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

[babybarr]

So with a little bit of encouragement I am posting again in the hope that we can get DS to finally have a restful nights sleep!

Bit of history
He has a rare immune deficieny and has been in and out of hospital a lot and this will have without doubt affected his sleep patterns and also his SA, he has been traumatised by hospital and has had to have many many blood tests.
He had reflux although I have just weaned him completely from his meds
He has cows milk intolerance although at some point I hope to introduce dairy - he is on soya milk (one sippy in morning and one in evening)
He was referred to the sleep clinic who have said that he doesn't have a "sleep disorder" and he'll grow out of his nighttime antics!

His routine is roughly -
Wake 6.15am (regardless usually of multiple NWs)
Milk 6.45am ish
Bfast 8
Snack 11ish
Nap 11.45 (this usually lasts around 1hr or so I have tried earlier and later times to get a longer nap but with out a lot of luck)
Dinner 4.30-5ish
Bedtime milk 6ish
Bed asleep by 6.30pm

He has a bath every other night but this makes no diffrerence to whether he sleeps well or not.

So the problem is... he can spend up to 4hours at night awake.  He isn't crying he's just desperately trying to get to sleep is like insomnia.  He will chat for a bit but not play and then lie himself back down again and repeat this continuously.  Eventually he'll fall back to sleep at some point!  These "episodes" can happen anytime at night although 11pm ish is very common currently.  However he'll go through phases as to what time it may be.  Nothing encourages him to go back to sleep - i.e. me giving him a cuddle, a drink, meds, me sitting with him.  Invariably this has no effect and if I do into to him he just asks to go back to bed!  He is generally very happy by nature and keeps himself calm at night but I just know he is not getting enough sleep and wish desperately I could do something to help. 

I'm sure he is OT but he will not nap more than once despite my best attempts at APOP.  Bringing his nap forward only led to still shorter naps and an even longer A time before bed.  He's always been a bad napper and the only time I got relatively good naps was when he was on 2 naps at fixed times. 

FYI this has been going on for months! 

Sorry for the essay!  Any thoughts appreciated. 

[londonmama]

Laura, it might be helpful if you wrote a list of the things you have tried beyond routine tweaking, just so we don't suggest them all over again.  E.g., osteopathy, night light, leaving his door open, white noise, etc., etc., etc.  Would that be too much trouble?

Sorry this is still happening!

[babybarr]

Absolutely fine and probably a good idea....
Well I've just ordered some herbal children's insomnia remedy (hadn't before cos I wanted to hear what the sleep clinic said)
He doesn't have a night light - he struggles to sleep in any light
He doesn't have white noise - used to as a tiny baby and Anna has suggested trying it again to block out other noise
I've tried stopping his reflux meds
I've tried cutting out various foods
I've tried less milk / more milk at bed
I've taken him out of a grobag and into to a walk in sleeper so he doesn't get tangled
He's just gone into a BBB to give him more room - he loves it BTW, but hasn't helped
He's not too hot or cold - and has a thermostatic radiator which turns on when it gets too chilly

The thing is he goes to sleep SO well and I don't need to go into him in the night.  It's like when he wakes he can't "unwind" enough to just turn over and go straight back to sleep.  He goes down for naps with no fuss too, just doesn't sleep very long.

If I think of anything else shout!  Don't be offended though if you suggest something that I have tried though - cos as you can imagine I have tried so many different things it's untrue!

[louis-mummy]

I'm also sorry that this is still ongoing, i can't recall how old he is now?

a random thought, is there a possibility that he thinks he is still on 2 naps?? so he's waking up after albeit a random amount of sleep time but a good 4 hours which may have been his 'a' time when on 2 naps? did he have these same nw's when on 2 naps anyway?

how does he seem at 6.30pm - really tired? does he go straight to sleep?

have you tried a later routine for a good week or so?

just throwing some ideas out there......

[MummyToBen]

Huge hugs.....

Ok, so I'm just throwing out a really crazy idea that would probably be at the bottom of the list of what I would try if I was in your shoes  ...but have you thought about TOTALLY changing everything for a couple of days and then start back at square one and re-work your routine.  By totally changing everything, I am kind of thinking of what would happen if you took a long haul flight or something like that, and it would *throw* everything completely out.  But, in your case, I was just wondering if that might almost be a good thing ( ) and then you could start again.  Of course then there is the potential for OT, but I'm guessing he couldn't probably be much more OT than he is now?

Anyway, feel free to ignore 

xxx

[*Becky*]

Yes the only thing I could suggest would be to do something TOTALLY different. Seeing as all the sensible stuff you are already doing is not working then it might be worth a try.

