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Old 08-08-2006, 08:27 AM   #1
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hannahph HB User
sleep apnea question

I have been lurking for a bit now and finally decided to post. I am a stay at home mom and do daycare. I have two children, my daughter is seven and has Down syndrome and a three year old son. My question is about sleep apnea. When my daughter was four she had tonsil and adnoid removal due to sinus issues and sleep apnea. This seemed to solve the issue. Now three years later I have noticed increased snoring. We have an appointment in Sept. with he ENT and I am going to ask for a repeat sleep study. What I am wondering is besides T&A surgery what can they do? I know there is no way that she would wear a CPAP machine.Anyone ever deal with these issues?

 
Old 08-08-2006, 10:52 PM   #2
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Karen W. HB User
Re: sleep apnea question

Hi,
I have a Down Syndrom son and he dose snore-(loudly), He did have his tonsils out about 7 years ago but now he is snoring again, they have decided that he has allergies, we just started Rhino court and singular and it dose seem to be working, It's kind of odd how we discovered it, he had to take steroids for about two weeks because he had gotten Bells Palsy, once he started taking the prednison, his breathing was so quiet, I noticed it the first night he was on it, This continued the entire time he was on prednison, I told the Doctor this and that is when he started the allergy medication.
Good Luck To You, Karen W,

 
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Old 08-16-2006, 04:44 PM   #3
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Luckyunk HB User
Re: sleep apnea question

Hi. I have a 48 yo Downs brother (the light of my life), who had severe obstructive sleep apnea, plus allergies. For the allergies, he's on zyrtec, singulair and Nasonex & Advair for the asthma. We looked into both surgery and use of cpap, decided to start with cpap since even if the full surgery (there are different levels of procedures) worked, studies show that the benefits usually only last for 5 years or so.
We tried more masks than Carter has peanuts, without success. We decided to try the surgical route, so just last October Pete had his tonsils, adenoids, & uvula removed, a modified rhinoplasty to remove an obstruction on his septum, his sinuses "roto-rootered", and lord knows what else. ANYWAY, the surgery was not a total success. The only thing it accomplished was that we were able to lower the cpap pressure to a "7", making it easier for him to tolerate the cpap, and the snoring did become markedly softer (his sleep apnea was reduced in severity). Next, we had to find a different mask. Turns out he needed a full mask (only one brand worked for him -- ResMed Mirage,and it hadto be a size small). I worked with him so that now he can usually keep the mask on for most of the night, but I always have to put it back on if he's taken it off to go to the bathroom in the middle of the night.
Just so you know, there are several newly designed masks out there that more people are tolerating that don't involve covering the nose at all --Fisher & Paykel make one that goes in the mouth and stays in by sticking to the insides of the cheeks. Then there's another one made by cpap Pro ([url]www.cpappro.com[/url]) that seems promising.
There's also another surgical procedure that has only recently been approved for sleep apnea (it used to only be approved for snoring). It involves placement of a dacron implant in the back of the throat. Can't remember the name of the procedure, but any good ENT will know what you're talking about.
I just joined this board, and this is my first post. Hope it helped you. I'm now going to post my own question -- hope someone has some info for me, too.
All the very best to you and your son.
PS: For the future, people are very willing to label our Downs guys as having early onset alzheimers, (it happened with my brother 15 yrs ago), when often times the symptoms are easily explained by the sleep apnea -- forgetfulness, moodiness, fatigue, daytime drowsiness, etc. Just so you're aware in case any "Knowledgeable professional" decides to label your kid unfairly.

 
Old 10-03-2007, 09:29 PM   #4
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GenesSister HB User
Re: sleep apnea question

I also have a brother with Down syndrome who also has sleep apnew/copd, he is 50 years old and has a tracheotomy. He sleeps with a ventilator (not a CPAP) and oxygen. Growing up, he always snored very loud and seemed to have chronic stuffy nose. His sneezes were legendary. About 20 years ago, he go to the point where he would wake up gagging and/or vomiting. At that time he was evaluated for sleep apnea and it was determined that he stopped breathing for up to two minutes at a time (no wonder he could sit at the bottom of a pool for so long). The treatment at the time was to perform a tracheotomy. He came to live with me in 1989 when our mother passed away. I found that even with the tracheotomy that he was always getting infections and was still gagging and choking at night. He was evaluated and it was determined that he needed the ventilator with oxygen. He has learned to turn the machines on himself and connect them. He also learned to suction himself when he needs it. While he is considered low functioning, he has an extremely high will to live, it is this will to live that motivated him to learn how to work with the various machines he needs.

 
Old 10-15-2007, 01:32 PM   #5
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hannahph HB User
Re: sleep apnea question

I just noticed that this post had been reserected and thought I should post an update. My daughter is almost nine now. She does indeed have sleep apnea. She has been On CPAP sucessfully for five months now.I thought there was no way she would ever tolerate it but she is doing extremely well with it. Thank you for your replies.

 
Old 09-17-2008, 01:18 AM   #6
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chanagz HB User
Re: sleep apnea question

what a wonderfully helpful posting.Thank you so much.We are also considering surgeryfor sleep apnea, ,including a second-time-around tongue reduction for my 20-year-old son (who is also the light of my life :-)
I'm sorry yours was not successful, and we've also been told that only 40 percent seem to gain from surgery.what have you heard bout dental implants?that is the route I am ollowing together wth hunting for the best surgeon to do this second-time tongue reduction.
Would you recommend anyone?
G-d bless
Chana from Jerusalem

 
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