A great place to start Disorder information source Rated and Reviewed Sleep Links Entrance to all monitored Sleep Forums Search all of Sleepnet.com


Sleep Apnea
Forum130 Posting


Archived Apnea Forum130 viewing only. To post go to the Apnea Forum Homepage.

Re: Child with Central Sleep Apnea

Posted by NikkiB on June 06, 2006 at 19:27:42:

In Reply to: Child with Central Sleep Apnea posted by banda on May 23, 2006 at 05:51:50:

Hi!

I have a condition called Congenital Central Hypoventilation Syndrome, which is caused by my neuromuscular disease called Mitochondrial Cytopathy/Myopathy. CCHS and Central Sleep Apnea have a lot of similarities, except with CCHS the patient stops breathing day and night, not just when sleeping.

I have had it since birth. Most children with CCHS are placed on ventilators day and night now, but when I was a child, it was not standard practice because doctors believed the child would ‘grow out of it’ (and to their credit, some children do). Instead I used an infant apnea monitor which I wore until I was 22, and it would alarm when I stopped breathing, which was hundreds of times a night.

When I was 10 (I am 25 now) a few doctors across the country started using CPAPs on children, and I was one of the first kids to be placed on it. We learned then what is common knowledge now - that CPAP does NOT control CCHS or Central Sleep Apnea. I was switched a few years later to a BiPAP ST, and it worked very well for me during the night. During the day I just had to think about breathing, and be reminded when I would quit.

Since a stroke when I was 22, I was placed on a Bipap ST 24 hours a day, and when I was 23 I was placed on the ResMed VPAP II ST-A, which has more features than your typical BiPAP ST, including tidal volume and other things.

There are many children in the non-invasive ventilation community that use Bipap ST's, VPAPs, and volume ventilators with a nasal mask, some for 24 hours a day, and some just when sleeping. The youngest I know of right now - I am friends with her parents - is 1.5 yrs old and uses it successfully. It is very possible to get a toddler to use a Bipap, it just takes some time, some patience, and a really good pediatric pulmonologist.

I would recommend a BiPAP ST instead of a cpap or Bipap S. The Bipap ST will give your child a pre-determined number of breaths per minute, and allow them to take breaths on their own.

I would try the BiPAP ST before trying the medication, but everyone is different.

If you have more questions, please let me know, and I will help if possible.

Nikki


There are many children now in the non-invasive ventilation comm

Follow Ups:


Archived Apnea Forum130 viewing only. To post a new topic go to the Apnea Forum Homepage

  • IMPORTANT : Information not intended as medical advice. If you suspect that you have a sleep disorder you should seek care from a qualified professional. Read Terms of Use.
  • The Sleep Forums are not to be used for commercial purposes.
  • Commercial products and services are not endorsed by Sleepnet.com.
  • Sleep Deprivation due to Sleep Apnea and insufficient sleep are common and can present as insomnia, narcolepsy, or idiopathic hypersomnia. In infants and children sleep problems commonly present themselves as ADD or ADHD.


Copyright ©1995-2006 Sleepnet.com., All rights reserved