Hello, my son was recently diagnosed with moderate to severe obstructive sleep apnea. He also has some centrals that tend to increase when on cpap. I am concerned about the centrals. What is the level of centrals when one should begin to worry. He gets his throat operated on in late feb/ early march.

It is tough being a popular 14 year old and out of nowhere begin to have seizures. We found more then likely its from his O2 going down to 80% a bunch of the night.

I dont have his exact numbers in front of me but I can tell you he hardly REMs and never enters the stage 4 sleep cycle. NEVER .
He was also diagnosed as having "Pathological Sleepiness"

Any good bits of advice?

Hi michiganmom,
My son is almost 11 yrs. old and has been diagnosed with sleep apnea.  Back in June 2006, he had his tonsils and adnoids taken out and even had uvula snipped.  It did not help his apnea.  He know has the c-pap machine.  He has had it for several months and he still is not doing well.  His machine is recording him and the pressure goes up and down by what he needs.  When they downloaded the info they recorded, it stated that he is still loosing O2 and having apnea episodes.  I don't now what to do now.  He is so bad at school.  
I know that this is not giving you any help, but I live in Michigan also and thought that maybe we might be able to help each other.

Please contact if you would like to talk.
Traci
stampcrazy03@yahho.com

Thanks!
And if anyone else has any suggestions, please don't hesitate, I am desperate.

Hi Michiganmom,

You don't say what kind of surgery your son is having, but throat surgery has an extremely low success rate of "curing" sleep apnea and only in mild to moderate cases.  The surgery is extremely painful (search for UPPP in the upper right search field), can cause irreversable side effects and in some cases, make apnea worse.

One reason that he may be having central apneas with CPAP use is that his pressure is too high.  Pressures over the minimal pressure required to open obstructions (as determined by a pressure titration during a sleep study) can cause central apneas.  Is he on a CPAP or APAP?  If an APAP is not set correctly, that can cause central apneas too because of artifactual pressure spikes over the prescribe pressure.

If he is not seeing a physician who is a board certified sleep disorders specialist, then I would strongly suggest he see on.  You can find one near you in the FAQ section as the top post of this form.  You need to thorougly explore your options before you put him through, what may be, a futile and life-altering surgery.

He has "pathological sleepiness" because he has apnea and is not getting restful sleep.  Most untreated apnea patients have pathological sleepiness.

Keep us posted!

Vicki


_________________
That which does not kill you makes you stronger-Friedrich Nietzsche
Friedrich must of had apnea.

Stampcrazy,

Same advice to you.  APAPs do not work for everyone so maybe he needs to be on a CPAP with continuous pressure.  Most APAPs today can be converted to CPAP mode.  Is he seeing a physician who is board certified in sleep disorders?  If not, I suggest the same advice.  If he is, I suggest a second opinion.

Vicki


_________________
That which does not kill you makes you stronger-Friedrich Nietzsche
Friedrich must of had apnea.

Michiganmom wrote:

Hello, my son was recently diagnosed with moderate to severe obstructive sleep apnea. He also has some centrals that tend to increase when on cpap. I am concerned about the centrals. What is the level of centrals when one should begin to worry. He gets his throat operated on in late feb/ early march.

It is tough being a popular 14 year old and out of nowhere begin to have seizures. We found more then likely its from his O2 going down to 80% a bunch of the night.

I dont have his exact numbers in front of me but I can tell you he hardly REMs and never enters the stage 4 sleep cycle. NEVER .
He was also diagnosed as having "Pathological Sleepiness"

Any good bits of advice?

Can you post the numbers ? THey are needed to help with relative advice.

Is he seeing a sleep doctor (respiratory/pulmonary) ?

O2 levels at 80% for a 14 year old is not good. This could lead to permanent damage.

Pathological Sleepiness .............if he is not getting into stage 4 non rem sleep......that is the reason. He is probably falling asleep on his feet.

What surgery is he having done ? Traditionally Tonsillectomy and adenoidectomy give good results for children with OSA.....UPPP would not be a good option.

Please post back some more detail.

Daniel.


_________________
The untreated Sleep Apnoea sufferer died quietly in his sleep.......
Unlike his three passengers who died screaming !!!!!!

(Anon)

Not sure what numbers you need so I will post what I have. I am not exactly sure what is the name of the surgery my son needs but believe it to be the UPPP.  He has abnormally enlongated soft palate, enlarged tonsils, adnoids to be removed. Deviated septum will not be repaired at present time due to his nose is still growing and he is very active in sports. Don't want to fix it and rebreak it and cause second deviation after surgery.

YES, he is being treated by a sleep specialist who is also a pulmonary and critical care doctor. He has recently developed a cough on his cpap. He is on a Respironics CFLEX with heated humidifier. He wears a Resmed Ultra Mirage size Small full face mask. He is started at a level of 4 and "ramped" up to 10 cm within a 20 minute period.

He will be 14 in April.

In his report is says, "An apnea is present and defined by a decrease in airflow to 20 percent at times for 10 seconds or more"
.....
"Repeat polysomnography was performed with nasal CPAP initiated at 4 cmH2O ad titrated to 10. On 10 cm of nasal CPAP with the c-flex comfort level of 3, the patient appeared to have adequate control of his obstructive events, desaturations, snoring, and arousals.".....

" Heart rate and rhythm monitored throughout and found to be in normal limits."...
"No stage IV is ever present with or without CPAP therapy with this patient."

