Jamie - posted on 11/13/2010 ( 5 moms have responded )
Hi. My 8 week old baby was just diagnosed with tracheo/laryngeal malasia today. Starting at about 3 weeks of age, she started having stridor while eating. Always a noisy, snoring, grunting baby. She also has Gerd and has been on meds for that. We brought her in to the ER for her recurrent "blue spells" she has been having (that nobody seemed concerned about). The ER doc took our concerns and admitted us in. By the way, she is baby #5 for us, with my #4 having Gerd,FTT,possible stroke,G-tube, etc,etc... She had a swallow study that showed penetration, but no aspiration. She maintained her o2 the whole time in (minus 2 episodes of dsat under 86). They tried to dismiss me and tell me it was reflux only. I know reflux, this wasnt reflux. After insisting they investigate this, they sent in ENT. They diagnosd her after a scope with trachea/laryngeal malasia....and reflux (possibly worsening the swelling from aspirating it). They recommended keeping an eye on her respiration rate and blue spells. Taught us CPR. I guess my question is, How common is the choking/cyanosis spells. She literally cant breathe and they said she may be having spasms that is cutting off the airway. When she is eating and after for about 45min (at least) she is breathing way too fast at about 70-80 breaths/min. Her alarms sounded like crazy while we were there. She also has "tugging" in her neck from struggling to pass air. They say she is "compensating" which is why her o2 is fine. None of this seems ok to me. I feel like something more should be done, especially since she is only 2 mos and they say she will get worse before better...probably not for 6 mos. We follow up w/ent in 2 mos. Is she going to get worse with a cold? She already had croup at 2 wks old and had to be on prednisolone and amoxcillan. (no fever, so now we think it's related)....any help, info would be appreciated. Sorry this is so long too :) I type fast when I'm stressed..lol.