Hi - my 5 month old son went limp and blue while my wife was changing him 2 weeks ago (despite being perfectly healthy before that, a full-term baby who has all his immunizations and has met/exceeded every developmental milestone to date).  

Since then we've been in the hospital twice and had every diagnostic test in the book performed (MRI, EKG, echocardiogram, EEG, metabolic workup, blood/stool tests, chest x-ray, tests for viruses, spinal taps, etc.).  Since his first event, he's had about 7 other incidents, all while asleep (unlike the first event), a few at home and a few while in the hospital.

Typically, his apnea monitor blares, he appears bluish, we vigorously wake him and luckily he comes to each time w/o CPR.  Then he returns each time to his normal (strong, healthy, happy) self until the next event occurs.  Also it seems they come in spurts - a few days with no events, then a few within an 8 - 12 hour period.  

I have the sinking feeling he'll be sent home this week with the monitor and yet again no definitive diagnosis.  Anyone heard of such a thing?  Can anyone recommend a good specialist in this area, preferably in the southwestern U.S.?  

Thanks.

Wow, I wish I had some answers for you. You must be so frustrated and so scared.I don't have any suggestions but will be thinking on this one and ask some of my friends who have dealt with complicated medical issues like this. Hang in there.


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Heather-Mom to Hannah(8-hose head) and Logan(4), wife to Paul (also a hose head)

sorry to hear about your son. I know what its like as I had the same with my son and they started at 5mths. They stopped for a year and came back when he was two. They are being attributed to severe reflux. It is silent reflux so he dosent vomiit and thats why the docs took so long to diagnose him. You could check for that? My son was never a great sleeper so  I think thats an indication. Do these altes only happen when he is flat. is so you could try a wedge pillow and see if there is improvement ? ( sold on american reflux charity  website)What happens with my son is the acid comes up hits his respiratory system and thst causes it to shut off.

Good luck and best wishes x