Have you tried a later nap...quite a bit later??? Do you think he may need a long A time first thing? I am sure you have tried this but just throwing it out there. Would also mean a later bedtime I guess which may be worth a try.

Hugs - it must be so so tough for you.
bx

[londonmama]

I was going to suggest something similar to Claire.  Sometimes a major shake up of routine causes chaos, but at least breaks the rut and might enable you to start afresh.  

But I can't help but thinking this just seems like more than a routine issue, after so many months.  If you don't mind me asking about the meds your LO is on - the Septrin?  I am absolutely NO expert on this, but there is quite a bit of information out there about side effects of Septrin, and insomnia could be one of them?  Like here:  http://briandeer.com/bactrim-septra.htm

Obviously if your LO has a condition that requires this medicine, then there is nothing you can do; side effects or not, he needs it.  But could you have a conversation with your GP just to make sure there are no alternative meds that he may react to better?

The other thing I noticed about Septrin is that it can be linked to folate deficiency?  Folate deficiency is definitely linked to insomnia.  One of the links about Septrin talks about “administration of folinic acid (5 to 10 mg/day) without interfering with the antibacterial activity” of the drug” to combat this deficiency.  http://www.epgonline.org/viewdrug.cfm/drugId/DR001888/language/LG0001/drugName/SEPTRIN-Forte-Tablets-

Could be worth talking to your GP just to see if this is true and if folic acid/folinic acid supplements might help your LO to sleep better?  Or maybe they have already tried this.

May be way off with this, but from my personal experience sometimes GPs just don't make these links without a bit of prompting!

[MummyToBen]

I think that's great advice - it does seem that it's gone on for too long to *only* be about routine, and worth talking to your gp I should think.  xx

[babybarr]

Ok firstly thank you for ALL your suggestions...

We had a very long day/night at the hospital just before new year which completely and utterly threw our routine out the window we left there ar 3am after a rough day with barely any sleep and he slept in till 9am the next morning, the next day was obviously completely out of whack too.  I have to say I thought that this may have solved our problem myself and an enforced routine change may have worked BUT yes you guessed it - nothing!!  We also did the much later nap thing as well - forced really by the things we'd been doing - with no luck either.  I have completely thought these things may have helped! 

Londonmama - sorry I don't remember your name - Yes DS is on Septrin.  I was aware that insomnia was a SA but didn't realise the whole folate acid link and I didn't realise that was linked to sleep,  I know of someone else's LO who was on septrin for a similar condition and he was given folic acid to take (I think anyway) - I'll contact her.  I am going to see the GP next week although last time I saw her she was less than sympathetic and told me to buy earplugs so I could sleep   I will definitely look at those links - thank you

it does seem that it's gone on for too long to *only* be about routine

This is how I feel, I *know* he is probably OT and bad naps because of it and the vicious circle that goes with it (other than no crying / upset with it) but I feel like there is more to this.

Laura - he goes out like a light at 6.30pm and for naps - I mean within 5 mins (he'll probably play me up tonight now I've said that )  He very rarely will wake before 11pm either.
He's 20mths today!  He had very restless nights on 2 naps with long NWs but where he's so much older they "look" different althought I'm not sure they are iyswim?!

[MummyToBen]

I am going to see the GP next week although last time I saw her she was less than sympathetic and told me to buy earplugs so I could sleep

Don't mean to sound out of line, but it might be time to try another GP - that is really poor that she said that to you  .

xx

[*Becky*]

Totally agree with Claire. That is just not on!

[anna*]

I was also wondering about trying an alternative therapy. Vicku had AMAZING, transformative success with acupuncture for her reflux baby. I have no idea how an acupuncturist would work with a toddler... but it's an idea? My dear friend had great results with acupuncture for her (adult) insomnia. It wears off after about 2.5 years and she goes back for a few more sessions.

[babybarr]

Thank you for the suggestion Anna but I can no way put him through any more needles.     I know they're not "real" needles but to him they'll be the same.  Sure you'll understand, he's completely needle / hospital / all professional people who look like doctor phobic. 

My GP has been lovely all the way through until our last appointment. I don't know if she was having a bad day or just didn't know what to say    I'm going to see what she says this week and will change if necessary after that.

[anna*]

Maybe homeopathy? Cranial osteopathy?

[babybarr]

He had cranial osteopathy when he was tiny with no results - although have considered giving it another go.  It'll just be hard to get him to let anyone to touch him - he'll think they're doing something nasty.  We have trouble just getting him weighed and even changed in a changing cubicle cos he assumes he'll have to have blood taken.

I've just ordered a homeopathy remedy...