Hi Im new here. I have a 4 yr. old son who's been recently diagnosed with an unspecified congenital myopathy. Born premature. with Hypotonia (low muscle tone), Grooss/fine motor delays, Reflux and Sensory Integration Disorder. He's also 99.9% G-tube Fed.

In the pass year we've noticed his poor breathing at night, gasping, shallow breathing and restlessness has always been a problem. He's hooked up to a feeding pump all night so I thought that was the reason why he was so restless, guess not.

Anyways, he had his Sleep Study and we just received the results. I didnt get a chance to see his regular PED so I wasnt able to discuss the results with anyone today, the office just printed it out for me. He doesnt see his Nuero until November to discuss the results and I really would rather NOT wait that long!

I know many of you have seen a few of these reports, is there anything you can tell me by looking at this info?

Sleep Scoring:
slept 482 mins.
268.4 in supine position
213.6 in nonsupine
His calculated efficiency was slightly decreased at 86.4 with sleep onset of 36 mins.
Sleep was interrupted by 128 arousals giving the patient an an arousal index of 16, which is somewhat elevated.
1 periodic leg movement arousal
118 spontaneous arousals
9 respiratory arousals.
4 REM periods and spent 5.4% of the total sleep time in stage 1
40% in stage 2
28.2% in delta sleep
26.4% in REM sleep

The patient had a repiratory rate to an average of 22 awake and asleep.
37 respiratory events, 22 in supine, 16 in nonsupine.
Respiratory disturbance index was 4.6
8 obstructive apneas
4 central
25 hypopneas
22 episodes were in REM sleep. The duration of the respiratory events was 6 to 35 seconds in non-REM sleep, average 20 seconds,
and 6 to 43 seconds with REM sleep, an average of 17 seconds.

The oxygen sats at baseline was 94%, and a min. was 82% in REM sleep, 91% in non-REM sleep.

NO evidence of periodic leg movement disorder
Normal EEG
Normal EKG

This patients respiratory disturbance index is 4.6--normally in children it should be below 2.
Needs to be referred to an ENT to see if he is a canidate for T & A. The alternative,
if the patient is not a surgical candidate, is CPAP titration and treatment.

SO thats it, any idea if this report is considered mild? Moderate?
Having his sats drop so low scares me---Im just not sure what on this report is most concerning?

Also Im wondering what would make him NOT a good candidate for T & A surgery?

Please DONT tell me he's going to be a "hose head" I cant see him tolerating another machine
to be hooked up to at night! The poor kid!

Thanks for any info you have to offer, its much appreciated...

Hugs to all your kiddos-

Heidi and my sweet boy, Jack.

hi hiedi,

Just wanted to say welcome to the forum.

My goodness, it sounds like you have been through so much. There are a lot of parents here that have children with various conditions along with the OSA, so there's a lot of great support here.

I only have a little bit of knowledge about what all the numbers mean in a sleep study report. The AHI or RDI is the important number, it tells you the average of apneas & hypopneas per hour. If I'm reading your post correctly (again, I'm not very knowledgeable about this, I could be wrong) it says his RDI is 4.6. From what I have read about OSA, over 5 is mild and anything over 20 is considered severe in adults (note that it says normal for child is 2.) If you would like to compare your son's results to another child's (to better understand the numbers) you can check out my son's results in the pediatric forum under the title "another question for my parent friends" http://www.apneasupport.org/viewtopic.php?t=12268 Caden had severe apnea with oxsat drops into the 70s. The doctors will be able to shed the most light on your son's study, but I understand how frustrating the wait can be.

 I'm guessing the question as to wether he is a good candidate for a T&A might have something to do with his pre-existing conditions. Has he been seen by an ENT to evaluate wether his tonsils and adenoids are enlarged? If they are not enlarged then that might be another reason why the would feel a T&A would not be ideal treatment.

I know how frightened you must be, and I also understand how frustrating the waiting can be. I wish I could be of more help. Hang in there, please keep us posted with updates.

Kim

KIM,

Thanks for replying to my post.

Hmmm...if his RDI is 4.6 then it sounds like his apnea isnt that concerning?

Jack see's an ENT for the first time on OCT. 16th to check his tonsils. Im not sure if theyre big, he wont let me see in there! He's extremely oral defensive, thus the G-tube. He doesnt put much in his mouth, so its a struggle just to brush teeth, ect... Ill be sure to bring his sleep study and see what the ENT says about the results. He has a NUERO appt on the 9th to go over his results but I dont want to wait that long!

I read your sons sleep study, yeah his numbers appear more concerning. I noticed you only got one reply, Im not sure if I posted in the right area. Maybe I should of posted in the sleep studies forum?

How old is your son? Did you get that 2nd sleep study done? Did the T&A solve all his sleep problems. What little I know, T&A surgery wont solve Central Apnea events. SO I guess if your son still is having the Central apnea, then will he also need the CPAP? Jack only had 4 of the Central, this probaly isnt enough to worry about.

OH well Ill have the ENT look at it next week anyways. I was worried about the low sats, but I guess 82% isnt as low as some get here. I just hate listening to him sleep at night, he gasps a lot during the night and it scares me. However he doesnt snore, which I thought was common with Obstr. apnea? I still have to sleep with Jack because he's hooked up to a feeding pump all night and he gets tangled in the tubing because of all his tossing and turning. He still takes long naps during the day and he's hard to wake in the morning. I hope he's a candidate for the T&A because I would rather do the surgery and solve it that way then deal with the CPAP.


