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Ds with asd and high anxiety- diazapam having no effect.

(24 Posts)
EnglishRose1320 Sun 03-Dec-17 21:32:14

Ds1 who is 12 has become a school refuser and is suffering massively from aniexty. He is self harming and having massive meltdowns that can last for upwards of 5 hours. Last night the on call gp came out at half 1 to prescribe diazapam for the first time. He was already calming a little and the combination of the lateness and the medication meant that he was asleep about an hour later.
However this evening he had another meltdown and we managed to get him to take the medicine earlier. It has clearly worked a little in that he has stopped headbutting the walls but he is distraught because he says it hasn't worked and he still feels really angry and seems really agitated.
I am completely exhausted, covered in bruises from his outbursts and don't know what to do next.
Any suggestions would be greatly appreciated thanks

Cakescakescakes Sun 03-Dec-17 21:39:16

Hi there. I don’t have any suggestions but wanted to offer you some sympathy. My DS with ASD is only 7 but his anxiety has really rocketed over the past few months and he wants me to ‘fix his head’ as he says. He is smaller than me at the minute so I can still stop him from hurting me or his brother when he melts down but I know there will be a time soon when I can’t. It’s just so tough - just wanted to let you know that you’re not alone.

GreenTulips Sun 03-Dec-17 21:41:21

Same here! No help available either as doing well in school

EnglishRose1320 Sun 03-Dec-17 21:41:23

Thanks for replying cakes, yeah it's only recently that I have struggled to stop him hurting himself and others. Feel hopeless a lot of the time at the moment. Like your DS he wants me to make it all better and I hate the fact that I can't.

EnglishRose1320 Sun 03-Dec-17 21:43:00

Green tulips, it was the same with DS in primary, he did a cracking job of masking so no help available. Now he has started secondary and is displaying aniexty in school and refusing to go in he has been referred for various things but the wait time is up to a year for some of the services

Cakescakescakes Sun 03-Dec-17 21:45:01

My son gets really distraught afterwards too and remorseful for hitting me etc. I hate this myth that kids with ASD are emotionless robots. My poor poor DS feels everything so very very intensely and he just can’t cope with it all. It’s so hard to feel helpless isn’t it?

user1471456357 Sun 03-Dec-17 21:50:08

I have found propranolol really good for anxiety, much better than other anxiolytics.

Thornrose Sun 03-Dec-17 21:52:21

My daughter actually had an opposite reaction to diazepam which is quite common with children with ASD. We found that promethazine worked well.

EnglishRose1320 Sun 03-Dec-17 21:59:43

Hi anger is definitely building sad haven't had more than a few hours sleep for days.
Thanks for the suggestions of other medications, will hopefully be able to look at options when he finally gets a CAHMS appointment, atm emergency go can only give diazapam.

Holliewantstobehot Sun 03-Dec-17 22:02:47

I wanted to say my heart goes out to you. DS(14) was having violent meltdowns daily for about two years. He still has terrible anxiety and I think he has depression too but the violence has stopped. He hasn't left the house in five weeks. The years he was being violent were literally soul destroying. He used to self harm after as he was so upset he had been violent.

I agree that his ASD doesn't stop his emotions, in fact he's a lot more emotional than his sister. We watched an old planet earth on Netflix this afternoon and he was crying because the polar bear was dying.

Have you a camhs referral? They did two courses of CBT with my DS. They weren't sure whether it would work because of his ASD but they gave him their top therapist who had a lot of experience with ASD and it at least stopped the violence. We are now looking at antidepressants.

Also try getting a referral for a family support worker. Mine is brilliant, so supportive mostly just gives advice on who to contact etc. The school SEN team are a bit scared of her which helps!grin In fact a lot of what's been or is being put in place for DS is thanks to her.

