6 Year Old Newly Diagnosed with OSA/CSA

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
frantic.mom

6 Year Old Newly Diagnosed with OSA/CSA

Post by frantic.mom » Thu Feb 19, 2015 3:13 pm

I am hoping some other parents can help my anxiety about my son needing a Bipap. My son is 6 years old. On his 1st sleep study, it only showed OSA. We were referred to an ENT. After the ENT performed a sleep endoscopy, his epiglottis was covering his whole airway while sleeping. We had surgery in December for this. The ENT was optimistic that the surgery would fix his low oxygen levels at night. About 2 weeks after surgery, we had a bout of him throwing up some major blood clots and blood. We went to our local Emergency Room, and they didn't see any active bleeding. This past weekend we had another sleep study, the sleep lab actually stopped the study because of his low oxygen levels. He was also retaining a high level of carbon dioxide. He was admitted the day after to the hospital for management of his sleep apnea. They put him on a bipap machine with a rate set which helped tremendously. Now we are in the process of trying to get one at home. Insurance is the hang up with that. So now we are at home without one, and I worry every night about him. I just feel so overwhelmed. We were so optimistic about the surgery and now this. My son has some fine and gross motor skills delay, but we were thinking it was coming from the apnea. Those are the only other issues he has. He was never sick until he went to kindergarten. We are still waiting on more test to try to determine the true cause of this.
1) Has anyone's sleep study showed obstructive the first time and then some central on the following ones?
2) Has anyone's child every outgrown their cpap/bipap machine?
3) How has your child adjusted to this?

Please share your thoughts and experiences with your child having sleep apnea.

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Huh?
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Re: 6 Year Old Newly Diagnosed with OSA/CSA

Post by Huh? » Thu Feb 19, 2015 3:32 pm

frantic.mom wrote:some central
How many over what period of time?

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Re: 6 Year Old Newly Diagnosed with OSA/CSA

Post by frantic.mom » Thu Feb 19, 2015 3:38 pm

On the 1st Sleep Study, he averaged 127 to 130 events per hour. We haven't received the results from the previous sleep study so I don't know how many he had. He did not have any central apneas on 1st sleep study.

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Julie
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Re: 6 Year Old Newly Diagnosed with OSA/CSA

Post by Julie » Thu Feb 19, 2015 3:47 pm

Your doctor should be running interference for you with all of this with the insurance co. and if he/she isn't, find another one immediately. If the MD does not really understand OSA or whatever version of it your son may have then he should refer you on an urgent basis to someone who does, most likely a neurologist or pulmonologist, preferably pediatric, but not necessarily.

Unfortunately most people don't 'outgrow' apnea any more than they would diabetes, but because he's a child, things may be different depending on how treatment and other factors go, plus technology is making strides quickly to deal with things and there may be different answers in the future.

Some (though not 'many') centrals can be present in anyone close to the time of drifting off and awakening, but the time to worry would be if there were many throughout the night.

What equipment do you have now - as full a name and model # of machine as possible, and what mask?

Just a question - is your son appreciably either overweight, or does he have a narrow jaw with an overbite (both often go with apnea and at least the first can be managed to help, if not cure apnea). You also said he's somewhat delayed, and I wonder if that's related to possible problems with centrals - again, something for a neurologist.

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Re: 6 Year Old Newly Diagnosed with OSA/CSA

Post by Huh? » Thu Feb 19, 2015 5:48 pm

frantic.mom wrote:He did not have any central apneas on 1st sleep study.
I have 8 to 12 centrals per night and have been told this is normal and nothing to worry about. It doesn't mean I have central apnea.

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Re: 6 Year Old Newly Diagnosed with OSA/CSA

Post by Sleeprider » Thu Feb 19, 2015 7:01 pm

Do you know exactly what machine you are looking for? There are several adaptive servo ventilator bilevel machines available on this forum. If you know, list the model name or number. Pediatric apnea is not something I've seen commonly on the forum, so it would help if we knew what your needs are.

Unfortunately, insurance and the process of dispensing the right equipment takes some time, but it will come through. You need to be the advocate that gets this through the system faster. Do you have the prescription? Have you identified why there is a delay in dispensing the prescribed equipment?

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Re: 6 Year Old Newly Diagnosed with OSA/CSA

Post by archangle » Thu Feb 19, 2015 7:46 pm

Welcome to the board.

Unfortunately, you're swimming with the sharks of the medical mafia here.

Surgery is rarely the correct option for sleep apnea. Sometimes it is, but there are an awful lot of people who end up with no improvement or worse off after surgery with significant side effects.

