My daughter has had plenty of issues in her life time so I will just avoid a very long history. She is about 28 months old now (2years). She was diagnosed with apnea, central, obstructive and hypopneas when she was about a month old and was discharged from the NICU on an apnea monitor. She was discharged off of it due to lack of alarms about six months later. She had a repeat sleep study when she was 13 months old and they said all was normal aside from snoring. I often wonder if that test was actually normal considering the fact that she did not even sleep. I know this because I was there. I can't see how they could have possibly gotten an accurate reading from that study and expressed my concerns with the doctors, which were dismissed anyways. She has been hospitalized countless times for other issues. She has a g-tube and had surgery to correct reflux. She is also hypotonic. She sleeps 12-15 hours a night and takes 3-4 hour naps. These sleeping times have only been increasing as time goes on. She was diagnosed with reactive airway disease this February. She also has seizures. She is totally, cognitively normal and is actually above average in smarts. She does see a PT, ST And OT. She wears an AFO on one leg. She takes pulmicort once a day and zeopeonex four times a day. She takes singulair as well and she has delayed motility as well and takes reglan. She takes Keppra for seizures. She used to be able to tolerate sedation, but lately has been having a more difficult time with it and last time she was sedated, she had to be admitted for respiratory distress.

I'm thinking that it is time to tie all of this together. I have been in a constant battle trying to figure out what exactly is wrong with my daughter, but last week freaked me out enough to where I will demand some answers on the apnea topic. She has been sleeping in her room since the beginning of time. I had always noticed that she was a loud breather in the nighttime. She snores, snorts and takes a lot of deep breaths. It wasn't until last week, when she was sleeping on the recliner in my living room when I started to really do some research on this and realize that she has ALL the symptoms of obstructive sleep apnea and I just can't ignore this. Last week, when sleeping on the recliner, I was listening to her sleep and she paused multiple times from breathing but only for brief seconds. She snored and snorted, but then she just stopped breathing... I waited... and all of a sudden she gasped loudly and it sounded like stridor followed by a coughing fit. This had my heart racing and I realized that i couldn't shake the thought of her possibly never coming out of it again. I got on the internet, did lots of research and realized that she could very well still have apnea and that the test that she had last year might not have been an indication of anything solid. It scares me even more because when she was an infant, she did this often, turned blue and one time I had to call 911 and start the steps of CPR.

Here are her symptoms:

Chronic fatigue, which may or may not be linked to apnea (we are looking into a mitochondria disorder)
Snoring (which come and go through the night)
Flaring nostrils
Restlessness during sleep (she is constantly tossing and turning and mainly sleeps with her knees tucked under her chest and butt up in the air)
Stuffy nose (I realized that this was a symptom when i looked it up. She does have stuffy noses all the time particularly at night. It is not wet snot, just dry boogies and a really stuffy nose. Sometimes, her nose bleeds too.)
Major mouth breather (I am not sure if she has ever breathed through her nose)
Gasping with sudden awakenings
Coughing fits
Her lips get very dry and cracked and they bleed.
I'm sure there are more, but my mind is blank at the moment

One other thing that may or may not be related to sleep apnea but i would like to know if it is, her voice comes and goes. She gets raspy often and sometimes can't make a sound if it is really bad. I talked to her ST about this and she said that it was due to scaring on her vocal cords from the severe GERD that she had. I still don't understand why it is still there eight months after surgery. Any thoughts?

I am planning on seeing the Pedi tomorrow and would like to be armed with info.

Thanks in advance.

Hi, TiffanyCuff,

You indeed have a long history and I am sorry your little one is going through so much.

I know you have posted here many times, so I don't really have much to add, except demand another sleep study. EVERYTHING you describe fits the bill for OSA. My son's first test was so perfect, even the pulmo dr. was amazed. Several months later, when it was repeated, "suddenly" he had moderate sleep apnea.

When there are as many questions and symptoms as you listed, it is only right to do another test.

I wish I could give more advice. Please let me know what happens.

Take care,

Judi

Judi,

I should have made a note at the beginning of that post. Another new member on here was having trouble getting a new topic to post, so she emailed me what she wanted posted and I posted it for her...

My son, Isaac, who is 2 years old next week, has Central Sleep Apnea and is going back to the pulmonologist on May 30th to try and get an apnea monitor with pulse oximeter for data retrieving purposes.

Tiffany

Thanks, TiffanyAcuff for posting for me. I don't know why I can't start a new thread, but I can reply to posts. Thanks again.

I talked with the pediatrician who seemed to have common concerns with me about it. He is ordering an apnea monitor and pulse oximeter but due ot insurance purposes, he does not believe that we will get one without a current sleep study. So he is going to order a sleep study as well. I'm just glad that he listened to me!

Well, Time to go. I'll come check back in later.