mom of 4 year old diagnosed with central sleep apnea

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mom of 4 year old diagnosed with central sleep apnea

Postby momof2 » Fri Jul 17, 2009 2:38 pm

Hello I would like to share my daughters story in hopes to find some answers or help.

My daughter was 18 mons old when she started waking up requently at night screaming. I took her to the pediatrician who told me it was just nighterrors not to worry but I was persistant and said there is more going on because she always has enlarged tonsils as well. The pediatrician agreed then to get her a sleep study and if it indicates obstructive sleep apnea she can then recommend an ent to remove her tonsils and adenoids. The results of he first sleep study was herendous. She had 7 central apneas with a max duration of 25seconds and 35 hypopneas with a max duration of 16seconds. Her breathing resulted in occasional signifigant hypoxemia to a low o 80%. To say the least she was sent to an ENT and her tonsils and adenoids were removed in december of 2007. The ENT ensured me that she would be sleeping better by Febuary in her case that didn't happen. She was still waking fequently through the night and still having difficulty swallowing food which she had all along so of course I said whats next well another sleep study was done and by their suprise it was worse than the first. Results were more than double with 23 central apneas and 45 hypopneas with a SpO2 of 80%. I then requsted she see a Sleep specialist so they recommended Hershey Medical Center where of course they did another sleep study which indicated 15 Central apneas and 1 obstrutive apnea with an SpO2 of 81%. The recommendation I recieved was to say the least bull !@#! The doctor told me she'll grow out of this and recommended I test her once a year until she did.

I refused this answer and went back to the pediatrician and said find me another doctor. They set me up with a Doctor from the Childrens hospital of Philadelphia so of course I take her there for yet another sleep study. All the other sleep studies I had to wait for resluts or 2 weeks this wasnt the case. Her sleep study was on febuary 18th of 2009 we left the hospital and the technitian told me that I should have the results in one to two weeks so we went home. Of course my daughter and i took a nap because we were tired from sleeping in a hosptial with interruptions all night. TO my suprise my husband wakes me up saying that the doctor was on the phone and needed to talk to me asap. So of course I was freakin out the doctor told me to bring my daughter back asap she needed to be admitted and that her codition was servere. So of course I fly back to philly and they admit her giving her another sleep study with an oxygen supliment. Then the following day she had an MRI, chest x-ray and blood work out the wazoo. She stayed in th hospital 2 nights and i was unable to discharge her until we had an oxygen company have all this equiptment set up in our house.

So my daughter was diagnosed with idiopathic central sleep apnea because all her results came back normal. I can't except that answer and am trying to research as much as possible about central sleep apnea and am at wits end. My daughter if you look at her is an average 4 year old girl with no abmormalities by looks but boy she sure is sick a lot. She still has difficulty swallowing and always seems to be sick. I wish I could help her but I cant. We have a follow up in philly in september and am expecting a call next week from philly on my request to see a nerologist to see if theres a possibility she could have a nerological disorder that can't be detected on an MRI because i read about central apneas and dificulty swallowing to be linked. If there is anyone out there who has any suggestions my ears are opened.

Thanks for reading this

Lost in Pa
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Postby ApexAZ » Fri Jul 17, 2009 3:17 pm

Central apneas are a result of your brain not sending the signal to breath during sleep. Obstructive apneas are a physical blockage in your airway preventing you from breathing in your sleep.

Based on the information you provided, it sounds like your daughter is experiencing mostly central apneas with some obstructive apneas as well. This is called complex sleep apnea and typically has to be treated with a I think a VPAP. Hopefully someone with more experience with this type of complex sleep apnea can chime in and provide some more information about it.

The Tonsilectomy probably helped with the obstructive apneas, but it won't help to treat the central apneas. Perhaps a neurologist with a subspeciality in sleep medicine would be the next step?

I don't know if a child will 'grow out of it' or not. There is information about both obstructive and central apneas stickied at the top that might be of interest to you.

Good luck to you and your daughter. I hope she starts to feel better soon!
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Postby Vicki » Sat Jul 18, 2009 1:51 am

Momof2, I moved your post to our pediatric forum. Adult apnea is handled much differently than pediatric apnea and we have some great parents over there who have been through more than you can possibly imagine and I am sure will have some good advice and support for you.

Vicki
Being defeated is often a temporary condition. Giving up is what makes it permanent.
Marilyn Vos Savant

That which does not kill you makes you stronger-Friedrich Nietzsche
Friedrich must of had apnea.
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Postby momof2 » Sat Jul 18, 2009 11:52 am

Thanks so much for the response. Her problem is mostly central apneas and I am expecting a call next week from her pulmonologist in Philly she's supposed to be in touch with the neurologist down there and they are going to determine wether or not she should be seen by the neurologist. I'm hoping they come up with something because It seems as though they are getting annoyed by me pushing to find out whats causing this. The thing they don't understand is I will never stop trying to help my daughter or to find an answer I took on that role when I decided to have children. I'm just glad I found this forum to see if I can help or I can get help. I wish lots of luck to everyone out there!

