Long NWs, no crying - just trying to sleep, any new eyes very welcome!

[babybarr]

Thank you so much Caitlin.  It is so nice that people are thinking of me, most of the time I feel so alone in all of this as all my friends IRL don't have any even similar issues with their LOs.

He doesn't respond to APOP - unfortunately I've been too strict with him I think!!  When I go into him he just signals he wants to go back to bed  and then carries on.  He wouldn't co sleep either, he's a tummy sleeper and just takes up too much room!!

My only thought has been to give him the meds for a few more nights given we are now back to getting the slightly longer naps, cos most of the days with meds he was doing crappy naps so that probably wasn't helping the overall picture BUT I just don't wanna keep giving him meds at all really. I don't even know if that's a good idea.... I'm just desperate now.  WWYD?

[*Liz*]

Honestly, I don't know  .

What did your GP say about using the meds? How did she think it should be used or could help you? That might sound like a really silly question - but I just can't really understand the logic as it is just a drowsy SE not an actual treatment iyswim? To me it is like saying he is unwell but then not giving the treatment that is needed and giving something different instead. But as you say a GP can't presribe anything else - it would need to be a paediatrician.

Perhaps a trial again whith good naps is sensible as that would do more to try to counteract some of the built up OT - and see if that changes anything at all  .

Do you actually see a paediatrician Laura - or is it just the immunologist and the sleep clinic (which sounds like it is a 'bad habit' sleep shop rather than what we all hoped it would be)?

I think at one time you mentioned videos of what he does? Has a specialist ever seen them and commented on them? Just wondering as when we went though Jacob and his twitching episodes we went through a column of people - GP saw nothing and though we were imagining it - registrar said he could see it but didn't think is was anything - paediatric consultant though they were behavioural but there were a few episodes where his eyes twitched that he couldn't explain. He then took my computer off to show to a paediatric neurologist who looked and said that it was clearly myoclonus. So what I am saying is that the generalist had NO idea, and the specialist knew straight away what it was - and then J had the proper tests to make sure it was a benign form.

I guess you have been through something similar with the diagnosis of immunodeficiency though  .

I know your LO is as AP immune as mine is - a blessing and a curse at times, hey?

What about a second 3 day trial of meds, and if not cut the nap down to 45 mins or so?

I must say I've been doing some 'routine tweaking' over here and am finding that J's pm A is so so so much shorter than I thought it was - especially now the am A is 6-6.5hrs. Looks like 4.5hrs or less really. But, I guess routine wise, you have really tried it all?

((hugs)) and thinking of you. Hope I'm not making things worse - just trying to 'think outside the box' as best as I can to see if I can think if ANYTHING. But struggling really  .

[londonmama]

If your doctor didn't say anything about not giving meds too many days in a row, I would personally try to build on the better naps with a few more better nights on the meds.  But I can totally understand your being hesitant in giving too much medicine.

[babybarr]

What did your GP say about using the meds? How did she think it should be used or could help you?

I think because she couldn't prescribe anything "proper" that suggesting the OTC option may just help stop him getting even more OT.

Do you actually see a paediatrician Laura - or is it just the immunologist and the sleep clinic

Our immunologist is a paed but doesn't doesn't get involved in the sleep - I guess it's not his remit.  The sleep clinic - like you say - seem to just be a bad habit clinic, although it was a paed that looked at our videos.

I didn't realise Jacob had his own fair share of issues - how is he now?
We went through SO much just to get someone to take me seriously when DS was small.  I kept getting fobbed off and was made to feel like I just had PPD (I didn't - I had a sick baby!)

