New to the site and very excited :)

dommyjohn · #1 04-22-2009, 08:18 PM

Hi everyone,

My name is Mel and I have a 16 month old boy named Dominic who has had his trache since he was 3 months old. It's probably easier if I just put up a link to our story from the trachkids website. http://www.trachkids.org/members/dommyjohn

I have been looking at both this site and the trachkids site while waiting for my registration to be approved and I must say, I'm so excited to have finally found a link to a group of trache carers with so much experience, knowledge and understanding.

We have had a hard time of it lately and are about to head to Sydney from Canberra (Australia) to have a sleep study done. Hopefully they will find some answers and a treatment for what appears to be central apnoeas. The Sleep Doctor we are under mentioned that sometimes children with traches develop central sleep apnoeas but they are unsure why. I was wondering if anyone has had any experience with this.

I look forward to getting to know you and swapping stories with you all.

lynn · #2 04-22-2009, 08:50 PM

Hello and welcome to the site.

kirafaesmom · #3 04-22-2009, 09:03 PM

Welcome! I'm so glad you found us.....and yes, there's a LOT of parents here with similar experiences. We are actually in the very same place right now. In fact, today was supposed to be our initial eval with the sleep clinic. Kira's pediatrician, ENT, Pulm, and Neurologist all feel that Kira has central apnea. I'll be glad when we get some answers, as I'm sure you will be too. I sure hope you are able to figure out what's going on.

dommyjohn · #4 04-22-2009, 09:28 PM

Thanks for your support. I have already learned a lot.

We have our sleep study on Monday and I'm just not sure where it will go from there. You think we'd be used to living in the 'unknown' when it comes to his health but I still struggle with it sometimes! At first I thought they'll just put him on C-PAP but since he still has his trache, I was told that's unlikely as it's not a common thing because the machines aren't designed (or covered by insurance) for traches.

Are you still having your study done today? I'd be interested in hearing how you go. I've been told they may not be able to find an answer as there's not a great deal known about central apnoeas in children and there are many different causes with just as many treatments. I guess I'm trying to get an idea of the possible treatments though, so I can start to mentally prepare. Realistically, I know we won't know anything more until he has his sleep study. Sometimes the waiting is the hardest part.

alizesmom · #5 04-22-2009, 09:45 PM

Welcome, Ciara had her sleep study in March and we found out that she does have central apnea several times a night. She is already on a vent with bipap settings so no new orders for us. As to cause, several possibilities were mentioned without any further discussion. Karen

Barb · #6 04-22-2009, 11:06 PM

Hi, Mel! My now 5 year old son, Bobby, also has BWS. He had a tongue reduction surgery when he was 8-9 mos old and was decannulated soon after. Are you in touch with some of the BWS craniofacial docs regarding tongue reduction or are you choosing not to to do the reduction? Do they think there is actually central apnea or just obstructive apnea because of the large tongue?
I have many questions for you and would love to discuss our specific journey with BWS and decannulation.
pm me if you would like to discuss further.
-Barb

My little figther · #7 04-23-2009, 07:11 AM

I am glad you found us and that this site already helped you somehow.
Michelle

JWorthington · #8 04-23-2009, 07:39 AM

Just wanted to say hi and welcome. glad you found us.

There is a wealth of experience and support on here. good luck with the sleep study - hope you get some answers

Julie

MRSJOH · #9 04-23-2009, 09:03 AM

hello and welcome, I look forward to hearing more from you

I don't have any answers about sleep studys, we had a sleep study to see if there were any neurological reasons our son wasn't breathing but it didn't show any, just his upper airway obstruction

Melisande · #10 04-23-2009, 09:15 AM

My son does not have apneas due to airway obstruction. There a lots of reasons why a child would have apnea neurologically. There are lots of "syndromes" out there that account for them. You are right to look for an answer. For my son, our only "treatment" has been to wait and see, but he was on a vent for over 5 years in the process while he slept. PM me if you have questions. Welcome to the boards!!