human
Thank you for replying!I tried to address some of those things in my post. It sounds like I wasnt clear, so Ill try again.Ive been told by 2 different doctors that he no longer has an oxygen requirement, however the initial doctor who began the oxygen wants to keep him on it until the scopes.Baby is not failure to thrive. He was born less than 1 percentile due to IUGR. He is currently in the 7 percentile. He has been growing and gaining weight consistently along his curve. Weve seen GI and several nutritionists and feeding specialists (the specialists here see in co-managing groups) and everyone is very happy with how he is feeding and how he is gaining.He does not have, and has not had, any feeding issues. No tiring during feeds. No sweating. No desats during feeds. He has a bit of reflux, which GI said is normal and needs no treatment.There is no noisy breathing when agitated. He is not noisy during sleep.The impression Ive gotten is that laryngomalacia is being looked at as a possibility due to apnea. I also understand that typically oxygen drops during these events, and his did not. I think I was seeking some opinion on this in my post, though I wasnt clear. Can apnea be the only symptom of laryngomalacia requiring treatment?I absolutely think the scopes are necessary. Im totally on board with looking. I think this is why Im feeling challenged in giving blanket consent to cutting going in, though. To me, based on the research Ive done, it doesnt sound like he has other symptoms of laryngomalacia.I was hoping I might get additional insight here, and perhaps even find other pathways to research and explore. I appreciate you taking time to respond!
gpt
Generally laryngomalacia is associated principally with noisy breathing and feeding difficulties. It is possible to have severe enough laryngomalacia that the loss of tone is resulting in the apneas/cessations of breathing, this would be called sleep-dependent laryngomalacia which is becoming increasingly recognized in the last few years.The true fact of the matter is there is a 5 month old with severe sleep apnea who is working on growing. Sleep apnea has significant impact on children and can impair development.It is also unclear if a scope examination has been done while the baby is awake (through the nose) to see if there is any evidence of laryngomalacia as this can often be apparent at bedside as well. The caveat to this would be sleep dependent laryngomalacia wouldn't be (because baby isn't asleep)When I was at a children's hospital and worked with some people that did blanket consents like that, it didn't always mean that the surgery would be performed, only if there were findings concerning enough to warrant the intervention. You have the option to talk to the surgeon and ask they call you before performing the procedure or discussing what they find. I've done that with plenty of folks. That being said, a supraglottoplasty is very well tolerated overall and those kids do tend to do much better.
ENT surgeons - would you do pediatric supraglottoplasty and/or remove adenoids?My baby is almost 5 months old, scheduled next week for endoscopy & bronchoscopy - the ent surgeon wants blanket consent going in for supraglottoplasty and removal of adenoids if indicated.On sleep study around 2.5 months ago, baby had a significant number of hypopneas (approx 27 times per hour) and 5 apneas (total) without a decline in O2 sats for either. Oxygen and carbon dioxide levels remained stable/good throughout duration of study. (Baby was not on supplemental oxygen during the study.)Baby has no noisy breathing, no feeding concerns (weight has gone from < 1 percentile at birth to currently 7th percentile) and is hitting all developmental milestones.Baby was IUGR, born at 5.5 lbs at 38 weeks. Released from hospital on day 3. Baby had trouble holding o2 sats at 2 weeks old, and was put on oxygen. Has remained on .5 liter since. A pulmonologist and the ENT doing the procedures both said the baby could come off of oxygen based on the sleep study, however the pulmonologist who initiated oxygen treatment in the hospital wants to continue until after the procedure.Since the study, baby is sometimes off of oxygen during the day and o2 levels hold stable. I also see significantly less startle during sleep. In my opinion, his condition is improving, and if I understand correctly a high number of babies outgrow apnea and laryngomalacia (what theyre looking for, not currently diagnosed).Looking for outside thoughts on this before deciding how to proceed.
There's not enough information to definitively say what the correct course is, and we can't look at any further evaluation that has been done. Your child has severe sleep apnea based on the reported AHI, has an oxygen requirement, and by definition had failure to thrive while being <5th percentile for weight. One thing not commented on in this post at all is how feeding has been going, if there is tiring during feeding, desaturations during feeding, and how noisy the baby is when agitated and how noisy when sleeping. These can also all point to whether laryngomalacia is a potential cause.These all indicate at the very least that an evaluation of the airway is necessary, and it is reasonable if there are significant issues to correct those issues and minimize the need for further procedures.