Helping my 4 year old

[Sludge]

I think he needs more pressure.

A breath-by-breath analysis of the downloads may shed some light on whether or not that would be the proper approach.

That said3, I think that if more pressure is needed, I'd have a REAL low threshold of going to BiPAP.

[Janknitz]

Maybe he needs to be seen sooner?

I'd be reluctant to monkey with the pressure without physician guidance since those are centrals.

[SleepingUgly]

I wonder if 5cm feels stifling/suffocating to him at times, and that's why he's ripping the mask off... Course you'll need to discuss that with the doctor.

I am not sure that you can't use an incentive program for him to keep it on all night. Yes, it may be that he's out of it or having some kind of night terror and can't be reasoned with, but you won't really know if you don't try. Honestly, besides physically putting it back on him (which you try) and a behavioral approach, what else is there while you work with the doctor to tweak pressures?

[SleepingUgly]

when considering Palate expanders, be sure to ask about the Damon System for doing that http://www.bernsteinbraces.com/orthodon ... f-ligating (I am not affiliated in any way with this system, just very pleased about my daughter's results). Many orthodontists use the system with the expander in the center of the palate that must be adjusted with the use of a tool every day. It puts hardware on the roof of the mouth, so the tongue cannot rest flush against the roof of the mouth. This MAY cause issues with getting a good CPAP seal, and my child's orthodontist, who trained in South Africa where there is a lot of emphasis on skeletal growth and development in the orthodontia curriculum, feels that it's vitally important NOT to impede the tongue position since the tongue on the roof of the mouth helps to shape the palate in a more natural way.

The Damon system is applied to the outside surface of the teeth and expands the palate through activated wires that only have to be changed every 2 months or so.

Does it really lead to the same kind of expansion of the palate in the same way that Rapid Maxillary Expansion does, with the splitting of the midpalatal suture? I didn't think that self-ligating braces were a substitute for RME. I'm personally interested in this again, as I thought RME was off the table for my son, and now it appears it might be a consideration.

As for the tongue placement, RME is extremely temporary, so that shouldn't be much of an issue long-term.

[echo]

I'm obviously not an expert on CAs or children with sleep apnea. I'll also go by my own experience here.

I did notice that on my graphs, I would get sleep onset and wake-up CAs, especially in the beginning when I first got on CPAP. Of course that's not to say that these CAs aren't really centrals, so worth digging into.

Have you checked that he isn't mouth breathing? In the beginning, I also periodically ripped off my mask in my sleep before I discovered I was mouth breathing and at too low a pressure.

I had the palate widening device when I was younger. Didn't do a thing for my apnea.

[Janknitz]

Does it really lead to the same kind of expansion of the palate in the same way that Rapid Maxillary Expansion does, with the splitting of the midpalatal suture? I didn't think that self-ligating braces were a substitute for RME.

According to the orthodontist, he sees much better results with self-ligating braces because the tongue is able to maintain a normal position and helps the process along. It is far less traumatic for the child--very well tolerated.

My daughter had some speech articulation issues, and the last thing we wanted to do was put something in the roof of her mouth which would interfere with the tongue movements, swallowing, or trigger her sensory issues.

The results were dramatic. She's on to phase two of her orthodontia with a Herbst appliance to advance her mandible that seems to be working incredibly well (if I could get her to be a little better at flossing and brushing!).

[sleeplessmommy]

The orthodontist we are using is an advocate of RME and his practice is geared toward helping sleep disordered breathing. He is considered the person to go to in our area. I will ask him about the Damon approach as I am not familiar.
I had that thought about the pressure too especially seeing some of your graphs with much less events on them than what my son has going on.

His follow up is in less than two weeks, so I won't adjust anything without working with her.

Agree with late bedtime and parasomnia comments. He has become very hyper in the last year and has a hard time settling. He has always fought sleep since infancy. Consequently, he needs and adheres to a strict bedtime routine but he just does not fall asleep until 9pm no matter what time I get him in bed. Unfortunately, sleeping late isn't an option because I have to be at work very early. I try to have him nap for 2 hours which helps his parasomnias.

I so appreciate the help. The pediatric forums I have found are not very active.

In reference to the incentive chart, I feel like I'd be setting him up for failure because I do feel the wake ups are not in under his control. He gets a reward when he keeps it on all night (maybe 3 times in 2 months).

[Julie]

I know it's impossible to tell someone else how to live, and I'm NOT judging. But I personally, if I had any options at all to work with (or maybe even if I didn't) I would do absolutely anything necessary (like changing jobs or shifts) to facilitate what my child needed, and making a child with sleep disorder(s) go to bed at a time out of synch with his own rhythms is something I'd target to fix before almost anything else.

