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Lorax
  Unread post  Post subject: We chose Cpap over Surgery for our Child  |  Posted: Wed May 29, 2013 8:42 pm

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My daughter is 7 1/2 years old. At the beginning of the month she had a sleep study done and was diagnosed with Moderate Obstructive Sleep Apnea.

Over the course of 8 hours she had 31 obstructive apneas, 2 mixed, and 27 partial obstructions. The overall AHI was 7.6. REM index was 9.1 and non-REM index was 7.3.

Upon this diagnosis they sent daughter to an ENT to discuss tonsil and adenoid removal. It would take 3 weeks to see an ENT so I began researching and researching. I was shocked that first choice in children even who don't have swollen tonsils and adenoids was removal! Especially without a guarantee that it will fix things.

My daughter also has asthma and hypotonia. So she saw the ENT and upon looking in her mouth and feeling her throat he goes 'Wow! You are not even a bit swollen!' then turned around and started discussing surgery in the hospital that has a PICU available.

My husband and I talked it over and ever discussed it with our families and decided we're not doing surgery on a child who doesn't have swollen tonsils or adenoids. We're going to take the CPAP route. We've discussed this with the pediatrician and pulmonologist. Now we're just waiting for the ENT to fax the reports from her appointment to the doctors and we'll get CPAP on the way.

I just wanted to put this out there so parents know you do not need to do surgery if you do not feel it's proper for your child. You can try CPAP and see how your kid goes. If anyone needs support I'd be happy to give it.


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TheLankyLefty
Unread post  Post subject: Re: We chose Cpap over Surgery for our Child  |  Posted: Wed May 29, 2013 10:16 pm
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I'm really glad that you posted this.

One thing I want to add is that CPAP isn't recommended for children under 7 years of age. If the child is under 7 years of age, then surgery really is the only option. When they're young, the surgical option is about as routine as surgery can be.

Even though the doctor didn't think that they were swollen, did he think that they were crowding the airway?

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Lorax
Unread post  Post subject: Re: We chose Cpap over Surgery for our Child  |  Posted: Wed May 29, 2013 11:07 pm

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TheLankyLefty wrote:
I'm really glad that you posted this.

One thing I want to add is that CPAP isn't recommended for children under 7 years of age. If the child is under 7 years of age, then surgery really is the only option. When they're young, the surgical option is about as routine as surgery can be.

Even though the doctor didn't think that they were swollen, did he think that they were crowding the airway?


Thank you! That's good to know about 7 years old being kind of the 'age'

My daughter's pulmonologist said that since her tonsils and adenoids weren't swollen and have never showed signs of swelling that likely her asthma is related to her low muscle tone and asthma. Her sleep study results even seemed to hint that it was likely more underlying issues.

Just knowing my daughter I don't think the surgery would be a good thing for her right now. Of course if at any point things get worse with her tonsils we'll of course reassess the surgery route there.

Here's what her results of her sleep study were

Quote:
There were 31 obstructive apneas, maximum 18 seconds with a mean of 10.8 seconds; 2 mixed apneas, maximum of 13 seconds with a mean of 13.2 seconds; and 27 partial obstructions, maximum 25 seconds with a mean of 11.9 seconds. The overall AHI was 7.6. REM index was 9.1 and non-REM index was 7.3.

Sleep Analysis: Shows no significant sleep disruption

Respiratory Analysis: Shows moderately increased obstruction with decreased mean saturation and mild hypoventilation.

Impression:
Diagnosis and Recommendations:
1. Moderate obstructive sleep apnea with hypoventilation and low mean saturation. This combination of findings suggests a more significant respiratory abnormality than would be implied by overall apnea frequency alone. Regardless, this degree of abnormality typically warrants intervention.

2. Low mean saturation. This finding is seen in patients with upper airway obstruction, but can also be present in patients with underlying small airway disease such as asthma, intrinsic lung disease, pulmonary hypertension, or cardiac shunt. Suggest Clinical Correlation.

3. Mild hypoventilation. This finding can be seen in patients with long-standing obstructive sleep apnea, but can also present in patients with neuromuscular or chronic lung disease. Suggest Clinical correlation


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TheLankyLefty
Unread post  Post subject: Re: We chose Cpap over Surgery for our Child  |  Posted: Thu May 30, 2013 9:25 pm
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Do you know if there was any End Tidal or Transcutaneous CO2 monitoring? I believe that is required now for people under the age of 13.

Lorax wrote:
Just knowing my daughter I don't think the surgery would be a good thing for her right now. Of course if at any point things get worse with her tonsils we'll of course reassess the surgery route there.
Absolutely. You can't undo a surgery. I'm a proponent of trying to go the least invasive route when possible.

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Lorax
Unread post  Post subject: Re: We chose Cpap over Surgery for our Child  |  Posted: Thu May 30, 2013 9:37 pm

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TheLankyLefty wrote:
Do you know if there was any End Tidal or Transcutaneous CO2 monitoring? I believe that is required now for people under the age of 13.

