PLEASE HELP! Anyone Have a Baby with Sleep Apnea?

Tia, Your not crazy!! Good Heavens!! Your child is in distress, should be seen by the best there is. I thought Childrens Mercy was the best around. ER's have to accept your insurance I believe, especially if you go by ambulance.

Tia I went to the Mayo Clinic site. and typed in Central Apnea "Infants" came up with Polio site. Nothing else.
I left off infants and there is a whole list of results reasons for, conditions. etc.

It is all very alarming that Mercy Has done Nothing to help you baby. I would be Livid, and screaming to High Heaven.

http://www.mayoclinic.com/health/central-sleep-apnea/DS00995

Tia I will pray for you to find help Immediately. Do anything you have to to get it.

May God hold you and yours in the palm of His hand
K. Nana of 5

Central sleep apnea occurs when the signal to breath does not reach where it is supposed to so your baby does not try to breath. You need to either go to another doctor or another hospital. They should at least give you suggestions on treatments for this. The fact that they are doing nothing and telling you nothing is very fustrating and you deserve better care. The fact that it is affecting your child during the day is enough to get something done. You are not crazy and you have every right to be concerned and even angry with the care that you are getting. I am sure they do need to do additional tests to see what is causing the signal to know what treatment is appropriate but they need to do them now and you should not have to wait. Either demand to see another doctor or try taking your child to another hospital. Sometimes doctors have a horrible bedside manner and when it comes to your child you need the best care with an attentive doctor.

RUN, do not walk to another doctor/hospital ASAP! Your baby could die and the doctors you are seeing do not seem to care. I realize that insurance is not accepted everywhere, but your child deserves medical care immediately! I had a similar situation when my twins were babies and both of them nearly died. Fortunately, my doctors and hospital were supportive and they slept with monitors and received top notch care. Good luck and I will pray for you and your son.

Did they test your baby for reflux? Our son was doing the same thing when he was 2 weeks old and we took him to the ER and they tested for reflux. He had a mild/moderate case of it, but it was still bad enough for him to hold his breath because of the pain. He was treated with Zantac and we had to keep him elivated while he slept and after he ate. This did the trick until he was 2 and the apnea issues came back. He would stop breathing in his sleep and jump and wake up crying because he was scared from not breathing. He never seemed rested. I was never rested either because it was so scary for me that I had him sleeping with me and I would wake up everytime he stopped breathing and comfort him and put him back to sleep. I took him to an ear nose and throat specialist and they took this tonsils and adnoids out and the problem stopped. He is now 5 and has no problems at all! I hope this has been of some help. If you would like to...please send me a message and I can try to help more...if needed! I know how you feel and I know how scary it is! I wish the best for you and your baby!
S.

It is always shocking to me how some physicians do not listen to what a parent is telling them about their child. I agree w/the oher moms.... go to another Dr.! You are not crazy, you are a mother who knows something is not right w/your child & not right w/the care he is receiving. You deserve someone who will listen to you so they can get a better understanding of what is going on with your son. I think it is alarming how they brushed off your sons new daytime symptoms or to give you advice to ease his discomfort. You & your son deserve better care.
Good luck!

Do not feel crazy. While I have no knowledge of sleep apnea, I have experience working on medical malpractice cases. I can tell you that many times, sady, even doctors & medical assistants drop the ball and fail to meet the minimal level of adquate care. Most of the time they are in complete denial of their negligence and never admit they've done anything wrong even when it is obvious to the most casual of observers. This arrogance is highlighted in your case as soon as they did noting for a medically recognized diagnosis that surely has treatment. I would not fight with these people, they obviously feel they've done a fabulous job & that you're the one with the problem. Find another doctor & hospital. If they express confusion as to your decision, I'd simply state that they didn't meet your expectations & that you are not interested in begging them to do their jobs. You don't need a shrink, you need peace of mind in the form of action.

My second child was premature she sufferd the same things as an infant, needles to say any time she slept for what I thought was to long I would be wakeing her up. LOTS of test and no reason why. Jump ahead ten years later she started having the same problems again, only this time she is having chest pains along with the shortness of breath.
THe ER suggested a cardiologist--she had a hole in her heart that was never detect along with Mitral Valve Prolaps
(MVP) she's doing great now. Once proper diagnois was given. I would suggest a visit to your local children hospital, insist the check his heart. My daughters was so small they missed everytime she was an infant. You have to be your childs advocate because no one else will.

You didn't say if they sent you home with oxygen and oximeter? unless there is some way to treat an underlying condition, ie seizure, airway obstruction, etc. Oxygen is the only thing that would help until he grows out it. Do they think he will grow out of it??

I'm an RT working in home care now but have seen many odd things, usually these things are out grown. Central apneas are usually caused by prematurity, and brain injury, also odd genetic disorders. prematurity seems to be out. My daughter had a placental stroke and turned blue a lot unrelated to apneas. brain injury or seizure isn't completely out because these are sometimes hard to see on tests they are willing to do with infants. genetic things are unlikely because of the rarety and that it is not constant. Also with illness sometimes it really does take a long time for some kids to recover from.

Have they checked his heart. This is another thing that can cause the turning blue.

I wonder does an apnea monitor go off during these episodes?, or does he just drop his oxygen? I would ask the dr overnight oximetery to check if he needs to bee on oxygen with sleep. Momentary drops in oxygen as well as pausing in breathing would not be completely abnormal but if he drops his oxygen and cannot recover himself this would be a concern. Sorry this is so scattered I'm just typing as things pop into my head.

Good luck, I will pray for you to get some answers.

I would certainly take him to another Dr. Did you take him to Children's Mercy in Kansas City? I know both the South and downtown campus have urgent care units...I would take him in there and DEMAND that he be admitted...at least they can better monitor him throughout the evenings. There is no reason why you should shoulder the burden of this when a hospital is obviously where he needs to be until they have this better under control.

If you don't want to go back to Children's Mercy, then pick another hospital that specializes in sleep apena...get a patient advocate if you need to when you walk through the door...they are called ombudsmen... good luck and let us know what happens.