Saturday, February 9, 2013

Sleepless Nights


As you remember, we were so excited to get Dean on the bipap when the opportunity arose for him to get a better night's sleep and to protect his health. And for a 3-year-old, Dean's adjustment curve to the bipap was great. Then he got a sinus infection and had to go off it for awhile, and then when that was cleared up, he was back on and it was great again. 

Not sure what changed, but for over a month, Dean has been pulling it off all night long. I haven't posted about it much because I don't want to seem like a whiner, but really, we are very tired. I at this point am considerably discouraged. Part of the problem is that Dean keeps getting congested and then he can't use it, so the rhythm keeps getting disturbed, but part of it is just that he's really good at pulling it off and so he does. :/ Some nights it's enough to make me want to give up on the bipap altogether, but I don't think that's a good idea either. Dean clearly needs it, even if the lack of severity of his apnea means that it's more for a good night's sleep than for a serious health risk. Either way, we take it seriously. 

One option is to look into a palatal expander, which is something that we might be able to get from a local pediatric dentist who specializes in these with small children. If an expander successfully drops Dean's palate and opens up his airway, we might be able to eliminate his apnea. This is the theory. Then again, this involves putting a PALATAL EXPANDER on a three-year-old, which sure does not sound like a good idea. Pray for us? So tired... the weary kind and the frustrated kind. Can we just wish this aspect of PWS away after all? After all, the tools are only helpful if you actually *use* them....

4 comments:

Giulia said...

Ali,
I know that I am not directly involved with PWS, but isn't it possible that Dean does not use the BiPap because he is unable to use it ?

So, he refuses to use it (does not want to use it) because he is unable to use it (cannot use it) ?
Of course, the ideal would be that he said : "Mom, I don't use my BiPap for X and Y reason, can you help me about it ?"
What I perceive is that Dean does well if he can. So, beginning from there, my two cents are that if Dean was able to use the BiPap, he would had done it.
So, he does not do well because he cannot, not because he wants to make your life a misery.

Other question, can the mask be the problem for Dean because it's painful ?
There are different kind of masks, and maybe the standard pediatric mask is not the right mask for Dean.

From what you've been writing about Dean's Bipap and sleepless nights, the bipap sounds a very good tool, but you need to tweak one or two stuff before Dean can really use it.
The mask is one element to check, but there are other avenues to check before giving up altogether.

What you can ask to his sleep doctor is if the program could be too strong for Dean, so he cannot tolerate his BiPaP. Maybe a gentler program will not produce ideal results, but he will be able to tolerate the BiPap much better. And then, with the time, you increase the program strength as his tolerance increases.
I am not a doctor, but it can also be that the doctor went too fast in his tolerance protocol. Maybe by going slower in the BiPaP tolerance protocol, Dean can tolerate his machine much better.

Also, could the machine be too noisy for Dean ? I slept with someone wearing a BiPaP and the machine can be awfully noisy (I have hyperacousia and believe me, the noise was absolutely unbearable for me, like if you put a firework stuff in my ear).
Does Dean have sensory issues like hyperacousia ? If so, it can partially explain why Dean does not like his BiPaP, and figure out how to make the machine less noisy.
It can be something as simple as putting the BiPaP in a box before switching it on, as the box will isolate the machine (like shutting the door lessens the noise in the other rooms).

For the palatal expander, it can be a great tool if it's the right tool for Dean.
I could also learn that if a palate difformity causes the sleep apnea to Dean, then, the palatal expander is a great tool.

I understand how discouraging sleepless nights are.
But don't give up because you will find a way to help Dean, no matter how long it takes.


Take care, Ali

Ali Foley Shenk said...

Giulia,
Lots of great questions and thank you for your encouragement. I am determined to figure out what is going on and why he was suddenly tolerating the bipap before and not now.

I don't *think* Dean has hyperacousia, and the good thing is that his model of the machine is very quiet! So that is great. I do wonder if other sensory issues are coming into play, though.

I wrote to his sleep doc with questions about this and we have an appointment with him in a few weeks, so hopefully he will have some guidance for us.

Barbara said...

Ali,
I use a mouth guard (a palatal expander?) to help with my apnea. It feels like a retainer in my mouth. It is formed to my teeth and extends my lower jaw forward just enough to open my airway. I absolutely could not use a cpap - it was like torture when I slept. I am not sure if what you are referring to would be workable for Dean - he might just take it out too! But it is worth checking into. Best of luck with all this! Praying for you my friend. :)

Ali Foley Shenk said...

Barbara,
I know what you're talking about... I don't remember if we inquired about that mouthguard as a possibility for children. I do think that something like that *could* be helpful for Dean. The hope with the palatal expander is that it will correct the underlying anatomy/craniofacial issues that might be causing the sleep apnea in the first place... so kind of what yours does except that it will fix the problem permanently. This is assuming, of course, that this is the cause of Dean's apnea and not just low muscle tone.