20-Month Old Surgery? Yay or Nay?!

[PurpleRayne89]

Brought my son to GP for possible sleep apnea. Doesn’t sleep, pauses in breathing (more like periodic breathing as it’s been since birth), messy sleeper, tossing and thrashing about. GP referred to ENT.

ENT checked adenoids, said they’re normal. Nasal test normal. Checked tonsils, said they’re moderately big. I asked whether there’s evidence if sleep apnea. She said she’s not sure and referred to his tonsils being moderately big. She offered to put him on the list for surgery in the coming months. I asked whether this would result in better sleep, stop the pauses in breathing etc. she said she doesn’t know. She said sleep apnea is usually present from 1 years onwards. My son has had this issue since birth. She said usually with pauses in breathing there’s a reason behind it.

my friends daughter was tested for this condition with a sleep study which then confirmed the diagnosis and she subsequently had surgery.

should I push for a sleep study? Why have surgery for something when it isn’t confirmed! AIBU?

Bump

If it were me I would probably try to have the sleep study. That should give you more information, especially about things like whether there are truly pauses in breathing. Once I had the results of the sleep study, I would discuss with the doctor regarding how important it is to have the surgery (i.e. is this sleep apnea, is it life-threatening, etc.), and whether the surgery is likely to correct the problem. I would try to get as much information as possible, read up on it, etc, and then see how it looks from there.

@aloris Thank you

Could it be silent reflux?

@Tigofigo what led you to suggest that? Just curious.

My 8 month old will be having surgery for sleep apnea in a few weeks.
In our case we saw a paediatric ENT consultant and showed him videos of our son's apnea episodes, he also observed the apnea as our son was asleep during the appointment. He looked at adenoids and tonsils which were enlarged.
We were given nasal steroid drops and an antibiotic regime to follow before we went down the Surgical route.
As it happens neither medication had an effect for us but it was worth a go. Are you able to speak to your Dr about this?
FYI we are being seen by a sleep apnea specialist at The Evelina who mentioned that they give advice to other hospitals over the phone. This might be worth suggesting too.
For us the surgery is a no brainer, but our son's case is quite severe.

@Nannylp hello. Funny enough we are at the Evlina too. It’s odd how they’ve approached out cases differently. My friend, also treated at this hospital was given a sleep study to complete and then her daughter was sent for surgery. I’m going to discuss my concerns with them. I don’t think their reasons are enough for surgery.

I think in our case it was very obvious what the problem was, we had also had previous hospital admissions where the apnea was observed so I think it would have been a bit pointless doing a sleep study.
I am surprised that they're so quick to jump to surgery in your LO's case. It's definitely worth a discussion, what are the indications for surgery? Are there other medication treatments that you could try? You could ask if they think a sleep study would be appropriate. Interestingly another poster mentioned silent reflux causing similar symptoms, i recently learned that the son of a friend of ours had apnea episodes caused by silent reflux.
I hope you get some answers. Are you booked in for surgery or will you see the consultant beforehand?

Very similar here with my ds from birth, massive tonsils, loud snoring, we did the sleep study over a few nights and they found him within the normal so didn't go ahead with surgery, he's grown out of it now, he's 6

@Nannylp the indications for surgery was moderately sized tonsils. That’s about it. His adenoids are of normal size. I asked whether surgery would fix the episodes of paused breathing, she said potentially but it’s difficult to say. I described it more as ongoing periodic breathing. However, no doctors ever know what I mean by this. It’s been ongoing since birth. He’s booked for surgery. I will be contacting the secretary for further discussion. I don’t think I’ll be so quick to have him operated on at this stage. Your friend who has episodes caused by silent reflux, were the pauses since birth and similar to periodic breathing?

@BakerLea thanks for your input. I’m happy things corrected themselves. It’s weird we weren’t even offered a sleep study or anything really. Just straight away offered surgery to see whether or not it corrected the pauses in breathing.

Hi my 10 month old is doing this, has done pretty much since birth but getting worse.
Has episodes whilst asleep like shes been sobbing and is double breathing trying to catch her breath, it can last up to 2 hrs before she settles again. Shes an awful sleeper thrashes cries and restless.
Drs say they arnt worried but this doesn't reassure me at all, i have 5 children and never dealt with this before so it cant just be "ok" surely?

@EmilyTipper hey, does she also have periodic breathing? I know the double breathing, my son doesn’t do this anymore since he’s turned two. So I wouldn’t worry too much. Especially if doctors have reassured you. However, you’re her mother and you know best.

the periodic breathing hasn’t gone away. He still has pauses. It’s supposed to stop around 6 months. 2 years on, here we are …

I would want sleep study and a second opinion.

My daughter has just gone through ent for this. They said no surgery as although apnea was expected sleep study said no apnea so they are just monitoring her tonsils and palette size expecting her to grow out of it. Daughter has very large tonsils and small palette so I don't think they have given you a good enough reason for surgery.

@Universalsnail hey, this was a while back. I’ve refused surgery. I don’t feel enough was given to support the decision for surgery. I don’t think there should be doing surgeries just because. Even when I asked whether it would help relieve symptoms. She responded she wasn’t sure. Not good enough and it was a resounding No.