MSLT test results "The sleep mean onset latency throughout all 4 naps was 4.9 minutes. Sleep onset ranged from 4 to 6.5 minutes. There were no sleepon REM periods noted. There were no naps out of 4 without sleep."

Impression
1. Adequate control of this obstructive sleep apnea on 10cm of  CPAP with the C-Flex comfort level of 3.
2. Pathologic sleepiness. Clinical correlation is advised to see if this persists despite nightly use of CPAP and adequate sleep.
3. Recommended follow up assessment to determine the patient's compliance with CPAP therapy and reevaluate his daytime    
    symptomatology.
4. Speak with pediatric ent with regards to surgery. If surgery is needed, retest with repeated polysomnograph within 6 weeks of surgery to re-adjust  level of CPAP therapy and whether therapy is still needed at this time.
5. Observe central apneas in repeat and see if any correlation with new onset seizures. Speak with pediatric neurologist of patient.

His total AHI is 21.0
His total RDI is 24.4
He has 246 arousals per 8.2 hours total sleep time.
He has 201 respiratory events per 8.2 hours total sleep time.
His starting Mean Oxygen Saturation was 96.5 %
His Lowest Saturation of Oxygen was 80.1%
Desaturations 35 or > 233 with index or 28.3
NREM desat. was  181 with index of 22.0
REM desat. was 30 with index of 3.6
Wake desat was 22 with index of 2.7
MT desat. none present with index of 0
Event totals ---    without machine                         with CPAP
Obstructive                  79                                          5
Central                        13                                         19
Mixed                          16                                          3
Hypopneas                   65                                         10

SLEEP SUMMARY
TOTAL RECORDING TIME  9.3 HOURS  OR 560.6 MIN.
TOTAL SLEEP TIME           8.2 HOURS  OR 494.5 MIN.
SLEEP PERIOD TIME         9.1 HOURS  OR 545.0 MIN
SLEEP EFFICIENCY             90%
SLEEP LATENCY                  5 MIN.
LATENCY TO REM             140 MIN.
NUMBER OF AWAKENINGS (NW) 44

SLEEP STAGE SUMMARY
WASO       53.5 MIN
STAGE 1   40.5 MIN
STAGE 2  228.5 MIN.
STAGE 3  140   MIN.
STAGE 4   O MIN
REM           85.6 MIN
TOTAL NREM 409 MIN
MT           0 MIN
SUPINE AND REM 70.5

Michiganmon...

I feel your pain.  My daugther is 12yrs old and has Downs Syndrome and now we have added yet another issue in her medical diary.  I am in the same position as you.  All these numbers and not sure I truely understand any of it.  I have a call into the pediatrician to try to get a better explanation, but I'm not sure what questions to ask??  Have you had any input on the surgeries that are available.

Michiganmom,

I moved your post to the Pediatric section where we now have some great help, thank you, thank you, Tim, with pediatric questions.       

Vicki


_________________
That which does not kill you makes you stronger-Friedrich Nietzsche
Friedrich must of had apnea.

Mmom,
Is your child sleeping with the CPAP every night?  Is your machine at home already set to 10cm H2O?  

The results of the study show that the machine is apparently doing what its supposed to.  While the results of the sleep study do show that there were still some events on CPAP, this does not appear to be at the final pressure only, but rather an average of the entire time on CPAP, which isnt an accurate description of how successful CPAP was at final pressure.  A few centrals may still be common on a single pressure, and at your follow up they may switch to a "bi-pap" pressure, which can sometimes help to decrease central apneas.  The MSLT results show that your child is definitely excessively sleepy during the day, and it is likely a result of the apnea.  

As for surgery, we usually see that happen after most other options are ruled out...That is the reason for your follow-up study.  The doc probably wants to see how your child is doing on a good pressure, and after getting used to wearing the mask at home.  A UPPP is a rough surgery as I'm sure you've heard.  It is more common to have tonsyls/adenoids removed prior to a UPPP.

Yes, Mario is on his CPAP now at home. It is a  Respironics PRO 2 with a full face Resmed UltraMirage mask. He starts out on 4cms and it "ramps" up to the full 10 cms in 20 minutes.

This whole situation was brought about because he started having new onset seizures, just petitmal or absence seizures but still.

After this and that he went from 2 doctors to a team of 7, who do their part in the "Mario health care giving circle".

I will type more.. I need sleep myself.

Thanks for all your help.

Sheila

have you also considered narcolepsy?  The only weird thing about your son's result on his MSLT is the lack of REM sleep during his naps.  Narcos usually go into REM immediately from what I know.  

my son is starting c-pap as soon as we can get him in to pick out equipment....

good luck getting to the bottom of your situation!

tohegal wrote:

have you also considered narcolepsy?  The only weird thing about your son's result on his MSLT is the lack of REM sleep during his naps.  Narcos usually go into REM immediately from what I know.  

my son is starting c-pap as soon as we can get him in to pick out equipment....

good luck getting to the bottom of your situation!

Keep in mind that treatment of OSA symptoms ALWAYS precedes a diagnosis of narcolepsy, and the OSA has to be treated before a diagnosis of narcolepsy can be considered.  We can only assume that the short sleep latency on the naps can be attributed to excessive sleepiness caused by poor sleep efficiency during the night as a result of the obstructed airway and arousals caused by pauses in breathing.  If excessive daytime sleepiness persisted after satisfactory treatment of OSA, then the thought of a narcolepsy diagnosis could be entertained, and a repeat MSLT for the purpose of ruling out narcolepsy would be warranted.  

My guess is that the MSLT results would change drastically once the OSA is treated.