The next screwing you're likely to get is the insurance and the DME (CPAP salesman).

Insurance may very well require you to try CPAP and "fail" before they'll give you a bilevel. (BiPAP is a trademark for bilevel.)

Then they may require you to try and fail a bilevel machine before you can get an ASV if you need that.

Grit your teeth and fight your way through the system.

You need to be sure that all the machines you get are fully data capable machines. Without this, neither your doctor nor you can monitor the way the therapy is going in your home. With this, you can monitor things yourself and see if your son is still having apnea. Warning, the doctor will tend to ignore the data the CPAP collects for various reasons, including that the medical mafia prefers the data from $leep te$t$.

Read the "Useful links" in my signature line below to avoid getting screwed with the wrong machine.

If it's midnight and a DME (or doctor) tells you it's dark outside, go and check for yourself.

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Re: 6 Year Old Newly Diagnosed with OSA/CSA

Post by Morbius » Fri Feb 20, 2015 4:49 am

archangle wrote:Surgery is rarely the correct option for sleep apnea.
That is not correct.

No matter what investigative tool is used, surgery is the front line treatment for OSA in children:

Meta:
Results
The meta-analysis included 1079 subjects (mean sample size of 42 patients) with a mean age of 6.5 years. The effect measure was the percentage of pediatric patients with OSAHS who were successfully treated (k = 22 studies) with T&A based on preoperative and postoperative PSG data. Random-effects model estimated the treatment success of T&A was 66.3 percent, when cure was defined per each individual study. When “cure” was defined as an apnea-hypopnea index (AHI) of <1 (k = 9 studies), random-effects model estimate for OSAHS treatment success with T&A was 59.8 percent. Postoperative mean AHI was significantly decreased from preoperative levels.

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Re: 6 Year Old Newly Diagnosed with OSA/CSA

Post by Morbius » Fri Feb 20, 2015 5:01 am

OTOH, the OP history gives me total bafflement. If the little guy had laryngomalacia, time alone would have (or be) corrected that. OTOH2, by 6 that should have been happening by now. So if we're talking new-onset laryngomalacia, and now a whole pile of central apneas, then there must be something else underfoot.

Can you get the long reports from both studies (not the physician summary, the raw technical data) and scan them in?

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Morbius
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Re: 6 Year Old Newly Diagnosed with OSA/CSA

Post by Morbius » Fri Feb 20, 2015 5:17 am

Huh? wrote:
frantic.mom wrote:He did not have any central apneas on 1st sleep study.
I have 8 to 12 centrals per night and have been told this is normal and nothing to worry about. It doesn't mean I have central apnea.
Yeah well if you were 6 it would.

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Re: 6 Year Old Newly Diagnosed with OSA/CSA

Post by Janknitz » Fri Feb 20, 2015 10:22 am

I am shocked that the hospital discharged him WITHOUT needed equipment-- that is an improper discharge. The hospital discharge planner, the respiratory therapist, and the doctor should have been working to get the insurance approvals before discharge and then made sure that the DME got the equipment in place before he was allowed to come home. Imagine if he needed oxygen but was sent home without it while the insurer and DME bickered. Inexcusable!

While he was still in the hospital there was some leverage. The insurer is going to pay a lot more for extra hospital days, so they would be more motivated to get him the equipment to go home. And the discharge planner/social services should have been moving heaven and earth to find equipment for him, even a loaner if necessary. (The DME might have stepped up to offer a loaner, too). The doctor should have been roaring, and should not have signed discharge orders without equipment. You should file a complaint against the hospital.

You were FAILED by the professionals.

You are going to have to put on your tiger mom costume and not let these bumbling idiots ruin your child's health. Here it is Friday, and if you don't have a machine for him today you will probably have to wait into next week. Get on the phone, stop being polite, throw out the word lawsuit often, and make sure he has a machine by nightfall by hook or crook. No more Mrs. Nice Gal.
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Re: 6 Year Old Newly Diagnosed with OSA/CSA

Post by frantic.mom » Tue Feb 24, 2015 3:56 pm

Sorry I have not posted sooner. Here is the results from his sleep study which shows no central apneas. It is still showing obstructive and hypoventilation. We are still waiting on a machine as well. The doctor will only let him have a Respironics Trilogy. We have had a hard time finding a provider for this particular machine. From what I have found that the machine is rather expensive and even with insurance co-pays still more than what we can afford, but we will do whatever to make it work. He is not overweight and did not have any health issues until he started kindergarten. When he started school, he ended up with pneumonia twice in 6 months, and it has been downhill since.

