Trach for sleep apnea in 6 y/o?

[Michael's mom]

Knowing a little about autism, and a LOT about trachs, you will definately want to avoid them if you can. On http://tracheostomy.com/ which is the main page for this site, you can read up and watch scenes of changing traches, etc. Sleep apnea isn't something to play with, either, but a trach AND autism...maybe your child isn't so bad, but my cousin's child would rip it out, over and over. So if they're going to rip off a mask or rip out a trach and have an open hole in their throat....hmmmm...I'm go with the mask. Maybe the Dr doesn't understand autism. Re: the XL uvula, why can't you have surgery to correct this? Oh...the positive side to a trach - if there IS one - is that you will qualify for home nursing then from Medicaid regardless of your income. The nurse can stay with your daughter through the night, so you won't have to worry about her pulling it out IF you get nurses. I'm quite sure you won't get that without the trach. Let us know how it goes. I hope you don't have to join our "trach club" here - but if you end up having to, this is a great source of support, so welcome! Hugs, Susan

[J&Jsmomee]

I found your post very, very interesting. I too have a 6 yr old who is mildly autistic, developmentally delayed and is having a sleep study later this month to rule out sleep apnea. Although the trach hasn't been mentioned (my youngest son has one, but not the older one I'm talking about) I've wondered if that is something that will be mentioned based on the study results. Knowing what I know now, I'm scared, but not for the same reasons. The trach is a HUGE deal, but I'm not as concerned about the trach, as I am the possibility of a trach in my son. He would definitely not transition well to this and his level of awareness, but lack of judgement would make it very hard to keep him from messing with it. Anyway, I understand both sides of this and would love to chat, please e-mail me JPsmomee@sc.rr.com

[Olga]

I can only answer your question about the talking issue. If the upper airway is not obstructed I canot see why your daughter shouldn't be able to talk. Grace's airway is opening up more and more and she speaks very clearly. She simply puts her chin over the trachy to divert all the air up past her vocal cords. This she worked out for herself very quickly.
I hope that it doesn't come to a trachy, but as you will have seen from the other postings on this board most of our children would not be here without one. Good luck. Olga

[cariaad]

Altho we dont have a formal dx yet, my almost 3 year old has MANY autistic traints and tendencies. She deals with having her trach just fine. Of course, she's had it since she was 4 months old. Once in a while she goes thru an exploratin phase and wants to pull or tug at it, I just tell her no-no and redirect her. So far, it works. About the post that mentioned medacaid and nursing--I believe it depends on what state you live in. In Oklahoma, we dont qualify for nursing and we have a trach and a g-tube. State budget cuts have reduced an already pretty thin program. But you can take care of it yourself, once you get over the shock period it becomes second nature. I would rather have a trach than have the constant worry of sleep apnea causing either brain damage from lack of O2, or even death. If your daughter is already verbal, she should be able to adjust to speaking with the trach, either capped or with the pmv. Good luck and keep us posted on what you decide. Deb