Hi. I have a son that has been diagnosed with cistic encephalmalacia. I looked his diagnosis up on here and began reading some of the post and I came across your post. Hope you don't mind that I read it. I was wondering are you still having trouble with your child sleeping?
You deserve a big bear hug! Hi, I'm new to this site. I am looking for poeple to speak with. I have 3 children,one of which has severe uncontrolled epilepsy. I don't know anyone else in my home town with a child of this nature. I was reading on your site about your child and I really congradulate you on all of the work that I know you put into a day for him/her. I have had experience in working with severely disabled children. I also have a severely disabled brother who has to have 24 hour care. Anyhow, I hope that we can become friends. Sincerely, Supermomma531.
Hi, my son had laryngomalacia as well. That was about 13 years ago and he had 2 surgeries to open up his airway and they removed his tonsils and adnoids and additional tissue. They considered putting in a trach but after the second surgery things started to get better. You know as he gets older his airway cartilage will become more ridgid and that helps so the tissue won't colapse and he will get more 02 as he inhales and exhales. Although I had to talk to the ENT to please give it a chance for the tissue to harden up before a trach was put in (which they didn't have to). My son did have to be on oxygen 24/7 for the first 4 years of his life. My son is now 18 and has no problems regarding this issue. I know it's hard..my heart goes out to you..
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