[Diagnosis] new member intro and question

[2boysmom]

Hello My 13 yr old son was just diagnosed with sleep apnea. A little back story; he was diagnosed with high risk acute lymphoblastic leukemia in 2010 when he was 9. He went through chemo treatments for just over 3 years and completed treatment in 2014. (he just celebrated one year off treatment, yay!) He just went back in for his 2nd sleep study to find out his pressure a few days ago and we are currently waiting on his results. I have a copy of his initial sleep study, and the 318 central apneas and the note of significant amounts of periodic breathing kind of freaked me out. His neurologist said the obstructive apneas could be causing the central apneas, but would anyone be able to explain this better to me? I guess what I am worried about is whether or not a CPAP is going to get rid of the central apneas and what the next step would be if not. Also would you consider 318 central apneas and the significant amounts of periodic breathing a reason for me to worry? Any thoughts you have on his results are appreciated! His sleep study stated the following:

"Respiratory analysis demonstrated 7 obstructive apneas, 0 mixed apneas, and 318 central apneas. A total of 325 apneas and an apnea index of 45.2 events/hour was recorded. There were 101 hypopneas, with a hypopnea index of 14.0 events/hour. The APNEA HYPOPNEA INDEX (AHI) was 59.2 events/hour. The patient had a RESPIRATORY DISTURBANCE INDEX (RDI) of 63.3 events/hour.
Central Apneas associated with Periodic Breathing noted. Removing these Central Apneas from the APNEA/HYPOPNEA INDEX (AHI) decreased the overall APNEA/HYPOPNEA INDEX (AHI) to 17.5 events/hour.

The lowest desaturation was to 72%. Mean oxygen saturation was normal while awake. The mean saturation while asleep was 93%. Mean oxygen saturation was decreased while in NREM Sleep (mean SaO2 of 91%) and normal while in REM Sleep (mean SaO2 of 98%). The patient spent 73.5% of the total sleep time having a SaO2 > 90% and 10% of the total sleep time having a SaO2 between 80-89%.

IMPRESSIONS:
This was an abnormal study.
Severe Obstructive Sleep Apnea was recorded (AHI equal to 17.5 events/hour).
Oxygenation was abnormal, with hypoxia recorded while asleep.
Ventilation was normal.
Moderate, intermittent snoring was noted.
Of note, there was a significant amount of periodic breathing recorded during this study, several of these events last for several minutes.
Clinical Correlation required.

Thank you for reading my novel ;-) I would also appreciate any advice as to what I should be looking for or ask for in a mask / machine. He also has Aspergers, it might be a challenge sensory wise to find a mask he feels comfortable with.

[Whitjr]

Wow... What a report to digest...

The Central Sleep apnenic events are cause for concern. IMHO, these are likely part and parcel with the leukemia. Please go to the Mayo Clinic web pages for a clinical definition of Central apnea. Or, type in a search using Google or your fav search engine for " Central Sleep apnea definition.

It also sounds like you are paying close attn to your son's problems.... And IMHO you are to be commended for it. good luck!

[2boysmom]

Thank you for your reply and info, I will check out the Mayo clinic site. To be honest I am worried of late effects from some of the chemo (doxorubicin and daunorubicin) which can cause heart issues and may potentially be causing the central apnea. However I am not very familiar with sleep apnea and his neurologist seems sort of casual about his results and just wants to put him on CPAP. I wanted to make sure I was not over reacting over his results (which I don't totally understand!) before I went all momma bear on his Dr and asking for more testing :-) Thanks again

Wow... What a report to digest...

The Central Sleep apnenic events are cause for concern. IMHO, these are likely part and parcel with the leukemia. Please go to the Mayo Clinic web pages for a clinical definition of Central apnea. Or, type in a search using Google or your fav search engine for " Central Sleep apnea definition.

It also sounds like you are paying close attn to your son's problems.... And IMHO you are to be commended for it. good luck!

[retired_guy]

Hi Mom. The good news is everything will be fine. Bless you and your son for all you have addressed in his young life. The apnea events suggest the boy is not being allowed to obtain meaningful, restorative sleep. So that's important. But it is also very fixable. With that predominance of Centrals, they may elect to put him on an ASV unit. That version of CPAP therapy will treat Central Apneas quite effectively. On the other hand, they may elect to try him on a regular CPAP machine and see if the CA's don't dissipate on their own. Whether or not they will, probably depends on why they're there in the first place.

In any event he is going to be fine.

It will be good to get him started on the therapy as soon as possible, because I suspect the kid would really really like to experience a nice nights sleep.

So for you; Be concerned? Yes. Be worried? No. You're doing just what needs to be done.

Come back as issues progress and the boy starts his therapy so we can help with any questions/concerns along the way.

[2boysmom]

Thank you so much for your reply, I appreciate it. Yes, he would really love a good nights sleep about now, poor guy!

Hi Mom. The good news is everything will be fine. Bless you and your son for all you have addressed in his young life. The apnea events suggest the boy is not being allowed to obtain meaningful, restorative sleep. So that's important. But it is also very fixable. With that predominance of Centrals, they may elect to put him on an ASV unit. That version of CPAP therapy will treat Central Apneas quite effectively. On the other hand, they may elect to try him on a regular CPAP machine and see if the CA's don't dissipate on their own. Whether or not they will, probably depends on why they're there in the first place.

In any event he is going to be fine.

It will be good to get him started on the therapy as soon as possible, because I suspect the kid would really really like to experience a nice nights sleep.

So for you; Be concerned? Yes. Be worried? No. You're doing just what needs to be done.

Come back as issues progress and the boy starts his therapy so we can help with any questions/concerns along the way.

[trish6hundred]

Hi 2boysmom,
WELCOME! to the forum.!
What a good mom you are, your son is very fortunate to have you looking out for him and being mamabear.
Hang in there for more suggestions and much success to you and your son as he starts his CPAP journey.

[Sleeprider]

I agree with Retire-guy, but not entirely. With his diagnostic study showing that level of central apnea, he will likely be tried on CPAP initially but will quickly progress to bilevel (BiPAP or VPAP) and will likely be prescribed some type of ASV (adaptive servo ventilator) which has the ability to support both spontaneous breaths, and to initiate breaths for the patient. CPAP in the traditional sense would not likely be effective in resolving your son's complex sleep apnea.

The good news is that ASV machines are very good at what they do, usually fully resolving both obstructive and central apnea. Many people have joined this forum with very high numbers of events, and when put on ASV have near zero events and obtain good restorative sleep. Pediatric treatment of complex apnea is a specialty we don't see a lot of here, but there have been some interesting and very successful cases.

Great job working with your son to get him the right treatment so he can enjoy better health. I imagine you will see a pretty significant change once you get him on therapy. Hopefully the titration and dispensing the needed equipment will happen quickly.