Would like to communicate with other parents of infants with central apnea.  My son has central apnea.  He has had severe periodic breathing since he was born - last sleep study showed periodic breathing 65 %  of his sleeping time.  We just started trying to get him accustomed to bipap-- this has been an incredible challenge. He was just admitted to hospital with influenza -- doctor said he needed to get on bipap or get a trach because hus co2 levels were high & had desats in 80s. Stayed in hospital for almost 2 weeks until he got better and started tolerating the bipap during the night.  He is now 5 1/2 months old.  Doctors have not yet identified reason for his sleep apnea.  He has had numerous tests and is still considered a mystery. Tests have included spinal tap, MRI, EEG, echo of heart, genetic tests, blood work. He has reflux. He also has a heart murmur but echo showed everything is fine.
This my first child so i feel rather alone dealing with the issues and would like to chat with other parents who have child with similar condition.  Thanks, Tanya

Hi and welcome!
I know exactly what you are going through.  My son is 7 1/2 months old and was diagnosed with CSA.  I, too, still have more questions than answers.  He started turning blue shortly after bringing him home from the hospital.  An overnight pulse ox study (done at home) showed his oxygen sats in the 70's.  He finally had a sleep study done at the hospital at 2 months of age.  It showed significant apnea and periodic breathing.  He was put on 1/8L of oxygen.  He also was a very noisy breather, so he had an ENT consult.  The ENT diagnosed him with mild laryngomalacia (floppy airway).  We were told very nonchalantly by the ENT and pediatric pulmonologist that there was nothing to worry about and that he would "Grow out of it."  His second sleep study at 6 1/2 months of age  showed improvement in the periodic breathing, but still showed some central apnea with desaturations to the 80's.  His CO2 levels on the first sleep study were OK.  The probe wasn't working during the second one, so I don't know what his levels were that time.

 Last week, he had an appointment with the pulmonologist and she thought that we should take him  off the oxygen. She wasn't concerned with the apneas or the desats. She said "Well, we all have some apnea when we sleep."  She didn't really answer me regarding how many apneas are acceptable.  Every night since my son has been on room air, he sets off his desat alarm on his monitor several times a night.  I will probably have to start the process of seeking a second opinion, because while it certainly is more convenient to have him off the oxygen, I am not convinced that he is ready to be off of it.  The frustrating part is that is takes 2-3 months to get in to see any specialist.  Oh, yeah he also has a murmur and his ECHO and EKG were normal.  In all other ways Casey is a very happy, developmentally normal baby.

Forgive me, but I have lots of questions for you!
 1. When did all of this start before or after the flu? Were the sleep studies before or after?
 2. How high were his CO2 levels?
 3. When he desated to the 80's did he recover or did he just hang out in the 80's?
 4. Why bi-pap?  Would nasal cannual o2 be sufficient?  I can't imagine what a nightmare it is to keep bi-pap on a 5 month old!
 5. Which part of the country do  you live in?  We are in Denver and the pulmonologist said the altitude could be affecting my son.
 6. Was he born at term? Pregnancy complications?

Sorry for all of the questions!  I look forward to hearing back from you.  You are not alone!  
Kim (Mom to Casey- perfect in every way, except he forgets to breathe!)

Malsmom, i would be good to ask the cardiologist about the removal of the oxygen; if you are given extra oxygen, more than what is needed you can hyperinflated the lungs, which is not good at all, that might be the reason why the pulmonologist decided to stop the supplement of oxygen; due to the murmur and the sleep apnea, the levels of oxygen in your baby are decreased; it would be advisable to have a second opinnion or to make a round table of doctors, sleep doctor, pulmonologist, cardiologist altogether to see if they are really focusing on all the diseases that your child has.