Infant Sleep Apnea in a 7 month old -- a warning of SIDS?

[sylvia]

Hi!

I desperately need your help!  

We have a now 7 month old full-term baby girl who has been on an apnea monitor since she was about 2 weeks old (when we noticed that she went long periods of time without breathing).  Since then she has had numerous apnea alarms, 1 sleep study, and one hospital stay with extensive work up.  Unfortunately, the only results we are getting is that some reflux was detected when she was about 2 months old but it was unclear if that was a cause or even involved in her apnea spells.

So far, the only response from doctors we are getting is that she is “probably” going to be ok, or that she will “probably” grow out of it (whatever “it” is).  We were prepared to take her off her monitor by the end of this month, but after 40 days of silence, her monitor went off again last night.  I am so scared that her apnea spells could lead to SIDS were we to take her off the monitor.

We need help!!  Is there some study, research, something (anything) being done where I can take her for examination to find out what the problem is, where it may be located, and possibly find some form of treatment?  I do not dare take her off the monitor now, but for how long can I keep her on it (before the insurance quits paying on it)?  Please help!  We do have insurance.  There has been no family history of SIDS on either side.  We are doing everything by the book (no smoking, no comforters in her crib, no going to sleep on her tummy, etc.)

Please help!!  Thanks, Sylvia.

[Kevin Kennedy, Ph.D.]

Dear Sylvia,

I understand your cautious approach and concern. Any parent would be worried in your situation.

This is nt an area in which I am versed, but I will do some 'homework' and try to deliver some guidance for you. I will first consult with our pediatrician and see if she has some information for you.

[char]

dose your baby snore .have enlarged tonsils or adnoids been ruled out.

[sylvia]

To:  HVMA Ph.D. - KDK
Thank you so much, I will wait for your answer.

To:  char
She does not snore, but the other two -- I don't know.  I will call her doctor tomorrow and see if this is something they checked.  Can you tell me why you are asking?  Thanks!

[HVM M.D. - EV]

Dear Sylvia -
   I am sorry you are having such a scare with your baby. With regard to her risk for SIDS and where you might go from here - I would advise you to seek another evaluation with a Pediatric Neurologist who specializes in SIDS.  I am not knowledgeable enough to counsel you on a course of action now.  I know that in the Boston area - there are experts in SIDS at both Mass General Hospital and Children's Hospital who might be better able to answer your questions.  Perhaps in your geographic area there is a children's hospital, or other referral center, that could reassure you as to what to do and for how long. And - you might want to repeat the sleep study to make sure there are no ongoing abnormalities.
   With regard to the recent alarm going off - was this a true apneic spell?  As you probably know, you can have false alarms. I think if this last spell were real - that might influence your course of action.  I would not remove the monitor until your questions are answered satisfactorily and you feel reassured that your child will be all right. As your baby gets older - the risk for SIDS decreases.   So time should be on your side.  I would proceed cautiously.
    Hope this helps.   Dr. EV

[char]

the only reason i ask is when my son was 2 he used to to snore and would have periods of 8-14 seconds when he was'nt breathing in his sleep.
this turned out to be sleep apnea caused by enlarged adnoids and tonsils  obstructing his airway during sleep(the name my dr called it was obstructive sleep diorder) he had the tonsils and adnoids were removed and the problem  was solved . i hope you get an answer on what is causeing your baby problem soon has i know how you worry more when you dont know what is causing something
best of luck
char

[sylvia]

Thank you both for answering.  Just one more question (actually, two):

1.  Does the sleep study HAVE to be done in a hosptial or can it be done at home?  Also, they wanted to test for reflux with a PH probe; I was just wondering, is reflux a constant occurance or is it a hit or miss situation where they may or may not catch it, depending if she has a problem at that time?

2.  Assuming that it is not reflux causing her to stop breathing (and I doubt it is), and assuming it is not enlarged tonsils or adnoids, what other tests could be run and would a pediatric neurologist be the person to see or is there something else her PCP should do, another test they could run, before we see the neurlogist?