Melatonin for ASD, was it difficult to get on prescription for your child?

(33 Posts)
xxlostxx Tue 06-Oct-20 00:07:05

Dd (age 11) was diagnosed finally with autism a few months ago. Night times are terrible a lot of the time, it has always been like this and I'm burnt out. All the anxieties come out, worry about school next day and no matter how patient I am it regularly ends in a prolonged meltdown. Her brother is 2 years older, his sleep is often disturbed and he then in turn gets pissed off and frustrated with the situation which doesnt help, it is so shit and exhausting sad

I have ordered from Biovea in the past, give it to dd a few times a week, when I can predict high anxiety times and it works great. Problem now is I have been waiting 5 weeks (delay due to Covid they say) for delivery from US and it's not looking like I'll get it any time soon! I've had a neighbour knock tonight to ask if the noise could be kept down. Dd was mid meltdown, asking her to stop doesnt make it happen! This situation is not unusual, had the police out in the past when someone called them and folk knocking to see if all ok at all hours due to the noise coming from the house. It's just too much.

Anyway, what I'm asking is, for those of you who have melatonin on prescription for your dcs, was it difficult to get. I am envisioning them wanting a 6 month sleep diary and such things and we are at rock bottom here. Discharged from camhs now so my understanding is I need to ask GP for a paediatrician referral? Any advice would be greatly received, thanks

OP’s posts: |
danni0509 Tue 06-Oct-20 11:53:27

Hi. Sorry you are having sleep troubles with your dd flowers

Ds has had melatonin since 5 (they didn’t like to prescribe before this age) he’s nearly 7 now and it’s on repeat, I just phone his consultants secretary when we are on our last bottle and she gets a new prescription sent to hospital pharmacy for us to collect.

It wasn’t difficult to get it, I just said his sleep is shocking and that was that, we have had the same consultant since ds was 2 so I’d regularly told them.

If you have no consultant or anything involved I would book an appointment with your gp and ask to be referred to the relevant department.

Could you telephone cahms and explain the situation and see what they suggest? I know you said you have been discharged but maybe they can help.

Do you give dd magnesium liquid?

openupmyeagereyes Tue 06-Oct-20 14:07:05

It wasn’t difficult for us either though we asked at his follow up paed appointment 6 months after his diagnosis as his sleep had deteriorated massively.

In our area it can be prescribed by the GP but only on the Paed’s recommendation.

Mumofsend Fri 09-Oct-20 10:16:00

In our area it is a nightmare. It has to be through the sleep clinic. To get a referral to the sleep clinic you have to evidence how much work you have done with various professionals. The referral wait times are huge

Its bonkers

xxlostxx Wed 14-Oct-20 16:50:07

Thanks for your replies everyone and sorry I'm late getting back. Got gp phone appointment for next week and will ask to be referred then.
Mumofsend I do think they will want evidence of sleep diary and I'll have to jump through lots of hoops to get it. It's strange how it can vary so much by area.
danni it's just orange flavoured liquid melatonin I get from Biovea, lowest dose of 1mg per pipette and dd needs no more than 2mg.
I am relieved that it has finally arrived yesterday in the post, thought it was lost and never gonna arrive.

Although it's not illegal (from my understanding) to have been buying and giving dd this myself, unprescribed, I feel uneasy telling gp that I have been giving her it now and again and what a difference to her life (and our family) it makes.
Do you think it would be unwise for me to mention it?

OP’s posts: |
Sallyt7110 Sun 18-Oct-20 09:03:43

My son was diagnosed with asd at 5 and it took about 6 months from me asking his pead about melatonin to get it. First discussion was about making sure I was doing everything I could with sleep hygiene/bedtime routine etc even though everything she recommended I was already doing, weighted blanket, bubble lamp(for the noise) etc, second time I rang she played the it might be because of lockdown card, so made me wait till he’d been at school a few weeks to see if it settled and now we finally have a prescription from his pead who wrote to gp to get them to take over the prescription. Works like an absolute dream! Son seems a lot calmer and less irritable.
Hope your appointment goes well.

Sallyt7110 Sun 18-Oct-20 09:04:15

Son is now nearly 7

BuffyTheBuffetSlayer Sat 31-Oct-20 21:21:10

My DD is being assessed for ASD. She used to be a great sleeper but over the last 4 months she has regressed and can be up many times through the night. Her paediatrician said she doesnt prescribe melatonin unless there is also a neurological disorder sad So no hope for us. We are in scotland.

Your situation sounds so difficult and exhausting, I really hope you get the help you need flowers

BusterGonad Mon 02-Nov-20 06:55:10

I've just bought some melatonin for my 12 yo. It helps a lot but isn't a miracle. I'm not in the UK so easily purchased. May I ask how many mg I should be giving him? They are 5mg gummies and so far I've been giving him half (2.5mg).

