Talk

Advanced search

Central sleep apnoea in baby

(5 Posts)

MNHQ have commented on this thread.

SusannaS82 Sat 25-Apr-20 14:21:35

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.

OP’s posts: |
HebeMumsnet (MNHQ) Fri 01-May-20 21:46:10

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.

SusannaS82 Fri 08-May-20 01:56:04

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

OP’s posts: |
Puddlelane123 Fri 08-May-20 04:57:24

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.

SusannaS82 Fri 08-May-20 08:04:52

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

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!

OP’s posts: |

Join the discussion

Registering is free, quick, and means you can join in the discussion, watch threads, get discounts, win prizes and lots more.

Get started »