With so many recent findings (new, conductive component to Nolan's hearing loss, obstructive sleep apnea, central sleep apnea, staring spells), I have been creating a list of questions for our ENT. I don't want to miss any information or get sidetracked, and I find that writing questions down before an appointment helps keep my mind focused during the all-too-short 30 minute appointment.
The current questions are:
Additional Hearing Loss:
- Could a microscopic perforation really cause 30dB of hearing loss?
- Has the perforation healed?
- How can we determine ear-specific bone conduction levels, since the current testing only represents the "better ear?"
- If the perforation hasn't healed, will we need to intervene in any way?
- If a conductive component remains after resolving the perforation or any potential fluid, will we need to adjust Nolan's hearing aids? Will we need to investigate the cause of the mixed loss further (i.e. middle ear exploration)?
- Should we place a third set of PE tubes if we're going to do a tonsillectomy/adenoidectomy?
- Are three apneic events enough to recommend a tonsillectomy and adenoidectomy?
- If a tonsillectomy is recommended, will the required pain medication cause a problem with Nolan's central apnea?*
- Will Nolan be kept in the hospital overnight if he has a tonsillectomy/adenoidectomy? This is a concern because of his low weight and the lack of pediatric facilities in our local area.
- What are the risks of general anesthesia for the tonsillectomy, considering the central apnea?
- What are the treatment options for a young child with central sleep apnea?
- Should he have an apnea monitor or a pulse-ox monitor at home?
- Is Arnold-Chiari a possibility, since we had a normal CT scan and a normal MRI?
- What questions should we ask the neurologist about this condition?
- What other professionals should be involved in Nolan's care?
- What are the risks and long-term effects of central apnea?
- Is this a permanent problem, or will Nolan outgrow it?
- By the way, he's also been having staring spells and we had an EEG performed recently. We do not have the results of this test yet, but there is the suspicion of absence seizures.
*We've been told that Nolan should not have any sedatives in any form-they could interrupt his "arousal process" with the central apnea. If a person with central apnea takes a sedative, they may not be able to wake up to start breathing again.
3 comments:
very comprehensive list. I'm impressed. There are always so many questions, aren't here.
I'd never heard of Chiari before; I just googled it. How much of him was imaged in the CT and MRI? Based on the little that I just read, it seems that if the back of his head and the top of his spine were imaged properly and showed no malformation, then it couldn't be that.
Julia, I doubt Chiari because his MRI at 11 months old showed unremarkable "cerebellar tonsils." So unless a Chiari can be acquired or the original MRI was read incorrectly, a Chiari is highly unlikely.
Our ENT isn't sure about the whole Chiari thing because it isn't her specialty. She did order an MRI to get the ball rolling (and to look for degenerative issues that could be causing central apnea).
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