melatonin miracle!

[Phlebas]

(not sure how long it will last but I'm grateful for one night's sleep).

paed prescribed ds melatonin yesterday. I gave him 1ml on a teaspoon with nutella at 6:45, at 7:30 he took himself to bed & at 7:45 told me it was time to sleep, he was asleep by 7:50. he woke up at 8am.

That's only the third time in his life he has slept through - usual routine is 2.5-3 hours to get him to sleep (never asleep before 10:30pm) then 2-3 wakings/night. I went to bed at 9:30!

I'm truly amazed!

Whoop whoop!!!

Huray! :)

Melatonin is wonderful. My DS was prescribed it aged around 4. Has had it every night since then (he's now 13. It really has made a huge difference to all our lives. :-)

:)

Did you manage to sleep all night as well or were you waking ready for him every few hours? I was like that for a few weeks when DS2 started on melatonin.

I'm so knackered I slept through (didn't even hear dh get up with dd2 at midnight) until 3am when I woke up & had a complete panic that he was dead (just like you do when a newborn finally starts sleeping) - checked he was okay then slept until 6!

that is brilliant
I heart melatonin

You lucky parents!!!! I am so jealous wish it would work on my son!!!!! After 17 years, it is just pure luck if he sleeps through!!

Sleep - it's better than all the other stimulants put together - alcohol, chocolate, caffeine. A good nights sleep can really put the oomph back. congratulations [bsmile]

Its great stuff! Ds(3.9) was prescribed it about 6 mths ago and I think I have finally caught up on my sleep :). We were at a family party on Sat night and got home really late and Dh decided that wee man was so tired we could do without the "sleepy-bye" medicine for one night - BIG mistake - awake and running round the house every 45 mins! Won't be making that mistake again :o

Hi Phlebas
So glad it worked for you and you got some much needed sleep.
I know when our old Paediatrician said to me once 'how's the sleep going?' I asked what's that then? Is that the word that comes between 'you've got a hope in hell of having some' and 'not a chance matey'?!
My eldest was offered it about 2 yrs ago, in fact is on repeat script for it. Have about 10 bottles now cos it don't flipping work! Must get around to cancelling it.
Makes him go off to sleep but 2 hrs later...bang, he's awake having his little conversations with himself (which are hilariously funny BTW)
Funny how it works for some children but not others.

I wish it worked for everyone :( It is strange though - the paed said she'd recently started prescribing the extended release version but that they hadn't had such good results with it.

DS was asleep at 7:30 the last two nights & slept through straight for 12 hours. I'm not sure whether the wakefulness is behavioural (habit) or something physiological - paed suggested we have a go at stopping it after 6 weeks & if it was a habit he may carry on sleeping well without it.

I feel completely wrung out now - I've been non functional today - I don't want to get too excited in case it stops working. But I haven't slept more than 2 hour spells since the night before he was born.

course the next challenge is to sort out the poo issues - withholding/constipation/overflow - don't think it will be as easy to get movicol into him

Oh then the food phobias, and the puking, and the falling over etc etc etc

Still, sleep is good; very, very good.

phlebas
So pleased for you very jealous too.
How we could do with some sleep our dd is 4.9 and has never slept I did ask pead last time we went but he said he didnt think it would work on dd as she goes to bed ok and sleeps till about 2am but then will be awake for hours talking to herself or trying to jump of our bed. I am going to ask again now!

Oh we have the constipation FOOD PHOBIAS and the falling over and hardly any speech etc.
Im sure some sleep would help us cope a bit more with the other things.

I love these kind of posts as I know others are having same problems we do

Hi phlebus
Can I ask how old your little one is?
Only asking cos I know with my youngest we had all the stuff you mentioned above such as projectile vomiting (managed to hit my cooker hood once from 7 feet away and he was only 2.5, and I was forever finding puke between the CDs in the rack under the telly!)) but he has grown out of a lot of this.
Plus the falling over isn't so bad. he has flat vision (doesn't see in 3D) so like a table would look flat and he'd go flying over it etc, but he seems to have managed to control that to a degree...Still very nervy coming down stairs/slopes and has to hold on to someone or something but before he would've just fallen.
He's 12 now.
Maybe your little one will grow out of some stuff too.

I'm jealous

We wanted to discuss melatonin at our last apt but the paed reg dismissed it as his sleep wasn't 'too bad'.

He takes 3 hours to get to sleep and wakes 2-10 times a night. Bad enough for us !

sayjay - that's pretty much what my ds is was like :( When I saw the paed I said I had ten issues I wanted to discuss #2 was sleep & before I'd got to the end of the spiel she asked if I wanted melatonin. It might be worth keeping a sleep diary & then trying the paed again?

DS is 4.3 - he doing v. well in may ways :) We've mainly been focusing on speech & social stuff so need to do some catch up with more medical issues; it's hard to address everything at once. The main problem is his diet - very restricted with lots of food phobias (which is where the puking comes from which in turn leads to more poo issues. We're working with a behaviourist but it is microscopically slow progress.

He's dyspraxic and we've been fighting for an OT referral for a year now (finally got it!) - we do what we can at home & in his ABA but we need more specialist guidance (no money for private unfortunately). His balance has really improved, he can kick a ball, jump & land without falling etc but is still immature with many gross motor skills (crossing midline particularly).

I like to hear from people who are further down the line than us :) I'm always interested in how older children are doing.

sayjay just saw that you spoke to a reg - ime it is far easier to get consultants to prescribe than more junior staff. We always ask to see the consultant now, they tend to be more proactive.

Thanks phlebas will make sure we do see consultant from now on. Actually I really liked the consultant, but she was off sick at our last visit. We're not scheduled to return for about 5 months (I think . . . ) I may have to wriggle back in sooner - your success has given me renewed determination :)

Hi Phlebus
Thanks for that. I am quite sure you will see so many improvements over the years with your little one. My boys are now 12 n comin up 14 and the difference now to when they were your boys age is astronomical. If someone had said to me then they would be doing this this and this by the time they're such an age I would've looked disbelievingly at them (but with a little hope!)
My eldest seems to have progressed most, his speech is clearer, less cluttered or palilalic, he seems more independent, is capable of so many things I never though possible.
Never mind being able to put his own shoes on, he always puts them on the correct feet! When he was younger I thought he would never be able to put his own shoes on even!
I know it saounds like small things but the difference it makes to our lives his huge; now I can say get dressed babe, and he will (correctly too!) whereas before i'd be chasing him around trying to pin him down and force a tee shirt ove rhis head while he wriggled and squirmed and created merry hell!
He can hold a pen quite well and copy letters, even reads a bit- which is amazing as some rotten geneticist once told me that FXS children never learn to read or write (I'd love to shove that back in his sanctimonious pompous face)
He can play computer games, do basic sums, all sorts now but I never thought I'd see that day a few yrs ago!
:)