Talk to me about Melatonin please?

[santastooearlymustdache]

DD is 4.7yrs and definitely has major ASD traits. She sniffs and licks things, she hates noise, she can be socially awkward (almost rude at times) and so on..

Since accepting this and seeking professional help (well on the way to dx, got parental support - lots of positives) things have got easier for us (DH and i) as parents, we have much less conflict with DD and have had to lay back so far we are more than horizontal.

Apart from bed times

This past month have got more and more stressful, trying to get DD up the stairs and into the bathroom is a major conflict at the best of times, 6 days out of 7 end in her shouting and screeching at us, we try not to play 'tag team' but it's the only way we can cope.

The past week she has been waking an hour after falling asleep, and is very fretful - will not be comforted, and this carries on all night. Sleep for about an hour, then fretful and crying until she falls asleep again..and so on

No way is she getting a decent sleep, but is up well before dawn (5.30 - 6am most days) and i certainly know DH, (adult) DS and i aren't!

She is shattered, she's stroppy, she's argumentative and when she's not like this she's almost catatonic. She's unresponsive, verbally, physically and facial expressions go by the wayside.

I know she's finding the whole Christmas thing a lot to deal with - every day starts with a countdown, a counting song/game and the obsessional rituals are becoming so much more important.

A couple of close friends have mentioned Melatonin and how it helps children with ASD to sleep - i've read a little about it and agree it looks like it will help our DD (and us [gulps]) no end, but wondered if anyone could share with me how they went about getting it prescribed?

I have got a telephone appt with our (very good IMO) GP, and am hoping he will agree to this for her, i'll even pay if needs be.

Any tips for me?

Apologies if i don't get back to thread tonight, i can hear her singing and kicking and she's been in bed a half hour already

Hi- After trying everything else we went down the melatonin route a couple of weeks ago.Paed (in our area) can only prescribe it now if the child has had it before

So because we tried everything else and were reluctant to go down this route we have been penalised.

They told me to buy it off a specific website...........

Morning all

GP phoned last night (said he was ahead of his schedule so phoned a day early, lucky him, huh?) and we talked through what was happening in our house at night.

Thanks for the warning about the licensing issue, he says his hands are really tied, but if Paeds will 'script then he can only support that.
He suggested using 'drowsy' meds, such as Medised and Piriton, but since we had to stop using Piriton as a proper antihistamine due to adverse daytime side effects and NO sleep on that either, that's not really an option.

He is going to write to CAMHS again though and support our issues highlighting the fact we have no family support to help us out (GPs are not supportive in occassional overnight stay ) which he says might help in the long term wrt respite

I'm now feeling like the most inadequate parent ever - please tell me this is going to be ok?

Santas, you are most definitely NOT an inadequate parent. Thats me. Just so we're clear about that.

Any one who is dealing with the continuous broken sleep that comes with a child with ASD, especially when they're out of their routine or stressed is going to have wobbles. It doesn't mean your inadequate, just that you have more to deal with than the average and you're doing it on minimal sleep.

{{{{hugs}}}}

Thanks Barf

i needed that hug

it really doesn't help when GrandPs think we're just being too soft and all she needs is telling and possibly a smack

This. Will. Never. Happen.

I know that feeling. I took my DM in with me when we last saw the Paed so the paed could tell her directly that it was ASD as I was getting nowhere. Despite that she still thinks its shit parenting.

I wish it was as I could actually do something about it.

DS is currently licking the door handle to the living room. Please explain how that is caused by poor parenting?

Does it taste the same as ours then

i sometimes think we've got a dog, DD can sneak up behind you and lick any part of skin at any moment!

People don't understand Santa, go with your instinct, you can't smack ASD traits out of a child. My son had a teacher once who tried to bully it out of him, he tried to kill himself. Not good.

Barf, stop wiping chocolate on the door handles! Sorry poor attempt at humour there. I was in CBT for the family and siblings of children with OCD, one mum had socks over every internal door handle, the phone handle, covers on light switches as the child feared germs everywhere and of course because these diagnosis are really just excuses for bad parents and made up names. My son was at that time busy refusing to swallow his own "infected" spittle.

[hugely sarcastic emotion]

(whispers) in the States you can buy melatonin in any health food shop/ drugstore.

I'm not trying to be flippant, and am really uncomfortable with over medicating; we barely use even paracetomol, but (and do your own research) my understanding was that as a hormone, melatonin is a bit different to eg, sleeping pills.

We found that after the initial life changing year; ds2 had never had a nights sleep in his life till his first dose of melatonin at nearly 11, (I know how exhausted and honestly quite mad I felt from sleep deprivation by that point, what on earth must it have been like for him) he now sleeps really well, and we were able to lower the dose till now he often doesn't take it at all, Im not any kind of expert, but have heard anecdotally that it's not uncommon for the body to start producing melatonin normally after it's been given some help.

And he was so happy and relieved to be able to sleep 'and now I have lovely sleep and dreams'.

Of course you need to take every decision seriously, but it honestly wa sthe saving of us.

I wouldn't attempt to do so sitandnatter - the way i was parented was far from the way i have parented my other 2 (NT) children and not about to emulate my 'D'Ms now

We don't have any house plants anymore as DD licks random plants, she doesn't do this in anyone elses house as she knows they might be bad for her. She thinks if it's at home, it's 'safe'

I've seen Melatonin online too post - not tempted by it tbh, who knows what's really in it - and yes, after reading up on (the real deal) i understand it to be a hormone, not a drug as such.

Right, am off to enjoy the last day of having no-one else at home with a long relaxing bath, to myself!

Have a good day ya'll

Hey Santa

Hang in there!!! Take all the sound advice offered, but it sounds like you are doing all the right things anyway. I have a DS with ASD and I know - trust me, I know what bedtimes are like. My DS is now 9.5 and goes to bed easily, but it used to be sheer hell. DD is currently being diagnosed for probable ADHD and has just started on melatonin (via paed). It works, but tbh I suspect the other sensory and routine measures are just as crucial iwth an ASD child.

You are not an inadequate parent. Chase up your paed, ask for support from CAMHS (you may need more support than you realise - parenting an ASD child takes a heck of a lot out of you ), and avoid social care (too little specialist knowledge, imho).

Call the National Autistic Society (you don't need a dx to join or use their helpline), and get along to some of their fab training days if you can.

Huge hugs. You are holding the fort in what is, for parents of neurotypical children, an unimaginably stressful situation. It will get better, I promise, but don't underestimate what you are achieving, just in holding it all together.

Take care of yourself

Like you, I found family, even doctors dismissed my complaints re: DS not sleeping. Like he just couldn't find the "off" switch, even when clearly exhausted. I was afraid even to drive on the school run sometimes I was so whacked. Even DH couldn't understand how much I was going round the bend because lack of sleep is invisible, but it affects everything. We could never employ a babysitter, we couldn't stay in hotels or with friends, my older son was really suffering.

Yet when one of our million specialists finally suggested melatonin, I held off filling the prescription for months -- scared. Then GP wouldn't prescribe even though pediatrician wrote. But it's been more than a year now with no side effects or wearing off of sleep improvement. Though DS still wakes several times in night and too early in morning, he and I are both nearly sane now. School teachers (who didn't know we'd started melatonin) immediately noticed he could concentrate better in class. What I'd thought was permanent depression in myself began to lift. Sometimes DH and I even get a few private minutes for a cuddle!

DS (age 9) now gets 2 mL in liquid form every bedtime. In brief that liquid gold has saved my child, my marriage, and my life.