Re: Anybody w/ breathing troubles?

[Guest guest]

Tricia,

Kira had a lot of trouble including apnea when she was little and was seen by DR Keens in the pulmonology department at children's Los Angeles.

Now she just has the asthma and sometimes aspiration problems. She has a wet cough when it is aspiration, and a wheeze when it is the asthma.

For the aspiration it helped greatly to elevate the head of her bed so when she went to sleep it keep the reflux down to a small roar. In her crib we put the head on the top level, aand dropped the foot to the lowest level.

In her big girl bed, we had a wedge made to fit under her mattress to raise the head of her bed. She still uses that now and is 10. It is my understanding that you can still have reflux even after a fundo depending on how tightly or not it was done.

she uses inhalers now to help keep things under control.

Hope that helps a little.

Hugs

O.

Mito Mommy smiling with tear filled eyes, holding on to Gods hand tightly, knowing He holds us in the palm of His hands and won't let go!

[Guest guest]

In a message dated 3/21/01 1:25:07 PM Central Standard Time,

tricia1994@... writes:

<< Can someone explain the connection or not between mito and breathing

problems? Does anyone have asthma or low pulse ox's when their child

is ill? How are your breathing troubles being addressed and treated

and by witch Doc? >>

Tricia, most mito kids who are low tone and have coordination problems or

ataxia, have breathing problems as well. My daughter's breathing has always

been quite shallow and she holds her breath at times for a split second. I

was told low tone and immobility can cause shallow breathing as well as

increased risk for pneumonia. Her OT feels she hasn't mastered words or

communicative speech because it takes an extreme amount of breath control and

coordination of muscles and the voice box to produce speech. Her O2 levels

drop at night due to sleep apnea(2 types, obstructive and periodic

breathing). The apnea has caused her rib cage to develop shallow and flare at

the bottom. Aspiration is another factor that can compromise the pulmonary

system, as well as asthma. Chelsea is a silent aspirator and is tube fed. We

do chest PT and inhaled medicine 2 times a day, even though she has not been

diagnosed with asthma, but it seems to help her manage her secretions. The

breathing issue seems to be a big one with mito, many people have multiple

compromises on the pulmonary function.

e, Chelsea' mom(non-specific mito)

[Guest guest]

Dear Tricia:

I have mito (Melas) and have severe breathing problems.

I am on oxygen 24 hours a day and I use the BiPap also during the day and

all night too. I have a weak diaphragm and the doctor ordered the BiPap

right away....I also have sleep apnea.

I notice when I am in a mito crash and am really sick my saturation levels

go way down too....when this happens, I go immediately on the BiPap and it

helps so much. It is like I can't get another breath and am struggling with

air hunger. Usually laying very still on the bed with the BiPap works and

then I can alternate to the O2 (in the day).....nightime I am strickly on

Bipap with O2 feeding into it.

I guess the mito cells just don't get enough oxygen when I am trying to move

my arms (as I do not walk) taking a shower, or sometimes just sitting up too

long in my wheelchair will cause me to have air hunger.

So I guess the thing is is that I have to pace myself.....very

carefully.....and not try to do too much in one day. Although I do not do

any housework, cook, etc......just sitting up for me is a chore.

I had many pulmonary tests that showed a weak diaphragm and continue to go

all the time for testing. I have a respiratory therapist that comes to my

house, adjusts my BiPap if needed, and adjusts my oxygen if needed. I have

a oxygen company that supplies me with all my tanks that go behind my

wheelchair and they are always delivering to me! LOL They know I try to go

out as much as I can, but they also know that they have to be here for me if

I need them......and they sure are.....they are great!

Love, Trish

Anybody w/ breathing troubles?

> Can someone explain the connection or not between mito and breathing

> problems? Does anyone have asthma or low pulse ox's when their child

> is ill? How are your breathing troubles being addressed and treated

> and by witch Doc?

>

> Thanks,

>

> Tricia

>

>

>

>

> http://www.umdf.org/support/listpolicy.html

>

>

[Guest guest]

Tricia,

My son was diagnosed with asthma last winter. Fortunately, it only flares up in the real cold weather. We use Beclovent or Flovent(INHALERS). If it is really bad we use the Nebulizer with Abuterol. His Ped. takes care of it for us because she has a special interest in children with asthma. Goodluck!

Love (Adoring Mama to , the bestest kisser, cutest smiler & infectious giggler) http://www.geocities.com/jacobchilds (click here for updates on Master )