Articles I Have Written
- The Best Books for Kids with Hearing Loss
- Sleep Studies for Kids
- Adjusting to Hearing Aids
- Free Resources for Deaf and Hard of Hearing Children
- First Steps When Baby Can't Hear
- When Baby "Refers" on the Newborn Hearing Test
- Water Sports with Hearing Aids
- What is the Newborn Hearing Screen?
- The Best Hearing Aid Accessories for Kids
- Choosing Eyeglasses for Kids
- Great Hearing Loss Simulations
Thursday, March 4, 2010
An Informative Visit with Dr. B
We had our appointment with neurologist #2 today, and it was a much better visit. She was much more thorough with Nolan's medical history, and had a clear sense of direction for the treatment of Nolan's central apnea. We also learned a few new things today- not that they are really "new" things, but confirmation of things we have always noticed with the little guy.
As far as the central apnea, we are on the right course. The MRI must be done first- to absolutely rule out a Chiari (even though this is unlikely) and to verify there is nothing amiss with Nolan's brain. She also agreed that a tonsillectomy was a good idea, to get rid of the obstructive component.
We did learn that central sleep apnea (CSA) is rare enough that there really isn't a standard treatment protocol for children with CSA following a tonsillectomy. We have two options- to forgo the Tylenol with Codeine in favor of regular Tylenol, or to try and obtain an apnea monitor for those two weeks from Pulmonary and keep the little guy on the codeine. Codeine is a respiratory suppressant, so it isn't really safe to have him on the medication without a monitor. The neurologist is going to talk to our ENT to plot a course of action.
We are going to wait a full three months after the tonsillectomy to have a repeat sleep study. This is to give Nolan time to heal completely, and for all residual swelling to dissipate. We will do the follow-up sleep study in early August, with a follow-up appointment the week after. If the central apnea is still there in measurable quantity, we will pursue artificial ventilation at night via V-Pap (a special version of biPap for central apnea).
As far as the rest of Nolan's symptoms, she does feel that another visit to genetics is warranted. We won't go back to the original geneticist, because he was completely off base.
Remember the worry about frontal bossing? Yeah. The neurologist confirmed that it is there. So we can add that back to the roster of symptoms.
Also, remember the head lag? She did a brief work-up and told us that he has some decreased muscle tone (hypotonia) in his arms and trunk. It is mild, but another piece to the puzzle.
I do have the name of a geneticist at Cleveland Clinic, and I think we'll attempt any further genetic work-ups there. We haven't had much luck at Buffalo Children's (CHOB).
For a brief re-cap, here's the "list of symptoms:"
Congenital moderate hearing loss
Posterior urethral valves
Failure to thrive (resolved)
Mild Delayed Gastric Emptying (DGE)
Mild frontal bossing
Elevated AST (liver or muscle enzyme marker)
Periodic temperature fluctuations
Periodic rash on trunk
Chronic otitis media
Severe obstructive sleep apnea
Severe central sleep apnea
Dr. Block called this "multi-system involvement," and does believe a syndrome is at play. The question is, which one?