Michael has Ondine's (ConCentral Hypovent Syndrome

Michael's mom · #1 08-21-2002, 10:03 PM

Michael's been in the PICU for the last 2 weeks. They told me he has Ondine's Curse!! or Congenital Central Hypoventilation Syndrome, sometimes called Primary alveolar hypoventilation or central sleep apnea. The bottom line is.....he will NEVER be able to breath on his own at night. This news is so devastating. Forever, Ben and I thought that Michael would get decannulated at 2 or 3 at the worst...now he will probably always need the vent at night. How do I live with this diagnosis. I thought my worst nightmares (Ben dying and Michael having respiratory arrests/trach) would be over if I could survive the next few years. Does anyone have anything good to say about this diagnosis?

Thanks in advance... Sue

Ann · #2 08-21-2002, 10:48 PM

Sue,

All I can say is I know how you feel. Â*When my son was trached and put on the vent over three years ago all the doctors had me believing that he'd be off the vent in less than a year. Â*Well, it appears that he will also be on the ventilator for the rest of his life due to an undiagnosed neuromuscular disease. Â*I can't let myself think too far into the future regarding what his and our life is going to be like. Â*I do know that for your son's condition there is the option of a diaphramatic pacer. Â*I know a little girl in St. Louis who has the same condition as Michael and she has been evaluated by doctors in Chicago for the pacer. Â*

As to Margaret, I want to thank you for your input as to what it is like being on a ventilator. Â*I worry so much about my son and what his life is going to be like. Â*Unfortunately he has had the trach and been on a vent since he was 3 months old so my biggest issue is that he hasn't acquired speech yet. Â*I think I could live with him being on a vent if he could just talk. Â*But it is good to know that it's not the worst thing in the world to have. Â*Thanks so much!

Ann

p's mom · #3 08-22-2002, 09:48 PM

Sue-
I'm so sorry for all you are going through. Know that you are in my thoughts. I think and pray for your family often..

I don't know if you use the listserv on this page but I just started about a week ago. Today I saw 2 posts about
Congenital Central Hypo Ventilation. Is this the same thing as what Michael has? If so you can go to the Archives and see these posts and maybe talk with these mothers. One mother posted a web site :
http://www.newtechpub.com/sleep/apne...snore/cchs.htm

I hope this is helpful and someone who can help answer some questions and give some support to you about this condition.
If I can help let me know. I know how frustrating it can be with a condition and you just want someone who's gone through or is going through the same thing so you can share.

Take CAre
P's MOM; Cory

Michael's mom · #4 08-26-2002, 07:47 PM

Thank you ladies so much! It's wonderful to hear from the adults with trachs especially. This may sound weird, but I guess I thought having a girlfriend/wife and being intimate was going to be out of the question for him and it made me feel sad and like his life was going to be incomplete in some way. You ladies made me feel wonderful ! Take care and thanks again! Hugs, Sue

Brandon & Angel · #5 08-26-2002, 09:08 PM

Sue

You know my feelings for Angel so I do not need to go there

There will be the rite person that comes along......

B

Michael's mom · #6 08-28-2002, 08:07 PM

Hi, Brandon!!! Thanks for reminding me! You're such an "Angel"!!!! Hugs to you and Angel, Sue

indiemum · #7 10-24-2002, 03:34 PM

Hi i'm fairly new but I just love how supportive everyone is, it makes my heart swell to see the way you all respond to each other's needs. I just wanted to say that I think children are the most resiliant creatures on earth and no matter what anyone says I think the child will determine the outcome. I think a lot of doc's go on experience (of course) and statistical data but miracles happen every single day, just look at Aaron's page. Never underestimate the power of love and faith. My family will be crossing our fingers for you!!!

Kelly