We had a nap of 1.5hrs today after a bad night and an A time of about 6.5ish hrs.  He went to sleep 4.5hrs after he woke from nap.  I guess depending on what happens tonight will depend on what I do.  I feel I can't try no naps without him at least having a relatively good night but then again maybe it won't matter!  I have to say I remember when he was small and slept through he was always an awful napper, when he started napping better he did start sleeping worse at night (although nothing like now and he'd been through an awful lot by that point so I blamed that too!)

thinking of you. Hope I'm not making things worse

I cannot tell you how much I appreciate you listening to me and taking the time to come up with different things.  You are most definitely not making things worse but really helping me out.  Thank you   

[Roseii]

So sorry no advice but following along, hoping you eventually solve this, and thinking of you

[grace annes mommy]

I just wanted to tell you our routine, just for some thought about A times and naps.  My DD has always had lower sleep needs/high A times.  Our routine right now, more or less (she's never very 'regular') is

Wake 6:45
nap 12:45 (set time regardless of wake time) Lately she's been napping 2hrs MAX.Usually more like 1.5.
Bed 7:15/7:30 - I put her down 5 hrs after her nap, she either is asleep immediately or takes up to 30mins.

I only wanted to share with you, bc my DD is a couple months younger than your DS.  And as you can see, she's already doing 6hrs A in the morning, and anywhere from 4hr45 to 5hr30 in the evening.  So these are high A times for sure.  She does average herself out at about 13 hrs total sleep.

I guess I'm saying, if he copes ok, it wouldn't be unheard of to have those long A times.  I know this doesnt' solve anything for you... I really do hope you start to get things sorted soon.

[babybarr]

Thanks Caitlin for that. 

DS napped for 1hr 20mins today which is better than normal.  So obviously the later nap time has helped.
We are sort of doing this (obviously the nights are still a bit crazy and so i can't really count them!)
6.15ish wake
1pm nap - 1-1.5hrs
Bed 6.30pm - I have been offering this bedtime still as it's always been his preferred sleep time and if he's OT I want him to catch up, however the last few days it's been 7pm before he sleeps and that's fine - I'll play it a little by ear.

I'm have decided to give meds if he wakes for the next few days and with better naps hopefully that'll get him caught up - how long will be enough do you think for months and months of OT??  Then I'm seriously hoping he'll start sleeping properly at night.  If this doesn't happen then maybe the no nap is an option?

[MummyToBen]

Hugs....this must be SO hard that this is going on for so long (((((((())))))))

Does he normally wake at similar times in the night?  I can't remember if you've already said this, but could you try giving the meds to him a couple of hours before he would normally wake (i.e. give it to him in his sleep), in the hope that this would then prevent him from waking?  Sorry if you've already tried this - you are doing so amazingly and I'm sure you've probably thought of/tried everything!!! 

xxxxxxx

[babybarr]

Thanks Claire, his waking varies each night, sometimes as early as 10.30pm and sometimes as late as 3am.  He wouldn't take the meds in his sleep - he sleeps so lightly and plus he doesn't much care for the taste!  I just have to try and get up quickly when I hear him - otherwise within a minute I'm asleep again!

[babybarr]

Last night I didn't get up to him....
He did wake though and was signing and saying book over and over    I wouldn't mind but this isn't something new - he's been doing it ages!
Anyway I fell back to sleep and so have NO idea what he did!!

He napped 1.20hrs yesterday incidentally, 1-2.20pm asleep at 7pm woke around 6ish (I think) obviously discounting any NWs!  I however woke with a raging sore throat at 5.45am!

[grace annes mommy]

Laura, I bet you're exhausted! I hope you can rest a bit today and take care of yourself.

[*Liz*]

((hugs)) and hope you feel better soon 

Does your DS have a night light at all?

[babybarr]

He doesn't have a night light and I'm kinda loathed to give him one as I *think* it'll probably make matters worse!

I'm just praying he won't get my bug otherwise it's yet another trip to the hospital and another step backwards in the whole routine.  Fed up really probably not helped by feeling poorly I guess.

[*Liz*]

No I wouldn't think it is a good idea either - I've just stook J's behind a cupboard so he can *just* see enough to find his lost lovies in the night but no more  .

Fingers crossed he doesn't get ill 

[grace annes mommy]

Get well and stay well vibes for you two.