Anyways, thanks for welcoming me. I appreciate your time, I pray your son is doing well today.

Hugs to Caden-

Heidi and Jack.

Quote:

I read your sons sleep study, yeah his numbers appear more concerning. I noticed you only got one reply, Im not sure if I posted in the right area. Maybe I should of posted in the sleep studies forum?

Most of the people on this forum are adult sufferers of sleep apnea, us parents with children with SA make up a small portion of the members. Apparently, sleep apnea is very different in children than it is in adults, different complications, even different treatment, I think a lot of the members don't reply to posts about children w/ SA simply because their own experiences with it are so different.


If you have a good camcorder, try to catch your son's apnea (the gasping at night) on film. Take it with you to the ENT and the nuero. I fought for a good year to convince the docs my son had apnea, it wasn't until we showed the ENT footage of my son sleeping that we finally got results.

Caden is 5 years old. The T&A seems to have really done the trick. He sleeps so peacefully now, it's amazing. I haven't persued getting the 2nd sleep study yet....just trying to give him a break from all the doctor stuff for awhile.  I'm still not sure what to think about the central apneas on his report....eventually I will talk to his ENT about a 2nd study.

As far as your son's low sats, any desatuation isn't good, especially with young children, so make sure the ENT addresses it with you. And if you're acually witnessing him gasping at night, I would certainly say there's something going on, sleep study results or not.

I certainly understand your concern about CPAP. My son was evaluated for Sensory Integration, too. He didn't show "enough" signs of it at the time of testing, so they never really diagnosed him with it. But, he hated being held or cuddled as a baby, was extremely particular about how and what foods he would eat, shyed away from being touched, would only wear certain kinds of clothing, would freak out if he got anything on his hands, and the list goes on.....we put him in a specialized theraputic pre-k program and it really helped a lot. He has grown out of most of his little quirks since then and is now in regular kindergarten and doing great!

Good luck to you on the 16th, thanks for your prayers and we will keep you and jack in our thoughts, too.

Let us know how it goes on the 16th.

Kim

Most of the people on this forum are adult sufferers of sleep apnea, us parents with children with SA make up a small portion of the members. Apparently, sleep apnea is very different in children than it is in adults, different complications, even different treatment, I think a lot of the members don't reply to posts about children w/ SA simply because their own experiences with it are so different.

This is very true......... I originally came to this forum for my own sleep apnea. Just recently I discovered my 3 year old son has it. He just had his tonsils and adenoids removed last Wed. Even though he is still sick and in a lot of pain. I can already see a HUGE improvement in his quality of sleep!!!! I have actually gone in his room to check and see if he is still breathing because I can't hear him anymore.lol I know once we get through the recovery period it will be WELL worth it.

I think it is a good idea to see an E.N.T. from what I understand (most) children's OSA is due to large tonsils and adenoids. Keep us posted and I wish you the best of luck!!!!!!!!!! From the results you posted it sounds like the sleep docs believe it is a big enough problem to warrant treatment. I would trust that and do what you need to do to get your little one some help. I know how awful it is to watch your child struggle to breathe at night and unable to do anything about it!!!!!

Thanks Roxie and Kim,

Jack went in on the 16th and the ENT told me his tonsils did look BIG and recommended the T&A surgery. Now I have to decide when to do it. I really dont want him to be uncomfortable through the Holidays so I may have to wait until Jan. He also needs an ENDOSCOPY/STOMACH BIOPSY done soon to check his reflux situation, because he's having more trouble there. Thats next week, I was hoping they he could have the T&A done at the same time but they said it would be too hard to schedule both DOCS to do it. UGGG, poor thing will need to be put out twice now.

I wasnt that impressed with this ENT, he wasnt the warm and fuzzy type and he said he NO WAY recommends a CPAP machine for kids younger than 10. In fact he never prescribes this treatment for little ones because he said that they dont keep the thing on and its a waste of time. HE actually said he just gives them a TRACH! YIKES I was a little set back by this! Maybe he meant for the kids with real problems at night, I hate to think he is performing Trach surgery on any kid under 10 that has sleep apnea! BUT in Jacks case he feels the T&A surgery will help but also mentioned that there was no guarantee it would do anything to help with his behavior issues (sensory meltdowns) Mostly Im just looking for him to be more rested since he has a Myopathy and fatigue is such an issue for him anyways. PLUS it would be nice to wake him each morning and actually have him wake up! Im really tired of dressing a corpse! He actually sleeps through it! He is just soooo tired every morning.

Roxie, sorry to hear your little guy is still in so much pain. The ENT told me Jack would be slower to recover because he wasnt an oral eater and that swallowing food actually helps heal the tissue afterwards. BUT the good thing is, because of his G-Tube I can keep him hydrated and he may not lose too much weight.

Im happy to hear your son is sleeping much better, it will be all worth it soon! My 7yr old son had the T&A surgry when he was 2yrs old and I remember the recovery and bad breath! Actually he recovered very quickly and didnt even complain much at all but his voice changed dramatically afterwards! He sounded like Minnie Mouse for weeks! Not sure why, but slowly his ol' voice came back.

Many hugs for your little one, hope he's feeling better soon.

Kim, hugs to Cayden too!

Thanks again for your support, Ill keep you posted....to be continued, this kid always has something going on!

Hugs Jack and I.