EnglishRose1320 Mon 02-Nov-20 07:02:30

Glad to hear you have got the melatonin and I would recommend a referral to a paediatrician to hopefully get a more regular supply.
One thing I will say is that melatonin was a short term fix for my ds, also diagnosed at 11, anxiety was the main underlying factor for him and until he got help and medication for that the bedtime meltdowns did carry on increasing and the police visits turned into trips to hospital under police escort.
Sorry I'm not saying this to scare you, but if someone had told me years ago to push for more support and bang on cahms door until they listened I think it would have helped. Its definitely a case of needing to sort the root problem and not just the symptoms. Or at least in my ds' case it was, that may not be the case for your dd, just wanted you to be aware.

Sallyt7110 Mon 02-Nov-20 09:35:34

The dosage recommend from my sons pead was 2mg for the first week which was one tablet per night then up it to two tablets(4mg) per night if it hadn’t made a difference after a week.

openupmyeagereyes Mon 02-Nov-20 10:44:01

Our tablets (which were slow release) were 2mg also but we weren’t told to increase if it didn’t work, which it didn’t. Our issue is very early waking, we generally don’t have issues settling him to sleep.

BusterGonad Mon 02-Nov-20 13:36:10

My son doesn't go to sleep with the tablet but when I lay with him he falls to sleep quicker and generally stays a sleep longer, I'm just wondering if 5mg is okay for a small 12 yo?

Jackparlabane Mon 02-Nov-20 13:47:09

My 9yo was recently prescribed 2mg a night and it's made an enormous difference - will snuggle down after bedtime story and go to sleep rather than either playing on tablet for hours or having violent fearful meltdown.

First referred to ASD clinic about 2 years ago, has had paed assessment, Camhs referal a year ago, sleep clinic referral, then urgent Camhs re-referral and us and GP and school chasing all round back in May. Sleep consultant then agreed to prescribe if things didn't improve after 3 weeks of school. They didn't, but now have.

Still waiting for the formal ASD diagnosis...

Sallyt7110 Mon 02-Nov-20 16:24:33

Buster, i would think 5mg would be fine for a 12yo if I was told up to 4mg for my very slight 6y.o. Glad it seems to be working for yousmile

BusterGonad Mon 02-Nov-20 16:45:57

Thank you Sally, tonight I did 2.5mg again as I'm anxious to go for 5mg. He was still awake when I went to bed (3 hours after taking it) but nodded off quickly when I sat with him. Tomorrow I'll go for 5mg in the hope he'll settle himself to sleep.

Sallyt7110 Mon 02-Nov-20 19:40:08

Let me know how it goes, if you’re anxious for the 5mg you could always do 3/4 of the gummie if it’s not too tricky to cut it that way?!

ShakeaHettyFeather Tue 03-Nov-20 08:19:14

My 13yo takes 2mg still, has done for about 3 years now. It stopped him wetting the bed, too. I'd be reluctant to up the dose without medical input.

DarkMintChocolate Tue 03-Nov-20 09:30:57

DD is an adult. Normally she lives in a specialist centre with an on-site medical centre, but she has been home since March. I I was talking to the resident GP at her care home, about the fact she was getting up at 4.30 am - which we found exhausting. She told me to buy melatonin and give her 2 mg a night. (DD is on a complicated regime of prescriptions, and normally no GP will prescribe her anything else, except paracetamol or antibiotics)

BusterGonad Thu 05-Nov-20 21:20:16

The night before last I gave my son 5mg, he was very very tired but once again he didn't get himself to sleep, but after sitting with him for 10 minutes he was asleep. Last night 5mg, 3 hours later still awake and asking for a bed time story, then took about 10 minutes to sleep, then woke up at 1.30am. Not so successful but he does have a dripping aircon unit (can't get fixed due to f**King covid) which is quite loud, the drops into the bucket.

Sallyt7110 Thu 05-Nov-20 22:49:48

That’s a shame the 5mg didn’t work, have you tried playing white noise through an app or something to drown out the dripping? Also keeping sugar below national guidelines helps my son although it is a pain counting everything and there seems to be so much sugar in everything!

BusterGonad Fri 06-Nov-20 00:49:39

I would say that it was a success, he's never been a child that goes to sleep willingly. It's a vast improvement than before.

Sallyt7110 Fri 06-Nov-20 06:27:49

Well that’s good news then, glad it’s made an impact. Good luck with everything.

BusterGonad Fri 06-Nov-20 07:13:05

Many thanks Sally, not the miracle I was hoping for but a huge improvement. I was so anxious to use melatonin but I'm glad I did.

boobybum Fri 06-Nov-20 08:28:57

Just to say that we had more success with giving our DS a smaller dose that prescribed. We were initially told to use 3mg which we didn’t feel was working well so they upped the dose to 5mg but still wasn’t doing what we hoped. I read somewhere that actually very small doses can be more beneficial so we dropped down to between 0.5 - 1mg and this has worked better for us.

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