciated.

[Guest guest]

, I may be wrong, but my PCP told me that if o2 is high, but your feeling air hunger, giving o2 could cause trouble. He said if the system isn't working right you could build up too much Carbon dioxide, and that could be dangerous. But I'd see what others have to say, or call your metabolic Dr.

Robin

[Guest guest]

Well, I am still torn as to what to do. I do understand that if your

arterial O2 is too high and the CO2 levels drop the brain looses its

drive to breath. High CO2 levels stimulates breathing. However, the

few times Ronan has been on O2 is seems to help, and the adults with

this problem that I have spoken to seem to be relieved with O2.

But...doctors generally do not order oxygen unless the patient

desaturates on a regular basis. Also the doctors here don't know a

whole lot about mito and I hardly think that I can just waltz in

there and tell them that some doctor in the US (I'm from Canada) says

this can happen! Also, Ronan has had one sleep study and two home

night monitors and all have been normal (of course because his O2

levels don't drop). Anyone who looks at him can see that he has

difficulty breathing.

As for the Coenzyme Q10, well, I am already giving twice the dose

that our doctor has ordered!He weighs about 32lbs and I give him 30mg

three times a day (with meals since it is fat soluable). Not sure I

can increase this too much more.

We are suppose to have a appointment with the resp. doc. Our regular

resp doc just went on maternity leave so who knows what this other

doc might say, but he/she won't know me at all. I guess I just watch

and if I feel he is in trouble take him to the ER.

Keep the ideas coming if you have any more. For anyone else who had

Dr. Cohen mention this, did he say how to treat it? I forgot to ask

him that part!!

Take Care,

[Guest guest]

In a message dated 7/23/02 2:07:17 PM Pacific Daylight Time,

hughton@... writes:

<< So, Ronan

has good O2 levels yet he often shows signs of respiratory distress.

He will breath hard, have indrawings at his neck and sternum and now

he is starting to collapse his nostrils when he has difficulty. When

this happen he starts thrashing around in his bed. >>

This is interesting, as this is EXACTLY what happens to intermittently

while sleeping. I have videotaped it for the doctors, and it looks like

obstructive sleep problems, yet he doesn't show obstruction on his sleep

study.

Sorry I can't be of more help, but I would love to know of any published

material by Dr. Cohen or others about this, to take to our pulmonary clinic

appt. on Friday.

Dena

[Guest guest]

I to would like more info and suggestions about this. My has breathing problems. we have never had her O2 levels checked because it happens so spiratically. Now happening more often. I to am not sure just what to do.

Horsley

Re: Air hunger and O2 Saturation

Increasing coq10 helps me with true oxygen desaturations as well as air hunger.Cheri>When we were at Dallas, my husband and I talked with Dr. Cohen >briefly. We discussed O2 saturation. He mentioned that many people >with mito have high O2 levels in the blood (99-100%) yet seem to have >difficulty breathing . He explained it to me as the lungs are taking >in )2 and getting it to the blood, but the cells are unable to >utilize the O2 (because of the energy production defects). So, Ronan >has good O2 levels yet he often shows signs of respiratory distress. >He will breath hard, have indrawings at his neck and sternum and now >he is starting to collapse his nostrils when he has difficulty. When >this happen he starts thrashing around in his bed. I'm not sure what >to do. Since his O2 levels are high would supplimenting with oxygen >help? Does anyone else have this problem. We have tried ventolin >inhalers and they seem to help a bit . Any suggestions or ideas >would be greatly appreciated.Please contact mito-owner with any problems or questions.

[Guest guest]

, The supplement DMG has been disussed here before. I just wanted to

let you know that further info I found on DMG stated that it can help

oxygenate the tissues of the body. I wonder if this could be help for Ronan's

problem. Might be worth looking into. If you are interested in some sources,

just let me know. Chelsea has taken it for well over a year now, I have

noticed that she does not seem as prone to desaturation as she used to. She

still needs O2 at night for obstructive apnea, she is not dropping as low as

she used to. I hope you find a solution!

e, Chelsea's mom(non-specific mito)

[Guest guest]

,

Dr. Cohen's article " Treatment of Mitochodrial Cytopathies " suggest 4-15

mg/kg/day for CoQ 10 dosages. Ronan weighs about 15 kg, so according to

Cohen's recommendations he could take up to 225 mg/per day or 75 mg

three times a day. The article also noted one patient who showed some

improvement with CoQ 10, but when Idebenone was given in addition to the

CoQ 10, the patient showed further improvements.

Has anyone tried Idebenone?

Take care,

[Guest guest]

My doc is a bit stubborn on this dosage point. He says that he has

article that says that dosages of COQ10 above 4mg/kg (I think this

was the dose) while not being harmful, did not show any increase in

effectivity. So , he still prescribes 15 mg three times a day for

Ronan. Also, he still says that " while the suppliments may help,

there is no good studies to show that it really does help " . Our meds

are covered through a grant to the metabolic clinic. I double the

dose on my own (because it is over the counter so I can get my own)

but there is no way he will increase it even with Dr. Cohens

article. I guess I could increase it again on my own. I have not

heard of or used Idebenone. Where do you get it and what would the

dose be I wonder?