Hello I am mother to Grace who is 3 1/2 years old and just recently diagnosis with CSA.  Grace was born at term with a cleft lip.  At 9 months Grace developed seizures and was found to have aquaduct stenosis which was monitored for several months.  At 16 months Grace had her first sleep study which was negative for apnea but did show she was having nocturnal seizures.  Grace's development has been stable but she does suffer from a slight speech delay (could be she is the youngest of four and doesn't need to talk LOL)  4 Months ago we had a repeat sleep study due to her loud snoring.  It showed a combination of OSA and CSA.  We then went to an ENT who removed her tonsils and adnoids.  We then had a follow up study which showed to our disappointment that Grace had CSA and it had actually worsened.  Her RDI (events per hour) where increased and her desaturations had worsened (a 3 min. time period where she was at 84 %).  They told us to speak to the neurologist which we did who said he really had no concerns since her development was normal and increased her seizure meds to see if that would help (She is on Keppra).  He told us to discuss with the peditrician any further concerns.  I called the peds and she told me it is the neurologists concern.  My question is how much do I need to push to have something(anything) done?  My husband has moved Grace back into our bed    I feel like I am being given the run around.  The peds says we could do oxygen or CPAP but I work in the sleep lab and know both would be in vain.  She refuses to give us a home pulse ox or monitor saying they are to much work-She must not know how much work it is to lose sleep worying.  I would like your advice on how I should approach this because in my frustration I feel I have given up on my daughter and want to try again with a new approach.  Are there any tests to request that would help etc?  Sorry this is so long
Thanks in advance
Anne Mother of 4 the last being to busy to think about breathing

Anne,

I know the frustration you are feeling, quite thoroughly.  Here are some thoughts.

1. Don't ever feel like you've given up on your child. Unless you are keeping her in a box and throwing her leftovers, you haven't.

2. Moving her back into your bed is a great idea! Isaac does so much better when he is in our bed, although he doesn't like it and won't unless he has already had a bad episode or two in a night.  Our pulmo and neuro agree, that co-sleeping is probably the only reason Isaac is alive today.

3. When you are co-sleeping, try and keep her facing one of your faces so you are breathing on her. This will help her body to mimic what it feels. Her episodes will probably decrease in severity..

4. If one doc won't help, get a new one. I have fired a few docs already. Why? Because they see Isaac as "normal", but with CSA, and can't decide what to do with him, so they wash their hands of him and leave us be.  Isaac's only consistent doc since 7 weeks old has been his neurologist, whom we adore. We have fired a pulmonologist, a hematologist, a pediatrician and a family doctor.  You are the customer and it is their job to make sure you and your child are as healthy as possible.

5. With desats at 84%, I'd be concerned. Keep fighting. Someone will eventually pay attention. It took us an overnight hospital stay to get insurance to approve a monitor, but they did!

6. Has she been tested for reflux at all? Reflux can sometimes cause and/or aggravate central sleep apnea. I would ask for a pH Probe or a GER scan...Do NOT consent to an Upper GI.  They will show regurgitation, but not reflux. (Which is what my son's problem was, which we didn't know until 2 months later when we did a GER Scan and it showed very minimal amounts of reflux, where the Upper GI showed significant reflux)

I hope this helps you. Feel free to ask as many questions as you like and vent as much as you need...

Where are  you located? Maybe someone can give you recommendations for docs in your area??

Tiffany, mom to a crazy smart 2 year old, who can remember the phonetic sounds to all his letters, but forgets to breathe when he sleeps....

Hi Anne,
I have a question re: your daughters aquaduct stenosis....is the neuro concerned about this?  has he ruled out an accummulation of CSF (that could cause pressure on the brainstem)?

My second question is, are you really sure it's not worth trying the oxygen?  then if it doesn't work, pursue the monitor.  If I were you I would be concerned about the oxygen drop, especially if it happens more than once during a night.  I know a monitor can be reassuring and helpfull (althouogh disruptive w/false alarms )...but it won't increase her oxygen levels...it will only alert you/stimulate your daughter to be sure she is breathing, right?

That said, it seems to me that the person who would be "troubled" w/the oxometer/apnea monitor would be YOU, not the dr. and so she should let you make that decision.  I don't know why anyone would think that a monitor would be more trouble than getting a 3-4 yr old to wear a cpap or O2 cannula.  Did you ask her about that?  I would be sure I had talked w/the dr about this and about why you feel certain the cpap/O2 would not work for your daughter and if she won't listen, go to another ped or neuro,  for a 2nd opinion --- or a pulmonologist.  I know you said the neuro isn't concerned about her development, but was he really not concerned about the oxygen drop?  IIt is so frustrating when drs "pass the buck" to someone else.   I don't really understand what the controversy is...somebody should be willing to try whatever will work w/your daughter.

If you feel certain you are at a brickwall w/both dr. I agree w/Tiffany, that you should keep trying by seeking a 2nd opinoin about treatment.