I just wanted to share with everyone our experience in Cinc. and a sleep study. While there the pulmonologist decided he wanted to get a sleep study done on Daniel. My first thought was NO WAY!!! I fretted the whole time leading up to it and even asked if they could sedate him. They said no - it would mess up the results. In the few days leading up to the study, all that kept going through my mind was all these electrodes and tape and glue stuck to Daniel and him just loosing it!

The day before I started to talk to him about what they were going to do. Given Daniel's tremendous senosory issues I wanted to prepare him. In trying to though I ended up getting him anxious about it and he didn't want to do it. He really started fretting about it. I really didn't want to just spring it on him with no preparation (like I have done with shots) but was soon questioning myself and my choice in trying to prepare him. Well, he became so resistant that I had to resort to bribary. 1 Webkinz and 1 playstation game. Just the webkinz wouldn't cut it for him. It seemed like it was going to work. He got into the car willingly to go to the hospital. He kept telling himself all the way there that he was tough and that he could do it. I kept thinking he wasn't going to give a darn about the Webkinz and the game once thet started sticking and glueing things to him.

We got there and he liked the room - big relief! He started to relax and think this was not going to be so bad. About an hour later they came in with all the wires and electrodes. Daniel checked them out thouroughly. There was 2 tech's and they got to work on him pretty quick. With each electrode and piece of tape they stuck on him I thought, OK, this is when he is going to lose it! To my total amazement though he didn't!! He even helped them as they pulled the wires up through his pant legs and every which way. I couldn't believe it!! Once everything was done he had to lay down and try and sleep. That was a bit tougher. He didn't want to move a muscle to disturb anything and when he did he got very upset. About 11pm, with a few good dog movies playing (his favorite), he finally fell asleep. In the morning they took off all the stuff and it was done! Amazing for a kid that I can hardly dress everyday! I can't afford to resort to bribary every day though!

I just wanted to share this for those of you that might need to get a sleep study done on your son's and are fretting over it like I did. Bribary works! .

Views: 21

Replies to This Discussion

Sleep studies are the weirdest thing with Mitch - he can cope with all the electrodes - doesn't sleep much, but doesn't compain all that much either - until you have to get the gunk out of his hair........

Now I have found that shaving his head (with the shortest blade) before we go in saves a lot of trouble in the long run - a quick shampoo and comb and the sticky stuff is gone - when he hair is longer it takes two or three washes, and it's just not worth the agro.....

It would be interesting to see all the boys sleep study reports collated together, as according to some of the papers I have just had read, there is definate sleep disturbance in the REM cycle with boys with Duchenne, which is attributed to a deficiency of one of the other isoforms of dystrophin, and the subsequent changes in neural tissue...............
Karen,
I am so happy that is worked out OK. A month ago, my 16 yr. old, Ryan, had one done without enough REM sleep so we had to repeat it ARGHHHH! The second time they did give him a Lunesta (sleep aid) which help alot. I agree that they are very frustrating tests from Ryan and me. I dread them.

Julie,
Where did you find the article that you mentioned about the REM studies. If you could post a link I would be interested.

Blessings to all~ Sue

Julie Gilmore said:
Sleep studies are the weirdest thing with Mitch - he can cope with all the electrodes - doesn't sleep much, but doesn't compain all that much either - until you have to get the gunk out of his hair........

Now I have found that shaving his head (with the shortest blade) before we go in saves a lot of trouble in the long run - a quick shampoo and comb and the sticky stuff is gone - when he hair is longer it takes two or three washes, and it's just not worth the agro.....

It would be interesting to see all the boys sleep study reports collated together, as according to some of the papers I have just had read, there is definate sleep disturbance in the REM cycle with boys with Duchenne, which is attributed to a deficiency of one of the other isoforms of dystrophin, and the subsequent changes in neural tissue...............

RSS

Need help using this community site? Visit Ning's Help Page.

Members

Events

© 2020   Created by PPMD.   Powered by

Badges  |  Report an Issue  |  Privacy Policy  |  Terms of Service