[tri-med] Re: PH & Apnea

Tara,

I tend to lurk on this list and rarely post.  But that doesn't mean I'm not
interested and don't  value the list (there, how's that?).

Our daughter, Rowan T-18, 8 yrs old, has PH.  A few summers ago, we noticed
her SATS had dropped suddenly (normal, high 80's, dropped to high 60's) with
no real explanation.  We saw a pulmonologist at the Chicago SOFT conference
who talked with us about some causes.  And he directed us to our local
pulmonologist who did a couple of easy tests (non-invasive: blood gas
reading and a test to see what would happen when we gave Rowan oxygen -
which she had not been on up until this point).  He really felt that
everything indicated something other than the PH effecting the sats, because
they generally don't change that quickly - it can take years for them to
drop into a noticeable range.  He recommended an APNEA test, and it turned
out she was having 17 episodes and hour during her sleep.  Now she uses a
CPAP (was not easy to get her to use) and "The Vest".  If you haven't heard
of "The Vest" ask about it.  It has total turned around her health.  What
used to be a chronic pneumonia with every cold, is now just a cold.  I can't
say enough good things about "The Vest".

So yes, there is a connection between low sats, PH and apnea.  It was
described to us as this: the vessels were having spasms, and were unable to
fully operate due to the apnea. It required a sleep study to determine the
extent of her apnea, and it went better than I expected.  The CPAP has
helped, she is much more alert and awake during the day, eats better, and
generally is in the best health I've every seen her.  Not bad considering
the diagnosis.

Good luck to you, 

Colleen, momma to Rowan Margaret, T-18 age 8 and Laurel Eliza, super sister,
age 16 mo.  Wife to Bryan.


On 9/24/08 8:18 PM, "taraforte@xxxxxxx" <taraforte@xxxxxxx> wrote:

> I had just recently asked a question about pulmonary hypertension.? I have now
> been filled with so much knowledge.? Thank you!? I have since?made an
> appointment with a pulmonologist.? Olivia is not on oxygen while awake.? Her
> sats are great.? However, her cardiologist has suggested putting her on it at
> night to help with the PH.? Her oxygen has been dropping out at night.? I am
> not familiar with sleep apnea but I think she may have a touch of it.? Her
> oxygen drops a good bit and then comes back up.? Do you know if there is a
> connection with the two?? Of course,?I learn alot more from your experiences
> than google!? I look forward to the day that I can help someone with their
> challenges.? Thanks so much for bearing with me as I grasp for straws and try
> to keep my baby alive.
> 
> Tara, mom of Olivia (9m T18), Sydney (4), and wife to James
> 
> 
> 
>                   Building ___ooOOoo__ Rainbows
>                        www.trisomyonline.org
>                   Families Helping Families On-line
> 


                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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