Re: Sleep study issues

[Guest guest]

My daughter is involved in a sleep study at Children's Hospital in Philadelphia, with specialists who work primarily with DS.

These are steps that we were encouraged to try:

Have her just put on the mask, not hooked up to anything, to get her used to the mask. She is rewarded for keeping it on for 5 minutes, After awhile we increased the time, while awake, wearing the mask. We added TV, music, and other activities that she enjoys, with the mask on. We then put it on in bed, but she could sit up and read with it on. We kept the lights on, so she didn't have to go to sleep right away. After about 2 weeks of this, we had the actual sleep study. We took pictures for her to laugh at, and share with friends, while we had the wires put on her head. She actually completed the study the first time, after several times getting up, taking the mask off, etc. We continued to use the machine at home, and kept adding things to have her do at home with the mask on. Eventually, we got her to keep it on, and she actually fell asleep with it on. She woke up a couple of hours later, and took it off, but we convinced her to put it back on. After a few weeks, she kept it on all night!  We had a second sleep study done after that, and she slept most of the night. We added the oxygen, and it didn't bother her at all. 

We don't punish her for taking it off, but we do add rewards when she keeps it on, successfully, all night. At bed time we tell her what she is working for. The next morning she finds out if she earned the reward. If not, we tell her why. We tell her that we will try again tonight, and tell her what she needs to do to earn the reward.

I do stay with her at night, so she doesn't get scared. Sometimes, she feels like she can't breathe, and that can be scary for anyone. When that happens now, she takes off the mask, turns off the machine, sits up, and calls me to help her. By my being there everytime she felt like she couldn't breathe, I believe helped a lot. Also, giving her some control helped a lot. That's why we taught her to turn off the machine, and remove the mask herself. We do put it back on together, after she feels better. She usually does fall back to sleep with it on.

 

 

My 18-year-old daughter has a pretty severe sleep disorder. She is extremely restless and sleeps 12+ hours every day. She had a sleep study done when we lived in Wisconsin about 2 or 3 years ago and she had no problems getting to sleep and sleeping the night for it. Now that we are in Colorado, her doctor has recommended another sleep study. We have tried twice now to get it done and my daughter will not sleep. The first one was attempted about 4 months ago and they tried to do an EEG with the sleep study. All the wires on her face bothered her greatly and she did not sleep for even 1 minute. We attempted a 2nd one last night, just trying the sleep study alone without the EEG and the added wires. She still did not sleep. Has anyone else out there had great difficulty getting a sleep study done? Any suggestions? Her technician did say her oxygen levels were in the 80's and she was concerned about it. But the bottom line is that I know she has a sleep disorder that needs to be treated, but need some guidance on how to get it done. thanks for any advice you can give.

[Guest guest]

Does your daughter sleep well at home when she sleeps?  In the area where I live , there are companies now starting to do IN HOME sleep studies.  MAybe this will be solution for you??

 

My 18-year-old daughter has a pretty severe sleep disorder. She is extremely restless and sleeps 12+ hours every day. She had a sleep study done when we lived in Wisconsin about 2 or 3 years ago and she had no problems getting to sleep and sleeping the night for it. Now that we are in Colorado, her doctor has recommended another sleep study. We have tried twice now to get it done and my daughter will not sleep. The first one was attempted about 4 months ago and they tried to do an EEG with the sleep study. All the wires on her face bothered her greatly and she did not sleep for even 1 minute. We attempted a 2nd one last night, just trying the sleep study alone without the EEG and the added wires. She still did not sleep. Has anyone else out there had great difficulty getting a sleep study done? Any suggestions? Her technician did say her oxygen levels were in the 80's and she was concerned about it. But the bottom line is that I know she has a sleep disorder that needs to be treated, but need some guidance on how to get it done. thanks for any advice you can give.

-- Sara- different pathways lead to Nirvana.

[Guest guest]

Hi

For all of Adens sleep studies we had to use a sedative to get him to sleep and then they hooked him up to everything. He absolutely would not go to sleep any other way and each time the technician did not want the trauma of attaching everything with him awake.

<<Her technician did say her oxygen levels were in the 80's >>

Has your Dr checked her resting and active O2 levels since the move. Higher altitudes can be a big problem for kids with DS because the lask of air density reduces the amount of O2 available with each breath. This could also cause her to sleep more if she is lacking O2. We live at about 5500 feet and Aden's levels are always a concern, but when we go down to sea level he's fine.

Hope this helps,

To: Sent: Monday, March 26, 2012 12:13 PMSubject: Sleep study issues

My 18-year-old daughter has a pretty severe sleep disorder. She is extremely restless and sleeps 12+ hours every day. She had a sleep study done when we lived in Wisconsin about 2 or 3 years ago and she had no problems getting to sleep and sleeping the night for it. Now that we are in Colorado, her doctor has recommended another sleep study. We have tried twice now to get it done and my daughter will not sleep. The first one was attempted about 4 months ago and they tried to do an EEG with the sleep study. All the wires on her face bothered her greatly and she did not sleep for even 1 minute. We attempted a 2nd one last night, just trying the sleep study alone without the EEG and the added wires. She still did not sleep. Has anyone else out there had great difficulty getting a sleep study done? Any suggestions? Her technician did say her oxygen levels were in the 80's and she was concerned about it. But the bottom line is that I know she has a sleep

disorder that needs to be treated, but need some guidance on how to get it done. thanks for any advice you can give.