PippaPiper Sun 03-Dec-17 22:03:23

You can buy Phenergen at the chemist (brand name for promethazine), it helps my ASD dd.
Sorry you're going through this and I hope you get some help soon, it's bloody exhausting sadflowers

Holliewantstobehot Sun 03-Dec-17 22:08:01

Just saw you are waiting on camhs. We were waiting ages too but I took DS to A and E one night when he was very bad and I think the doctor phoned camhs and pushed things through. They have a special psych ward for kids (although ds wasn't admitted) and the doctors push camhs for urgent help if you have to stay there. I don't know whether you could do that but if your son was very bad you would at least get some help.

EnglishRose1320 Sun 03-Dec-17 23:03:17

Hollie- he ended up in a&e about three weeks ago and that's the reason he has actually been put on the CAHMS waiting list this time rather than being rejected. However I think the waiting list is still as long as a piece of string.
He is still awake atm, isn't as angry anymore thankfully but seems really manic, I am struggling to keep my eyes open and have run out of ideas to try and calm him.

GreenTulips Sun 03-Dec-17 23:10:29

HAve you tried vitamin D ?

Can't fatham out the dosage but help DD while she took them, now refuses

EnglishRose1320 Sun 03-Dec-17 23:16:10

No we haven't, will look into it, happy to give anything that might work a try.

GreenTulips Sun 03-Dec-17 23:47:07

I've been reading about lack of vitamin D in relation to behaviour in kids, I might try the drops to see if they can be added to a drink or something! Let me know if you find anything

EnglishRose1320 Mon 04-Dec-17 21:03:52

Another evening of meltdowns and panic attacks, this evening we weren't even at home when they started, has just taken nearly 5 hours to calm him enough to get him home and now he is escalating again

Holliewantstobehot Mon 04-Dec-17 22:51:07

So sorry you're going through this. You probably have tried a sensory approach but things that worked for Ds: ice to crunch on, chilled gel pack to put on his head, fans, drive in the car with the radio on to drown out any noises and the window open for a cool breeze, no talking at all as his brain was so overloaded he couldn't take anything in. (Obviously only going in the car if it was safe enough to drive)

To be fair these things were usually offered when he was calming down as he couldn't engage mid meltdown. He still sleeps with the fan on in his room for the white noise and the breeze. As you can see he likes cold! He does get too hot very easily and we joke he could live on a research centre in the arctic when he's older.

I also found that giving him a drink and snack post meltdown helped as he would use so much energy with all the adrenaline. Low blood sugar triggers him off sometimes.

I hope camhs come through for you soon. If he doesn't have melatonin perhaps ask for some. Ds has responded well to it although we have the occasional night he doesn't sleep its a lot less than it used to be.

GreenTulips Mon 04-Dec-17 23:09:08

Have you asked him what he thinks would help?

Sounds daft but he may have an answer

Whywonttheyletmeusemyusername Mon 04-Dec-17 23:18:19

I didn't want to read and run. My dc is suffering from severe anxiety as well. I have no words of advice for you, but wanted you to know you are not alone x

EnglishRose1320 Tue 05-Dec-17 09:00:06

Thanks for all the replies. He calmed down eventually last night, we had hours of non talking though when he was semi calm. I find the non talking really exhausting, he wants to tell me something but can't so he tries to draw a picture and gets frustrated if I don't know what it means.
On the massive plus side he was so anxious last night and due to the fact it's a daily Cahms have said they need to see him by the end of this year!

Fintons Tue 05-Dec-17 09:22:19

Just ask the doctor?

Off the top of my head, Propanalol or sedating antihistamines?

EnglishRose1320 Wed 06-Dec-17 00:34:10

A gp can't prescribe anything else to a child, hence waiting for cahms.
Have clearly already spoken to a gp

cansu Fri 22-Dec-17 13:22:18

My ds has asd and suffers terribly with anxiety and aggression, variable moods. He is taking a medicine called Risperidone and it makes a massive difference to him. You may need to see a psychiatrist though who is a bit open minded. Some are v unwilling to prescribe for asd.

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