Thanks so much
momof2
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Postby Shoemaker » Tue Jul 21, 2009 2:33 pm

Momof2,
I am in Pa and have gone through a similar story as you and your daughter.
My daughter is 4yrs old and also went to the ENT and Pulmonologist with sleep apnea
symptoms. They said the same thing about it being normal periodic breathing and would go away in time. We insisted on a sleep study which showed severe central sleep apnea. She was aslo diagnosed with delayed swallow relflex. That lead to an MRI which showed a Chiari Malformation. After 2 surguries her apnea seemed to be gone but came back 3 months later so she just had another sleep study. She is also totally healthy and active other than the central apnea and swallow. Any questions feel free to contact me:
wgshoemaker@ehd-ins.com
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Have you tested your daughter for reflux?

Postby John32 » Tue Jul 21, 2009 10:21 pm

I´m no doctor, but I have sleep apnea and difficulty swallowing, and chronic reflux.

Central apnea and swallowing issues shouldn´t be linked, unles it´s something neurological, some degenerative or seroious disease. And if your daughter doesn´t have any of these, maybe you should have her checked for reflux.

I´m not saying she has it, but it´s worth the try, if you haven´t already done so.

There are special CPAPs for central and complex sleep apnea. Why isn´t your daughter on this already? I mean I know you´re trying to find out the cause of her central apnea, but she should be on a machine at night to prevent her apneas in the meantime.

I met this lady once that had a 6 months or 1 year old daughter with central apnea, and her insurance company gave her a sleep apnea monitor device with alarms and everything to keep track of her apneas. Also oxigen like you. She also has someone watch her sleep all night. It´s a delicate situation when a chid or baby has sleep apnea.

I feel for you and I hope your daughter is doing better. Again I´m no doctor, I´m just trying to help.

John
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john

Postby momof2 » Wed Jul 22, 2009 5:37 pm

thanks for the reply! maybe i should get her checked for reflux but I heard the test can be dificult for children she never complains of stomachache or hearburn her problem mainly is she can't swallow her food it never gets to her stomach it's like it gets stuck in her throught then gags it back up. It's also a good point that u brought up about the c-pap and other devices that knowone has given my daughter. Truth be told if I didn't change doctors she wouldn't have the oxygen by nasal canulas and her heart monitor thats in her room now. I think doctors don't how to treat this in young children. I'm trying to keep my daughter with the pulmonologist we have now because shes got the best credentials in the US but i do think she could be doing more. They finally called me on yesterday and said she needs another polysonogram and that they dont think at this point she needs to see a neurologist. Though i called one anyway. I try to be patient but i can't when shes up crying all the time. It gets to me everyday that knowone aroud us understands whats shes going through.
Thanks again for your info and I'll be sure to speak to her pediatrcian about reflux
Thanks again

momof2
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Postby John32 » Wed Jul 22, 2009 11:19 pm

[b]Yeah, if you don´t bother the doctors no one else will do it for you. My friend had to do a lot to get this equipment installed at her daughter´s room to monitor her apneas at night.

She says it´s sort of a diagnostic to sit and wait for babies to get better from central apneas. Something related to an immature brain causing central apneas in babies. I don´t know if this applies for your daughter, for I think she´s not a baby anymore.

If you´re not doing this already, it can´t hurt to watch your daughter´s sleep. Either having someone watching her all night or watching her sleep from time to time whenever you can. All sleep doctors ask you that when you first see them for sleep or apnea problems. I´ve never had a sleep partner and I know it would be useful in my consufing apnea diagnosis. It helps know which type of apnea the patient has.

You don´t have to have stomach ache to have reflux. Not even heartburn. There´s Laringo Paryngeal Reflux (LPR or Silent Reflux). This one doesn´t have the classic symptoms of reflux. And you don´t have to have your daughter have the PH metry test. An ENT can look at her throat and try to make a diagnosis.

Is your daughter tired during the day? Did she have her tonsils and/or adenoids removed? I don´t know if kids your daughter´s age are put on CPAP for treatment of Sleep Apnea...

John.
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Postby shelee » Fri Jul 24, 2009 5:33 pm

I haven't read through your entire thread, but there was something that caught my attention that I wanted to comment on. You said that your dd hasn't been tested for reflux, that she didn't seem to have the classic sypmtoms of having it but that she did have problems with swallowing and that her food would often get stuck in her throat and come back up.....

Has she ever been scoped and tested for an eosinophilic disorder such as eosinophilic esophagitis?? This is a link to a support group (APFED) that covers symptoms of EE.... http://www.apfed.org/

Also, my ds was nearly 4 when he was dx'd with central apnea. He had an AHI of 10.8 (something like 55 centrals along with hypopneas and obstructive apnea events) and was immediately scheduled for a titration study. He's currently using a Resmed Adapt SV when he sleeps. Treatment options are available for kids that young but most aren't FDA approved and there really aren't any/many masks for faces that little.
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