Pulmonologist vs. Neurologist (CSA)

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Pulmonologist vs. Neurologist (CSA)

Postby leahlefler » Sun Feb 21, 2010 10:27 am

I'm still making my list of questions for the neurologist, but I have read that many people here are under the care of a pulmonologist as well.

What does the pulmonologist do (vs. the neurologist)? Should we ask for a referral to a pulmonologist when we see our neurologist?

We were originally scheduled with the neurologist because of Nolan's "Staring spells" but found the central apnea in the meantime (and he has a normal EEG, so now our primary concern is the CSA). Should we be seeing a pulmonologist in addition to a neurologist? Does the neurologist make the referral to the pulmo?

Thanks!
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Postby sleepydave » Sun Feb 21, 2010 1:44 pm

I would insure that whoever you choose has a superior understanding of the current standards of the scoring of pediatric sleep and will review the raw data.

I would question whether some of these patients presented here actually have "central sleep apnea" (big deal) or just a few "central apneas" (not necessarily a big deal, and often totally benign).

For instance, in this particular sleep study:

http://apneasupport.org/viewtopic.php?p ... red#118036

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Postby leahlefler » Sun Feb 21, 2010 2:57 pm

Sleepydave,

Our son had 161 respiratory "events" with desats of 3% or more. He had 60 central apneas with desaturations to <90%, 3 obstructive apneas, and 41 hypopneas. He has been diagnosed with severe central apnea. His lowest O2 sat was 79%- I'm not talking about a "few" central apneas.
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Postby leahlefler » Sun Feb 21, 2010 3:03 pm

Also, Nolan had his sleep study done at a children's hospital and had a pediatric neurologist specializing in sleep disorders score his data. We're confident in the data- just need to know what specialists we should be seeing.
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Postby sodifficult2sleep » Sun Feb 21, 2010 11:55 pm

Our referral to the Pulmonologist came from our pediatrician after having concerns about my daughter's higher than normal "End tidal CO2". In the meantime, our Neurologist has ordered an MRI and 2nd sleep study that we are waiting on. I agree that both Neuro and Pulmo Dr.s should be trained in pediatric sleep disorders. I guess it just depends on what your child presents with and your concerns for testing for different types of disorders/syndromes since Pulmo specializes in lung disorders vs. Neuro-brain.
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Postby TiffanyAcuff » Mon Feb 22, 2010 9:18 am

sleepydave wrote:I would insure that whoever you choose has a superior understanding of the current standards of the scoring of pediatric sleep and will review the raw data.

I would question whether some of these patients presented here actually have "central sleep apnea" (big deal) or just a few "central apneas" (not necessarily a big deal, and often totally benign).

For instance, in this particular sleep study:

http://apneasupport.org/viewtopic.php?p ... red#118036

sleepydave


Dave,

I want to clarify that the sleep lab that ran this particular study and the pulmonologist that was "caring" for him, were not even close to knowing what was really going on. His pulmonologist at the time only understood central sleep apnea in conjunction with a Chiari malformation or caused by reflux, neither of which Isaac had. When we changed sleep doctors (He was nearly 3 years old and still sleeping more than 17 hours/day), we were shocked to find out that he should have been treated from when he was very young...

He did not have CCHS, which we were quite thankful for. In fact, all of his random "health" problems literally disappeared within a month of him sleeping with his c-pap at night.

The sleep study that you linked back to was inaccurate and poorly read. Turns out several families we've met in the area have had the same experience...

Just wanted to clarify...

Tiffany..
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Postby TiffanyAcuff » Mon Feb 22, 2010 9:23 am

....As for the discussion about whether your kiddo should see the pulmonologist or the neurologist. I would say this...

Find a doctor who specializes in sleep medicine, given that his is central in nature, I would hope to find a neurologist, but would certainly see a well qualified pulmonologist, too..

Isaac's first sleep specialist was a pulmonologist and I only met the man once in the 2 1/2 years Isaac was under his care. And he effectively said that I was overreacting and that there was nothing wrong with my son...

Isaac's current sleep specialist is a neurologist who was flabbergasted that something hadn't been done sooner for Isaac, especially with his slow growth and language issues and exhaustion.. There is a pulmonologist that also follows kids in the sleep clinic, and I trust her, too. She actually watches Esther Rose to make sure she doesn't develop something like Isaac. I trust both of them equally and would happily switch him over the pulomonologist's care if his neuro ever decided to stop seeing patients...

I hope that helped somewhat....

Tiffany...
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Postby leahlefler » Mon Feb 22, 2010 10:30 pm

Tiffany, thanks for that! We're seeing a neurologist on March 1, so as long as he will be able to lead us in the right direction, I'll be OK. We just have so many seemingly unrelated issues (hearing loss, posterior urethral valves, severe GERD, mild DGE, and now central apnea) that it would be nice to get a comprehensive diagnosis one of these days!

I'm stressing now because our ENT had called last week and said they booked him on March 23 for a sedated MRI at Buffalo Children's. Then Buff. Children's called today and said they needed to schedule his MRI and they didn't have an opening until the end of April. I have several phone calls placed at the moment to try and sort this one out! It is just stressful to mess with all the clerical errors when you want to know what is going on with your baby.

We definitely want the MRI done before we do the tonsillectomy/adenoidectomy/PE tubes on April 13 (if we even go ahead with that- I want to talk to the neurologist and get his take on the situation first).

Nolan doesn't sleep at night (duh) and he came into our room and I could hear him every time he stopped breathing. The apneas aren't very long, but with desats like they're seeing.. it makes me concerned. Especially since this seems to be a new development (it wasn't there at birth, and wasn't noted the last time we had a surgery performed- in August).
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Postby TiffanyAcuff » Tue Feb 23, 2010 9:02 am

I will encourage you to get some sleep at night...He may be desatting, but he does spontaneously breathe on his own (Isaac used to do the same thing, and when he doesn't sleep with his cpap in our bed, we both notice everytime he stops...)..

I will also encourage you that when we got Isaac's sleep issues resolved, many of his "unrelated" health problems seemed to just disappear. Now obviously that won't happen for some of Nolan's, but it may for a few of them...

Tiffany
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Postby leahlefler » Tue Feb 23, 2010 10:46 am

We are trying to sleep. The MRI scheduling snafu had me stressed last night, but thankfully the ENT's office called and reaffirmed that he is scheduled for the 23rd. I bet you're right about some of the health issues- I'm sure that some of NOlan's eating issues (not a big fan of food in general, has dysphagia sometimes where he chews food up, but spits it out instead of swallowing it) and his staring episodes will reduce after we get the sleep issues taken care of. The GERD, PUV's, and hearing loss will stay, but at least we can take care of the central portion. I'm very anxious for our neuro appointment on Monday!
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