Hello

I will do my best to make this brief and please excuse I am very much a newbie to all of this.
Our son had self diagnosed sleep apnea at an early age. All our doctors felt as he did have very very large adenoinds and tonseils to remove them and this would solve his problem. Well it didn't he still snores and I kept pushing our doctor but they felt is was allergies etc...so I finally got a sleep study done indicating that he had 9 obstructive 1 mixed and 33 central. So needless to say I am freaked out. Especially since the doctor did not give me much guidance. So we are going to revisit the ENT to get a rhineoscope done to ensure there is no more obstructions or regrowth but what concerns me is the central....I can not find much on it to read about but I am not looking forward to visiting the peadiatric neurologist I have no idea what to expect. Our son had his tonseils and adenoids removed at 2 and he is now 4 1/2 . I have so many concerns and I feel so overwhelmed.
So if anyone has info and would love to share I would love the read it.
Thanks
Susan

coucci wrote:

Hello

I will do my best to make this brief and please excuse I am very much a newbie to all of this.
Our son had self diagnosed sleep apnea at an early age. All our doctors felt as he did have very very large adenoinds and tonseils to remove them and this would solve his problem. Well it didn't he still snores and I kept pushing our doctor but they felt is was allergies etc...so I finally got a sleep study done indicating that he had 9 obstructive 1 mixed and 33 central. So needless to say I am freaked out. Especially since the doctor did not give me much guidance. So we are going to revisit the ENT to get a rhineoscope done to ensure there is no more obstructions or regrowth but what concerns me is the central....I can not find much on it to read about but I am not looking forward to visiting the peadiatric neurologist I have no idea what to expect. Our son had his tonseils and adenoids removed at 2 and he is now 4 1/2 . I have so many concerns and I feel so overwhelmed.
So if anyone has info and would love to share I would love the read it.
Thanks
Susan

Susan, don't get freaked out.  People of all ages and sizes can have this problem.  It sounds like you have take the steps to make sure there were not other health reasons.  But once this is done, get him set up with a c-pap and mask.  It is a bit of an adjustment of course, but he will feel so much better and you will have provided him with a better future since SA tends to effect every area of life.  Academically and physically.  Your body and mind just cannot function properly when you are sleep deprived.  There are many good sites to look though on the forum index here, and there are others here who have children with SA.  Don't panic, be patient.  You have come to the right place for information.  This is a highly treatable problem.


_________________
REMstarplus, M Series with C-flex and heated humidification
C- Pap setting of 10
ResMed Mirage Quatro full face Mask
Sleep study showed 36 events per hour
Location, Nebraska

Susan,

It's okay to panic a bit...That's what drives the mommy instincts..But please find some reassurance here.

Our son is 3 and has central sleep apnea and has for all of his life.  We have found neurologists to be our best advocates for the care of our son.  Do not be afraid of them. They aren't there to mess with his mind or to just drug him up and call it a day.  They will help you to find a good solution for your son.

Do you remember what his sats did overnight?  How's his energy level?  What's his growth like?

Our son, Isaac, started on c-pap in September and is doing famously with it! He insists on sleeping with it every night and sometimes for his naps. He went from needing a 4-5 hour nap daily to a 2-3 hour nap once or twice a week!  His neurologist is the one that finally figured out what he needed and gave it to him and now he is thriving. His speech has caught up and his language development isn't far behind. He's gained 2 lbs in a month and grown 2 inches in three!

At the neurologist you can expect a thorough physical examination, some developmental examination, a lot of conversation (bring things for your son to do!), and an opportunity to ask any questions you may have. I highly recommend writing down your thoughts and questions as you think of them and bringing them with you so that you know you got all the answers you were looking for.  Make sure to question the possibility of treatment without medication, as many children are treated successfully with c-pap or bi-pap and even v-pap.   We have loved both our neurologists and Isaac looks forward to his visits with them.  Please don't be fearful of this visit.

Please keep asking questions. The more information you can provide us here, the more we'll be able to help you. If you have a copy of the sleep study report and are willing to share those details, we might be able to help you make some heads or tails of it, too!  

Know you are not alone. We've knowingly been walking this road for 3 and a half years and have only recently gotten our son the treatment he's so desperately needed!  Previously, he had a pulmonolgist responsible for his care and they were unconcerned and unwillingly to treat the apnea.  Be your child's advocate and find other doctors who will advocate alongside you.

Tiffany...

Mom to Isaac, my 3 year old hosehead who has learned to read!! and to Esther Rose, my 7 month old baby girl, who sleeps on no schedule at all!