Re: Sleep Study? Specialist Question

[Guest guest]

Myst

sorry to hear about the respiratory visit...did you ask the repiratory specialist ,( by the way, is that a pulmolnologist?) about the report itself or did you only get to read the detail after your visit.

It is unfortunate that there are doctors that do not take the time to really to to people. it seems you met one yesterday. I am glad the ENT is seeing you guys quickly.

keep us posted

rosy, mum to max

[Guest guest]

Hi Myst,

Yes, we have has similar experiences but not from my girl's sleep

medicine physician. Several other specialists have either ignored

significant diagnostic study reports or openly expressed the opinion

that there was nothing that could/should be done for children with

mitochondrial disease. Example: has a cardiac pacemaker. We

have had a number of low heart rate alarms on her cr monitor

indicating her pacer was not pacing. We did event monitor recordings

for a month with multiple events which were " read " as artifact by the

local peds cardiologist. I took for a second opinion

consultation at Cleveland CLinic on Monday. The cardiologist looked

at the strips, examined and asked if I would object to havign

another cardiologist see her and review the record immediately. She

called another cardiologist who came within 10 minutes, read teh

strips adn declared that the pacemaker was failing to sense/capture.

THey made an adjustemtn, hoing it will help. IF not, they will

repeat the recordings and make arrangemants to replace the pacemaker

quickly.

In regards to the sleep study, I believe the ENT is appropriate in

seeign your child today. Obstructive apnea to that degree is

significant and treatment is generally initiated quickly.

Unfortunately after treatment, another sleep study is usually done 4-

8 weeks later. Is there another pediatric sleep medicine specialists

close to you? Or, another physician that might assume the

responsibility for reading and reposrting the results?

[Guest guest]

Tough to say what happened, but may be a case of no big deal. Let's

hope so for your case, I know we usually try to get an explanation of

WHY is it not a big deal before we leave. Doctors don't always comply.

If she has apnea, that would usually be managed by repiratory

specialist (pulmonologist). In general, to be considered for apnea

treatment, there need to be more than 10-15 episodes per hour and each

episode would need to be longer than 10 seconds (the low pulse oxygen

may have also been brief, like a momentary glitch in the O2 monitor).

The numbers you gave show Abigail falls just under this threshold,

but you may not have gotten the length per episode from them in your

report. Looking at it as any kid off the street, the doctor may not

see an issue. As a Mito kid, there may be something you want to

address. As far as additional breathing tests, the doctor may feel

enough information was derived from the sleep study - that doesn't

mean she is right.

We have 3 Mito kids with apnea (and another needing the testing, but

we know he has it), treated with CPAP at night. In each case it is

obstructive apnea, due to the fact that the MITO is causing their

throat muscles to have low tone, which makes their throat collapse.

One of the kids had his adenoids and tonsils removed at 3, but still

has obstructive apnea at 13. It will definitely be helpful to go to

the ENT to see how she looks structurally.

And yes, one specialist's 'no big deal,' doesn't mean another one wont

see something significant. Has happened to us a ton of times. Hope

you get better answers from the ENT. At the very least, more complete

answers.

Rod

>

> Hi Guys...

>

> Well, yesterday Abigail went to see the respritory specialist in

> regard to her sleep study...and learned nothing. She looked in her

> throat, listened to her heart, said to schedule an ENT appointment,

> and call her in 6 months to follow up during the next cold and flu

> season. She didn't even try to do any of the breathing tests, and

> doesn't feel she will need to see her again before cold and flu

> season. Something went off inside of me, and I got the full report

> for myself. Something wasn't feeling right. This doctor saw no rush

> to see an ENT (it could wait a few weeks or more...just whenever we

> could get an apointment at Childrens) or follow up with her.

>

> This is part of what the study revealed...mind you that Abigail was

> doing really well (or so we thought) when the test was done.

> Abigail's lowest oxygen saturation was 8.75 % and her highest 95%.

> She had 65 episodes in a 7 and a half hour period. The specialist

> concluded that the episodes were " most likely " obstructive. There

> was a wealth of other information that I went through.

>

> Going with my gut I called an ENT and based on just what I told them

> they were seeing her tomorrow. Based on reading the report first

> hand...they are

seeing her this afternoon.

>

> Has this happend to anyone else? Is it common to get the " no big

> hurry " from one specialist, and then have another jump all over it?

> I am thrilled that Abigail is getting the attention and that we have

> the potential of getting somewhere faster. It just really bugs me

> that the specialist we saw yesterday had the " no big whoop "

> attitude. In truth I was stunned.

>

> I just don't get it...

>

> Thx for listening Myst