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Scared-Central Apnea

Posted by on Jan. 29, 2011 at 11:27 PM
  • 14 Replies
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My daughter Bayleigh has Angelman Syndrome. We just got our last sleep study results in and they were not good. The doctor has diagnosed her with Central Apnea. This is a type of sleep apnea where the brain is involved. Bayleigh had 21 neurological episodes in a 7 hour period where her brain told her it was ok for her to not breath while she was sleeping. During this period her oxygen levels dropped to the 70's (should be in the high 90"s). She will have to now sleep on oxygen but waiting to hear from her pulmonologist to see if there is anything else that we need to be doing.

Has anyone else had any experience with this? If so did your little one out grow it or still has episodes? Thanks

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by on Jan. 29, 2011 at 11:27 PM
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Replies (1-10):
zolanmel
by Group Admin on Jan. 30, 2011 at 12:49 AM

My DD is 2 (we will have the new sleep study results the 8th hopefully) And was diagnosed with Central apnea. She wasnt put on anything even tho her Neuro said she should have been. its scarey.

Ive actually Watched her stop breathing for 5-8 seconds!  Ive woken up out of a dead sleep with her not breathing.   

we believe she still has central apnea. 

busymom3910
by on Jan. 30, 2011 at 10:02 AM

Our ENT doctor told me that because she already has a neurological disorder she could have more episodes a night than the normal. I witnessed my first episode last night and I will be calling again in the morning. I know we are getting oxygen but also waiting to hear about an alarm that will go off if her levels drop below a certain number. Did your doctor tell if this is something that will go away in time or is it permanent?

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tyheamma
by on Jan. 30, 2011 at 1:20 PM

My baby has central apnea. She's currently on a BiPAP machine (similar to CPAP except with a secondary pressure to mimic breathing to protect against the effects of central apnea). She's 8 months old and hasn't yet outgrown it.

We have an apnea monitor and we've learned CPR. Both have been incredibly useful.

As for permanence... it could go away, or it could be permanent. Sorry no answers there.

zolanmel
by Group Admin on Jan. 30, 2011 at 3:17 PM

The sad fact is they do not know. They do not know why she is having central apneas   . so they cant say.  I plan to ask my neuro to look more into the 8th. My DD has Every dang sign of CP and the tramatic birth,and a period where she choked on us and her o2 levels were very low.    but she also has A floppy airway that was suppose to have corrected itself no later then 15 months. she is 28 months with the floppy airway!! ITs not going away!

 Our first sleep study we knew about obstructives which we fixed that problem we removed her tonsils. but then i found out later after her sleep study was sheduled already ( i found out in december) that she had ALOT of central apnea spells!!!!  She had 7 obstructives in a hour but alot more centrals!!!   

so we are by passing her ENT and doing this through pulmon and  Neuro. Pulmon says she  doesnt need a monitor and neuro says she does.

Ill let u know what they say the 8th!

 and ill pray for you guys! Apnea can be scarey!

zolanmel
by Group Admin on Jan. 30, 2011 at 3:19 PM

Also i would Get your neuro to go over the  sleep study! in my case the ENT failed us..

busymom3910
by on Jan. 30, 2011 at 8:57 PM


Quoting zolanmel:

Also i would Get your neuro to go over the  sleep study! in my case the ENT failed us..

We have a wonderful ENT and Pulmonologist. Have already asked and waiting to hear if we need to bring in her neurologist. All of Bayleigh's doctors are at Vaderbilt Children's Hospital so it's easy to get everyone on board. The neurologist that is part of the research project at Vanderbilt for Angelman Syndrome (Bayleigh is part of this project) is already aware of the sleep study results and is looking at it too.

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busymom3910
by on Jan. 30, 2011 at 8:59 PM


Quoting tyheamma:

My baby has central apnea. She's currently on a BiPAP machine (similar to CPAP except with a secondary pressure to mimic breathing to protect against the effects of central apnea). She's 8 months old and hasn't yet outgrown it.

We have an apnea monitor and we've learned CPR. Both have been incredibly useful.

As for permanence... it could go away, or it could be permanent. Sorry no answers there.

What does this stand for? I asked my ENT if she would need CPAP and he said no but have not heard of the other. Have they found a reason why your little one has the episodes?

http://lb2f.lilypie.com/vhSMm5.png



http://lb4f.lilypie.com/hmBjm5.png


tyheamma
by on Jan. 31, 2011 at 6:29 PM


Quoting busymom3910:


Quoting tyheamma:

My baby has central apnea. She's currently on a BiPAP machine (similar to CPAP except with a secondary pressure to mimic breathing to protect against the effects of central apnea). She's 8 months old and hasn't yet outgrown it.

We have an apnea monitor and we've learned CPR. Both have been incredibly useful.

As for permanence... it could go away, or it could be permanent. Sorry no answers there.

What does this stand for? I asked my ENT if she would need CPAP and he said no but have not heard of the other. Have they found a reason why your little one has the episodes?

Bilevel. It's CPAP with two pressures. And no reasons, because that would be too early.


Pixiedust8184
by on Nov. 2, 2011 at 9:47 PM
My 18 year old DD has multiple neurological problems including central apnea. We tried doing nothing then cpap, bipap, and now she uses an adaptive servo ventilator with a mask just like a cpap. She has had amazing results with this. Her apnea/hypopnea index is normal for the first time in many years. Her neurosurgeon, neurologist, and pediatrician all thought I was over-reacting about her apnea. But then I took her to a sleep specialist who is a pediatric neurologist who specializes in sleep disorders. She was the first person to understand the impact this was having on my daughter's life and on my anxiety level when she was sleeping. Not treating apnea can put stress on a person's heart, contribute to them being overweight and also cause more issues with school and processing as well as headaches. I know because I also have apnea and have had problems with these symptoms. Listen to your gut and do research on doctors in your area who treat children with apnea. I live in the Atlanta area and we have Fusion Sleep but your children's hospital should also have a specialist.
karamille
by Group Admin on Nov. 3, 2011 at 10:27 PM

I have a friend with CSA and she is one BiPAP too.  She she forget to breathe out, it will suck the air out of her lungs and breath back in for her until the brain takes over again.  She said it was a weird feeling the first few times it happened but then she adjusted to it and it doesn't interupt her sleep at all. 

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