[SleepingUgly]

He has become very hyper in the last year and has a hard time settling. He has always fought sleep since infancy. Consequently, he needs and adheres to a strict bedtime routine but he just does not fall asleep until 9pm no matter what time I get him in bed.

I think you mentioned that he may have ADHD. Sleep issues, including difficulty settling to sleep, are common in kids with ADHD. Perhaps you can talk to his doctor about giving him melatonin at night?

In reference to the incentive chart, I feel like I'd be setting him up for failure because I do feel the wake ups are not in under his control. He gets a reward when he keeps it on all night (maybe 3 times in 2 months).

Well, that reward is an incentive. Is it something very motivating that he gets immediately?

I know it's impossible to tell someone else how to live, and I'm NOT judging. But I personally, if I had any options at all to work with (or maybe even if I didn't) I would do absolutely anything necessary (like changing jobs or shifts) to facilitate what my child needed, and making a child with sleep disorder(s) go to bed at a time out of synch with his own rhythms is something I'd target to fix before almost anything else.

Are you saying that the kid should dictate what time he goes to bed? And what happens in a year or two, if not sooner, when he goes to a school that starts early in the morning? You don't let a kid with a sleep disorder dictate how and when he sleeps (which would clearly be late, disrupted, and without CPAP, if he had his way), and the kid doesn't dictate when and where his mother works. This is a mother who was/is sleeping in the kid's room in order to replace his mask every time he took it off! I don't even know how she's able to function at work with the disturbed sleep she's getting. She has nothing to feel guilty about.

[Sludge]

I know it's impossible to tell someone else how to live, and I'm NOT judging. But I personally, if I had any options at all to work with (or maybe even if I didn't) I would do absolutely anything necessary (like changing jobs or shifts) to facilitate what my child needed, and making a child with sleep disorder(s) go to bed at a time out of synch with his own rhythms is something I'd target to fix before almost anything else.

Are you saying that the kid should dictate what time he goes to bed? And what happens in a year or two, if not sooner, when he goes to a school that starts early in the morning? You don't let a kid with a sleep disorder dictate how and when he sleeps (which would clearly be late, disrupted, and without CPAP, if he had his way), and the kid doesn't dictate when and where his mother works. This is a mother who was/is sleeping in the kid's room in order to replace his mask every time he took it off! I don't even know how she's able to function at work with the disturbed sleep she's getting. She has nothing to feel guilty about.

Please refer to forum rules. All babe-fighting must be done in the Jello pit while wearing bikinis.

[Sludge]

The pediatric forums I have found are not very active.

Well, we can certainly go completely bat-crap crazy if you want to.

If the only software you have is Sleepyhead, can you post a screenshot of Overview, only Session Time and Usage selected, date range last 2 months?

In re: wake-up time, so he is woken up vs waking naturally?

Any chance of getting the complete detailed sleep reports (could even look at raw data if necessary)?

[Sludge]

Any chance of getting the complete detailed sleep reports (could even look at raw data if necessary)?

If the sleep disruption is that bad, one might question the validity of the scored events. However, since there is the noted improvement in enuresis, it would appear that there is at least some blame that should be assigned to the SDB.

[sleeplessmommy]

Sludge wrote:Any chance of getting the complete detailed sleep reports (could even look at raw data if necessary)?

Here is a report that was after his T&A:


And here is CPAP titration study report:




I can try to post the Sleepyhead overview tonight.

[sleeplessmommy]

I know it's impossible to tell someone else how to live, and I'm NOT judging. But I personally, if I had any options at all to work with (or maybe even if I didn't) I would do absolutely anything necessary (like changing jobs or shifts) to facilitate what my child needed, and making a child with sleep disorder(s) go to bed at a time out of synch with his own rhythms is something I'd target to fix before almost anything else.

Not an option, especially in this economy. Definitely not my choice to leave my little ones and go to work, but it pays for my home and healthcare.

[sleeplessmommy]

I think you mentioned that he may have ADHD. Sleep issues, including difficulty settling to sleep, are common in kids with ADHD. Perhaps you can talk to his doctor about giving him melatonin at night?).

We tried a controlled release melatonin under his neurologist's recommendation, but he STILL wakes up!!!

Well, that reward is an incentive. Is it something very motivating that he gets immediately?

He gets tokens he can use at Chuck E. Cheese, small toys, etc. I just meant stickers aren't usually motivating for him.