Central sleep apnoea in baby

[SusannaS82]

Hi everyone,

I would really appreciate any information from parents going through anything similar. My son is now 7 weeks old and has been diagnosed with central sleep apnoeas, more frequent than what would be expected in babies and associated with longer desaturations. He also has significant silent reflux on antireflux meds and carobel thickener.

After 4 weeks in hospital during the covid madness he is now on oxygen at home for when he sleeps (as it greatly reduces his apnoeas). He is due to have another sleep study at some point.

We have been told it could be a maturation issue of his respiratory centre and something he could grow out of. They will also do an outpatient brain MRI to rule out any structural brain issues, although with covid 19 we don’t know how long that might take. His genetic bloods are normal and they have ruled out CCHS.

We are very worried about what could be causing his apnoeas and how long it might take to outgrow the need for oxygen when he sleeps.

Does anyone have any similar experiences and how did the central apnoeas progress? We are under GOSH. Thanks so much in advance.

Hi there, OP,

Gosh, sounds like you've been through the mill! Congratulations on the birth of your son, though!

We just wanted to bump this for you in hopes someone who knows more is around at the moment.

Thank you @HebeMumsnet, any info would be really appreciated.

Sympathies OP as this must be a really challenging and worrying time, and especially hard to contend with when isolated from family and friends.

Just some thoughts that have occurred to me whilst reading this, and I apologise if they are a bit jumbled....

• I know your son was not premature but did the doctors at GOSH trial caffeine on him at any stage to see if it would help with his apnoeas?
• Again I am sure GOSH will have considered this very early on in his stay, but did they fully explore the potential link between his apnoeas and his reflux (in some cases reflux can trigger the vasovagal response and cause apnoeas and this is not always related to the apparent severity of the reflux)?

• Has your son had a ph study (a probe would have been passed nasogastrically to measure the acidity from his tummy and up through his oesophagus. This usually stays in place for 48 hours)? If so was it performed simultaneously to a sleep study?
• is your son on the highest doses for his weight for his reflux medications?

Sorry if that sounds like I am barking questions at you. Really hope that you have a supportive partner at home with you and you are receiving good community neonatal support from GOSH.

Hi @Puddlelane123, thank you for your message and kind words- indeed it’s been super hard and the isolation doesn’t help :(

In response to your questions (all spot on btw and def things I have queried with them myself)

• they said they wouldn’t try caffeine because he’s not prem (I asked for it..)

-I asked if reflux could explain the apnoeas.. apparently the apnoeas are specifically limited to the REM stage of sleep and he doesn’t have them when in deep sleep. They didn’t seem to think reflux would be enough to explain them. -He did have a ph study which confirmed acid reflux. Unfortunately it was not during the sleep study.. he has an impedance study pending as O/P. -He is on the max dose of lansoprazole for weight (I keep adjusting it!)

To us it seems like reflux could be contributing to/causing the abdominal breathing and apnoeas, however it has been presented to us as a sleep related entity all together.. I am curious to hear if anyone has been diagnosed with a ‘maturation of resp centre issue’ and what the progression was.

Thanks so much again!

Hello, I hope your little one is doing much better and no longer requires the oxygen. I was wondering if you ever got to the bottom of this? My little boy is 7 months old, suffered terribly with silent reflux and has been having oxygen desaturations for around six weeks. He’s had all sorts of tests and we are still no closer to finding a cause or solution☹️

Hi there and Happy New Year!

Sorry to hear your son is having such a difficult time. It must be very stressful feeling like you’re not getting to the bottom of things. We certainly had that type of stress at the time. Reassuring to hear you’ve done most tests.

Our little guy is now 4 years old and thankfully no longer has breathing issues. He ended up needing home oxygen for 3 months and his desaturations and apnoeas resolved. We never got a clear answer other than his respiratory brain centre needed more time to mature and sometimes this happens with babies.

Silent reflux probably had something to do with it too. He was on dairy free milk, all antireflux meds etc- the thing that helped the most with his silent reflux 100% was carobel thickener for his milk. When he weaned onto solids that helped reflux immensely too. We only managed to completely stop Carobel for liquids just after he was 1 year old. He hasn’t had any reflux issues since.

If most tests for your son have come back negative hopefully as he continues to grow things can improve. Hope the specialist team you are under help figure it out and that you have support.

Hope this is helpful- all the very best!

Hi, thank you for sharing your story. I can relate to everything you have said. My son is now 7 months old but at 7 weeks was admitted with difficulty breathing and found to have severe central sleep apnea. He has a normal brain MRI, normal genetics, normal scope of his airway amongst many other tests all of which were normal. He potentially has silent reflux and is on maximum reflux medications but has been denied a PH study. He was initially started on caffeine which stopped working after a month and had been on home oxygen since 4 months old. We are awaiting a reply sleep study but his oxygen still drops every night (on home saturation monitor) so I feel like he will be on oxygen for a while. The doctors seem to hope he will grow out of it and hearing stories like yours make me hopeful so I just wanted to share mine.