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anyone have any info and central apnea/apnea of infancy?

post #1 of 3
Thread Starter 

My 2 month old has tracheomalacia, hypotonia of the upper airway, was silently aspirating, and has central apnea/hypopnea.

 

At 3 weeks she had a tracheostomy tube put in place which solved the obstructive apnea she was having and she also had a g-tube (feeding tube) put in to solve her aspirating. The doctors were not expecting to still see she was having apnea after the trach was put in but they did see central apnea episodes on her sleep test after surgery. I guess "significant" as far as the amount but "short" for the amount of time during each episode, is what they said. They say they are not sure if she will out grow it but if she does not outgrow it by the time she outgrows the need for her trach (around 2 years old) then they want to start her on something like Topamax. I don't know why I am obsessing over this now since she is only 2 months old but I really don't want her to take something like Topamax because of the side effects.

 

Does anyone have any info and experience with central apnea, did your child outgrow it, if not were there any alternative treatments available?

post #2 of 3
I don't have any info but I'll bump this so perhaps someone will see this and be able to offer advice. Goodluck!
post #3 of 3

My DD had her trach & g-tube placed at 4.5 months following a severe apnea resulting in a brain injury.  She was on CPAP while she slept to deal with the apnea (which she only had in her sleep).  She did outgrow the apnea, although we still have the trach since she can not maintain her airway (a result of the brain injury).  We have other kids in our trach group who tranistioned out of their trach and still use a CPAP machine at night.

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