Lorax wrote:
Just knowing my daughter I don't think the surgery would be a good thing for her right now. Of course if at any point things get worse with her tonsils we'll of course reassess the surgery route there.
Absolutely. You can't undo a surgery. I'm a proponent of trying to go the least invasive route when possible.


I'm not sure about those monitoring. This is what it says she was monitored with:
This study was recorded on the Sandman Elite 9.1, using the following EEG montage: F3M2, F4M1, C3M2, C4M1, O2M1, 01M2, L-EoG, R-EOG, chin EMG, limb EMG, and the following Cardiorespiratory parameters: Sp02 and pulse, EtC02, nasal pressure, airflow, thoracic and abdominal excursion, pulse and ECG


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TheLankyLefty
Unread post  Post subject: Re: We chose Cpap over Surgery for our Child  |  Posted: Thu May 30, 2013 9:45 pm
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Lorax wrote:
Cardiorespiratory parameters: Sp02 and pulse, EtC02, nasal pressure, airflow, thoracic and abdominal excursion, pulse and ECG
Yup! The report didn't mention what the levels were?

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Lorax
Unread post  Post subject: Re: We chose Cpap over Surgery for our Child  |  Posted: Thu May 30, 2013 9:51 pm

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TheLankyLefty wrote:
Lorax wrote:
Cardiorespiratory parameters: Sp02 and pulse, EtC02, nasal pressure, airflow, thoracic and abdominal excursion, pulse and ECG
Yup! The report didn't mention what the levels were?


I think it did! Under 'Respiratory Description'

I'll just give you the whole little bit because I don't know what I'm really looking at much

'There was no desaturation less than 92% with a mean saturation of 96.7%. End-tidal C02 maximum was 55 torr with a mean of 45 torr with end-tidals greater than 45 torr for 8.8% of total sleep time and greater than 50 torr for 0.3% of total sleep time. Respiratory rate was 16-22 breaths per minute.'


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TheLankyLefty
Unread post  Post subject: Re: We chose Cpap over Surgery for our Child  |  Posted: Thu May 30, 2013 10:05 pm
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Ah...those numbers are on the high end of the expected EtCO2 spectrum. There's the diagnosis right there.

Is the CPAP being used as of yet? The mask selection for peds is pretty minimal. The ResMed Pixie is a pretty good option and even comes with a childrens book about apnea and CPAP. It's actually pretty cute.

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Lorax
Unread post  Post subject: Re: We chose Cpap over Surgery for our Child  |  Posted: Thu May 30, 2013 10:14 pm

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TheLankyLefty wrote:
Ah...those numbers are on the high end of the expected EtCO2 spectrum. There's the diagnosis right there.

Is the CPAP being used as of yet? The mask selection for peds is pretty minimal. The ResMed Pixie is a pretty good option and even comes with a childrens book about apnea and CPAP. It's actually pretty cute.


Not yet, we're waiting for insurance and the doctor to fight it out lol. I have seen the pixie online. I really think that's one we will try. Daughter is a very small girl lol

I did notice there is very very little in the way of Ped masks. It sucks


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TheLankyLefty
Unread post  Post subject: Re: We chose Cpap over Surgery for our Child  |  Posted: Fri May 31, 2013 10:03 am
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Another is the Kidsta. It's the exact same as the ResMed Vista...which I love. Unfortunately the Kidsta is just a different cushion on the same adult frame. Poor little faces can barely see out from behind the mask. I wonder is the Wisp could be used for kids. It's pretty small and may work.

She's about the same age as my oldest son, so I can imagine all masks look big for them!

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Lorax
Unread post  Post subject: Re: We chose Cpap over Surgery for our Child  |  Posted: Fri May 31, 2013 11:31 am

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TheLankyLefty wrote:
Another is the Kidsta. It's the exact same as the ResMed Vista...which I love. Unfortunately the Kidsta is just a different cushion on the same adult frame. Poor little faces can barely see out from behind the mask. I wonder is the Wisp could be used for kids. It's pretty small and may work.

She's about the same age as my oldest son, so I can imagine all masks look big for them!


Thanks for the information on the Kidsta. I looked it up and it does look like it would be HUGE on her.

Do you know anything about the Sopora Pediatric Mask?


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TheLankyLefty
Unread post  Post subject: Re: We chose Cpap over Surgery for our Child  |  Posted: Fri May 31, 2013 11:52 am
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No, I looked it up just now and it looks like any other adult nasal mask. Is it just smaller?

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Lorax
Unread post  Post subject: Re: We chose Cpap over Surgery for our Child  |  Posted: Fri May 31, 2013 12:33 pm

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TheLankyLefty wrote:
No, I looked it up just now and it looks like any other adult nasal mask. Is it just smaller?


I have no idea. LOL I'm just trying to get an idea of what exactly is out lol


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Chunkyfrog
Unread post  Post subject: Re: We chose Cpap over Surgery for our Child  |  Posted: Wed Oct 18, 2017 5:17 pm
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Just adding an additional mask to the list: Sleepweaver Advance pediatric, by Circadiance. Cloth masks are a different experience than silicone. Kids need more options.

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