The patient had 300 respiratory events throughout the entire sleep study. These were described as hypopneas giving him an overall study apnea-hypopnea index of 52.4 respiratory events per hour of sleep, a REM apnea-hypopnea index of 44.1 respiratory events per hour of sleep. His apnea-hypopnea index according to position was as follows: Supine 0, side 52.4, prone 0, upright 0. His lowest oxygen saturation associated with a respiratory event was 64%. His longest duration of desaturation was a 50-second obstructive hypopnea with a minimum O2 sat of 71%. The diagnostic portion of the study was 70 minutes, 20% of which was REM sleep with an apnea-hypopnea index of 76.3 respiratory events per hour of sleep. The patient was started on CPAP, but had trouble tolerating CPAP with difficulty exhaling, so he was placed on BiPAP at 8/4 and titrated to 11/6. Despite BiPAP pressures ending at 11/6, he spent 107 minutes at 11.7% of which was REM sleep reducing his apnea-hypopnea index to 35.9 respiratory events per hour of sleep. At this final BiPAP pressure setting, he was added 2 liters of oxygen and his sats still ranged from 83-92% on 2 liters. It is noted that his baseline oxygen saturations while awake were 96-98%; however, shortly after sleep initiation dropped into the 70s on prior to addition of positive pressure ventilation. Despite a BiPAP of 11/6 with 2 liters of oxygen, he continued to have oxygen sats ranging from 83-92%. The patient's baseline transcutaneous CO2 totals were at 55 and during the course of the night they rapidly increased and 100% of the study was over 50 and the majority of the study was between 70-77 with a maximum transcutaneous CO2 level of 91. It is noted on his final BiPAP pressure of 11/6 he had continued elevation of the transcutaneous CO2 levels to the 70s.

The patient had 5 awakenings during the night and 37 minutes awake after sleep onset he had 145 arousals, 20 of which were spontaneous and 125 associated with hypopneas.

The patient had 14 leg movements which were considered periodic giving him a periodic limb movement index of 2.3 events per hour of sleep. His EKG was unremarkable with an average asleep heart rate of 121. The EKG was significant for tachycardia with an average asleep heart rate of 121. His EEG was unremarkable. He did demonstrate severe hypoventilation with minimal respiratory effort while asleep. His sleep patterns did appear more hypoventilatory than obstructive sleep apnea.

IN SUMMARY, Patient is a 6-year-old male with a previous past medical history of severe obstructive sleep apnea which was diagnosed on November 5, 2014, with an apnea-hypopnea index of 123 respiratory events per hour of sleep, a REM apnea-hypopnea index of 132 respiratory events per hour of sleep and a low oxygen saturation of 80%. He had hypoxemia with 281 minutes of the sleep study oxygen saturations between 80-89%. He had evidence of hypoventilation by transcutaneous CO2 monitoring with the majority of the study above 50 and a maximum of 59. The study demonstrates severe apnea, hypoxemia and hypoventilation. Despite BiPAP pressures of 11/6 with 2 liters of oxygen he had continued severe obstructive sleep apnea with an apnea-hypopnea index of 35.9 respiratory events per hour of sleep, oxygen saturation between 83-92% and severe hypoventilation.

He has had a subsequent sleep study which shows he does best on volume ventilation.

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Re: 6 Year Old Newly Diagnosed with OSA/CSA

Post by archangle » Wed Feb 25, 2015 2:42 am

Respironics has AVAPS and ResMed has iVAPS machines for hypoventilation.

Probably considerably cheaper and easier to get than Trilogy. However, they don't do all the things the Trilogy will do.

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Re: 6 Year Old Newly Diagnosed with OSA/CSA

Post by Morbius » Wed Feb 25, 2015 5:27 am

archangle wrote:Respironics has AVAPS and ResMed has iVAPS machines for hypoventilation.
He does not quite qualify for AVAPS:
including children as young as seven years of age and who weigh more than 40 pounds.
but iVAPS is approved for children:
Pediatric clearance — cleared to treat pediatric patients weighing more than 30 lb (>13 kg) and available in a child-friendly design. iVAPS is cleared for patients weighing more than 66 lb (>30kg)
Has he had his tonsils and adenoids out?

BTW those results are HORRIBLE HORRIBLE HORRIBLE.
Last edited by Morbius on Wed Feb 25, 2015 5:30 am, edited 1 time in total.

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Re: 6 Year Old Newly Diagnosed with OSA/CSA

Post by Julie » Wed Feb 25, 2015 5:30 am

And for what it's worth try to keep him from sleeping on his back (pillows in behind, etc) because that provokes the most apneas.