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The Rea Family
March 21st, 2004, 02:50 PM
Can anyone tell me the signs of sleep apnea?
Christopher snores a little, he doesn't seem to get a very restful sleep, and he's always ready to take a nap by 11 a.m. .
Does this sound like sleep apnea?
How do they test for this?
My mother has sleep apnea, plus I know it's an MPS thing, so I was just wondering.
Thanks in advance.

March 21st, 2004, 06:33 PM
Dear Carrie, I am not a doctor so I can only share with you our experience with sleep apnea. The signs you mentioned were things my son was also doing. MPS children are prone to sleep apnea. My son does have sleep apnea. When he was your sons age he did the same snoring and had restless nights with jumping up and out of the bed. He would snore loudly and wake many times at night. At the age of two and a half, we did not know he had MPS but we had his tonsils out and adnoids. That helped tremendously. At 4 yrs we had the adnoids removed again as they grew back. He slept much better for awhile and began then waking with pains in hands and we addressed carpal tunnel surgery at the age of 5. Your best bet would be to talk to your doctor about a possible sleep study test where he can be monitored throughout the night, or perhaps first address the adnoids and tonsils if you have not had them out yet. Good luck. Keep us posted.

Rosemarie

DarlaMay
March 21st, 2004, 08:10 PM
Carrie,

I can only tell you want our experience has been so far. I am still trying to work this subject :? My oldest, Chris (mps6), was referred for a sleep study after I had talked with our geneticist about his snoring (when it came back after his neck decompression surgery). The neck issue was a separate issue that contributed but was not directly responsible for the apnea that I have been told.

Anyway, before the surgery Chris's snoring could be heard from my room across the hall. He was sleeping on three pillows and it sounded like a freight train :whatthe?: After his surgery, which stabalized and aligned the area, his snoring was almost non-existent, very low. Then it gradually started to get worse again. I talked to the geneticist at our next visit when I could hear him out in the hall. He also had a habit of dropping off to sleep during the day. He could be sitting, looking at a magazine; then be sound asleep sitting up the next minute.

The sleep study consisted of him being hooked up to an eeg and other monitors and videotaped for a night. The monitors were in another room, the room Chris & I were in looked like a hotel room except for the wires attached to him. The video was taken through a camera lense in the ceiling over the bed. Chris had several sleep interruptions, but no recognized obstructive apnea (where something is blocking the breathing path, like tonsils or adnoids). Chris still has both tonsils and adnoids. Chris did have, however, numerous central apneas. From my research, that is where the muscles do not make the movements or are delayed in making the movements needed to take the breath.

I am trying to contact the doctor who read the report to find out what our next step should be and the effects of these interruptions. I have read about some negative effects, but in Chris's situation where it is muscle movement, I don't know what precautions or treatment we can do.

Sharon Cochenour
March 21st, 2004, 08:32 PM
Carrie
My story of Andrew's sleep apnea is almost the same as Rosemarie's story about Chase. We first had a pulse oximetery monitor done at home which he had an probe attached to his big toe during the night. He had 49 episodes of apnea that night. At the time he was extremely restless at night, would wake up frequently, and snored really loud. He wore oxygen at night after that and a pulse ox., but I would have to wait untill he went to sleep because he would pull it off.
He had his adnoids out and it helped alot, but they grew back. Then we had his tonsils and adnoid out at 3 1/2. He had a hard recovery for about 5 days, but then got better.
Since the MPS diagnosis we have a sleep study yearly done at our local hospital, and then had one done with the Hunters Natural History study. They have been OKay, except the one at UNC they wouldn't let me stay in the room and the reading was really bad I think for that reason. Remember that one Kris? :(
Sharon

March 22nd, 2004, 11:54 AM
Carrie,
Seth has life threatning sleep apena. All of the signs you mentioned are things that I noticed with him, however, he also had horriable night terrors and always woke up "freaking out" and gasping for air. Ask you doctor about doing a sleep study to see if, and if so, how bad the apnea is. Seth now wears a BiPAP at night that helps his sats not drop as low as they used to and it sort of, forces him to breathe in and out during those apnea episodes. since we have gotten him to wear the BiPAP his snoring has gotten alot better. Sometimes he still dips into low sats during the night but usually doesnt stay down to long anymore. Good luck, apnea is not fun for anyone.
Misty :)

Laura Brodie
March 22nd, 2004, 02:05 PM
Hi Carrie,
Will has had Sleep Apnea all along especially as a young baby when he would stop breathing for a few sconds then start again-Mostly this was due to extra bone growth in his nose caused by Hunters -although at the time we did not know that-
He now snores very loudly which helps me know when he's not breathing as he stops!!! :whatthe?: gasps for air. It has got a little better s he has got older Sometimes it even happens when I'm changing his nappy after a bath!! and he is awake-I've got so used to it I just sit him up and jiggle him about?? His bed is elevated at the head end and for a long time he had a SATS and breathing monitor but in the end we weaned ourselves off them!!! :roll:
I keep the air moist and check on him regularly. Recently his breathing has got a lot worse as he has been diagnosed with another condition which causes the face to swell. Over here they are not really very proactve in finding out whats wrong unless the parents push for it! We are due to visit the Docs again in the next few weeks to have his breathing evaluated -I am still praying its upper airway stuff and not MPS in his lungs :cry: Love Laura

3coolkidsmom
March 22nd, 2004, 09:33 PM
Carrie,

The MPS Society has published a fact sheet on CPAPs and BIPAPs that has useful info regarding MPS and sleep apnea. You can download it by going to their web site -www.mpssociety.org and clicking on Library. Spmetimes it is good to print these fact sheets and take them with you to the docs office. Looks kinda official!

Hope this helps,

Tami
March 23rd, 2004, 08:25 PM
I agree with Amy!!

Print the sleep apena info from the society and take it to your doctor! Both my kids are on oxygen. Jacob should be on Bi-pap but he is 16 and how do you make a 16 year old keep a bi-pap on all night??? PLEASE!!!

We are doing a sleep study next month and if it comes back abnormal again, then I have told him he WILL wear the bi-pap!!!

The last sleep study we did there was a "baby" doctor observing the study. He got all "up-ity" and stated "why don't you just take his tonsils out!!!!" with a look like " you stupid parents don't know anything!" I calmly explained that Jacob has already had an "MPS anesthesia problem" and another surgery would/could kill him!!!! He had no idea what I was talking about!!!

Most doctor just think they know everything and don't understand what the special problems our MPS babies have. Giving them the info helps them understand our babies without have us "parents" tell them their job! It makes a better impression on them and they will respect you! Well that's the hope! :lol:

Hugs,
Tami