My son is 2 years old. He had a sleep study in May which showed severe obstructive and central sleep apnea with his oxygen going down as low as 71% during the apnea episodes. He had his tonsils and adenoids out at the end of May. He had a repeat sleep study done last month and it showed that his apnea episodes had reduced by 35% and his oxygen was only falling down to 84%. This is quite an improvement but he is still considered severe. Due to his age the doctors are at a loss of what to do from here. He is scheduled for a sleep study with titration and then he will begin using C-Pap. Our ENT has suggested that we do not use C-Pap as she says it is not effective for children under 4 years old and that we should just do nothing until he is at least 4 or 5. I do not think I can go 2-3 more years without sleep. Does anyone have any experience with C-Pap for child of 2? Did it help your child?

He is having an MRI at the end of this month to make sure there is nothing neurological causing the apnea events. He has mild metopic craniosynostosis which is premature fusion of the metopic (forehead) suture. Sometimes cranio can cause chiari malformaiton which can cause apnea. I had to push and push for the MRI and it was only ordered in an attempt to shut me up.

Any help you can offer is greatly appreciated. Thanks


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Mom to 2 year old non-sleeper!! plus three sleeping children!!

You are certainly on the right track. It will be interesting to see if he has a Chiari. My son  has "low lying cerebellar tonsils" but not a chiari and NOT the cause of his central sleep apnea.

My son is a small three year old and just started cpap 2 weeks ago. He already wears it 11 hours/night and is doing great! If we skip a night or two for congestion or other random reasons, he reverts right back to 4-5 hour naps and 14 hours/night of sleep..With the cpap, he sleeps 11 hours/night (exactly...so weird) and is giving up his naps (takes a 2-3 hour nap every couple of days).  

I would find a sleep specialist, probably neurologist since he has craniosyntosis.  ENTs are NOT sleep specialists and shouldn't be treated as such.  

Note that cpap is not FDA approved for anyone under 72lbs, but we only had to sign a waiver to get Isaac's (he weighs 32lbs soaking wet and fully dressed).  

Other changes in Isaac have been: His speech is much improved, including use of conversational language and annunciation of his words, wants to play WITH his friends and not just around them, and is all in all a different kid than he was this time last year!

Mommy guts are usually right, at least about the general stuff, so run with it.  Keep asking questions and we'll do our best to keep answering them!

Tiffany...Mom to Isaac..My 3-year old "hose head"...sleeping with it 11 hours a night for 2 weeks now!!! and to Esther Rose, who I think sleeps like a dream, but is seeing neuro tomorrow "just in case"..

He is being seen by a sleep specialist and also an ENT, a pulmonolgist, and a GI for reflux. I am just so hoping the MRI goes well and shows something definite so that the doctors can decide on a plan of action.


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Mom to 2 year old non-sleeper!! plus three sleeping children!!

I don't want to discourage the MRI, but know that it won't have a lot of direct influence on his treatment of apnea.  If he isn't having any other symptoms of a chiari, it may not be worth the risk of the anesthesia for the MRI. In our case, it was worth it when he was really little because he had several small symptoms of chiari, but now does not. He has repeat MRIs each year until 3 consecutive ones turn up normal.  

I would caution a couple of things with the anesthesia for MRI...First, find out if they use general anesthesia or if they use conscious sedation. If they use general, know that versed can aggravate central apnea as it causes the brain to relax too much. If they use conscious sedation and you are willing to sleep deprive him for almost 16 hours before his MRI, they can use a  half dose and it will work long enough for them get the test done, without as much risk of apnea.

Handing Isaac off to each of his MRIs has been one of the most difficult things we've ever had to do as parents.  Know with central apnea the risks are very real.

I don't say this to scare you, but to make sure you are weighing the benefits versus the risks. If I had to do it over, we would not have ever done the MRIs until he was older and showed more symptoms. As of now, he is symptom free for Chiari, but because we have the results we have, he requires a repeat each year.  

Were it me, looking back to 1 1/2 years ago, I would have pushed for the treatment of the apnea and skipped all the additional testing. It wasn't worth it to us and we are now very particular about what we will and will not allow to be tested on our daughter.  

I do wish you the best. Please feel free to ask any questions you can think of. I'd be glad help you find as many answers as possible, as are lots of other moms who have been there and done that much longer than I.

Tiffany Acuff....Mom to Isaac, who insisted on sleeping with his "elephant nose" for his nap yesterday!! and to Esther Rose, who has just been prescribed her first sleep study with full EEG and End Tidal CO2...should be fun!