Diaphragmatic Pacing

[EDodson]

I am looking for someone whose child has had Diaphragmatic pacing. Rylan has bilateral paralysis of the diaphragm with unknown cause. Based on his history he is a candidate but there are still a lot of tests that need to be run and at only 1 year old I have A LOT of reservations. I have done tons of research and don’t really feel like this is something we need to rush into. My husband is now having second thoughts so I feel like I owe it to him to fly to Chicago and hear what the specialist has to say. I would like to talk to a mom or dad who has been through it and if it was successful for their child. If so, how many hours a day did it get your child off the vent? Did you go in through the neck or chest? Is it on the nerve or the muscles? What hospital did you choose? I want to know everything! Any help/advice/opinions would be greatly appreciated. Thank you!

[Big Al]

I was under the impression that diaphragmatic pacing couldn't be done on very young children because of the risk of damage to the phrenic nerve. I have worked with the pacers and the client who had it was off the vent for all waking hours after about a year. He complained that it made talking a little more furstrating as the pacer wouldn't give breaths on de,and like the vent did. Good luck, please let me know how your consult goes.

[EDodson]

You are correct in they do not typically pace at such a young age and to be honest, I'm not sure why Rylan would be any different. These are all things I will speak with the specialist about. Even if this is something we wait to consider for several years it would still be great to talk to someone who has been through the entire process.