Please or to access all these features

Add post

Watch this thread

Save thread

Start a new thread

Flip thread

Hide thread

My feed

Active Unanswered threads

Getting started FAQ's

Unanswered threads Acronyms Talk guidelines

Hide shortcut buttons

Talk

SN children

Here are some suggested organisations that offer expert advice on special needs.

Flip

1 2

Original poster

I have no idea what to do :(

40 replies

MissKittyEliza · 08/08/2011 18:31

Ds is 10. Has ASD, OCD and Tourette-style verbal tics/mantra.

He has been twice medicated by his child psychiatrist. Sertraline didn't work. Risperidone took away the verbal tics but also took away his personality. He stopped drawing; wasn't interested in anything. Still found it all but impossible to leave the house and would shuffle about behind me saying in a bewildered voice "mummy, I don't know what to do". It got to the stage where he'd just sit on the sofa staring at the cushions.

Needless to say, I asked his Dr to take him off it.

Now, medication free for the past 10 days and......were back where we began. He's talking to himself, arguing to himself, his verbal tic sequences are getting longer and longer. Can't have a conversation cause every other word out of him is a tic. He's high functioning autism. He tells me it's easier to say the tic rather than attemp to keep it in.

He's a mess. I'm a mess. Psychiatrist away at present and feel reluctant to ask him to try something new.
Anyone have experience/advice?

OP posts:

zzzzz · 08/08/2011 18:54

This reply has been deleted

Message withdrawn at poster's request.

coff33pot · 08/08/2011 18:56

I am sorry but I dont have any children on meds. DS has tics but just eye rolling and the odd high pitch quick scream which happens more under duress.

Can the doctor lower the dose of the tablets? Maybe the doseage was just that bit to strong? Perhaps it is just a case of trial and error with it to just give him enough to take the edge off the ticks only?

Sorry if I am barking up the wrong tree as I havent experience with meds.

Original poster

MissKittyEliza · 08/08/2011 19:01

Thanks both. He was only on a weeny dose anyway cause though ten, he's physically small and skinny.

And exercise is tough....he doesn't leave the house. At all.

OP posts:

coff33pot · 08/08/2011 19:14

ok how about doing a keep fit regime at home? DS loves his big sisters excercise DVD to music, we have a right laugh jumping about! Also indoors he has a pogo stick, hopper balance ball, excercise ball and roller skates. We have races up and down the house. Its chaos but fun for the kids.

Does he like dancing to music? DS is mad on lady gaga at the moment and laughs when I copy her with him. Would it help with a distraction technique?

Toffeefudgecake · 08/08/2011 19:59

I'm so sorry you and your son are having such an awful time. My son (11) has Tourettes and OCD, with ASD tendencies. He has been on 3ml of Prozac for five weeks. We have been lucky in that he didn't suffer any side effects and it is definitely starting to help with his OCD behaviour and anxiety. It has an excellent safety record too. I'm afraid I don't know if it would help tics (DS is reasonably tic free at present - cross fingers), but it might be worth asking about it when the psychiatrist comes back. I know you are reluctant to try any other drugs, but I don't think you should give up just because the first two drugs didn't work. I am so happy with seeing my son relieved from the worst symptoms of OCD/anxiety and I genuinely don't believe anything but medication could have helped him.

Before DS was diagnosed and allowed medication, it was just awful - so I do really, really sympathise. I'm sorry that I can't come up with anything drug free. Is there any way you could ask for an emergency referral to another psychiatrist or another professional at CAMHS? We had to have an emergency referral from the GP back to CAMHS one summer when DS was suffering so badly from OCD that he couldn't move out of one room. We saw someone within a week.

Also, try ringing the Tourettes Action helpline: they may be able to offer useful advice and it might help you to talk to them.

Original poster

MissKittyEliza · 08/08/2011 20:22

Love the sound of the full on Lady Gaga fest......! We do have our crazy moments but at the present time, the conditions are so bad that it'd be like me trying to tickle (one of his favourite things) a child in traction. He simply isn't in a place for diversion. I try but within 20 seconds, he's stopped whatever he's doing to stand in the corner of the kitchen, betrating himself and apologising to "everyone for every single thing".

Toffeefudgecake.....how long did the Prozac take to kick in?

OP posts:

Becaroooo · 08/08/2011 20:23

Do you have a wii or kinect where he can exercise at home in the front room? I know its not ideal but better than nothing. Would he use a trampoline if you have a garden?

Original poster

MissKittyEliza · 08/08/2011 20:37

We have a trampoline. We have wii sport and the balance board thingy. What we don't have is a sibling or friend to do those things with.

We have an autism outreach worker who visits for 2 hrs a week but even he can't get a response, at the moment.

Sorry, don't mean to pour cold water over every suggestion but, that's where we are at the moment.

OP posts:

pinkorkid · 08/08/2011 21:27

Sorry you're having such a hard time at the moment. We also tried risperidone with ds (ASD, some transient tics and severe anxiety with some ocd tendancies) - we found that at higher dose it seemed to exaggerate the ocd and tics so weaned him off it.

One treatment which we accessed via CAMHS which has helped him enormously was cognitive behavioural therapy. It helped him to examine why he behaved in certain ways, how he felt in particular circumstances and whether he could choose to act differently - for example at one point he always used to refuse to leave the house for any reason transferring anxiety about school to anxiety about being seen in any public place. The therapist helped him to break down his thoughts about why he was anxious going to school, what was different about going to school and going to the park, what might help him to cope with intrusive thoughts including relaxation techniques and positive thinking. We were amazed by how he picked up on some of the ideas from the sessions and used them unprompted himself.

It's not a cure-all but it has helped him to emerge from a seemingly self-perpetuating negative behaviour cycle. Before we started the sessions the therapist carried out a cognitive assessment wisc iv which helped her to tailor the sessions to his style of learning - he also has adhd and concentration and auditory processing are big issues so a lot of the prompts were visual and he was given handouts to read rather than just listening and she encouraged to go for a wander round the room if he got too fidgety. Not every child with asd will find it accessible and it may be that 10 is a little young (ds is 13)but it would be worth asking about.

The other thing we find with our ds is that external stresses ramp up the ocd and tic behaviours - are there any outside factors in your control that could be changed to make him less stressed? Changing schools also removed a lot of the external pressures for ds and so had positive impact on his behaviour.

Toffeefudgecake · 08/08/2011 21:34

It's meant to take two to three weeks, but we saw positive changes within 10 days. The medicine is slightly bitter, but my son takes it without complaint every morning (unusual for him not to make a fuss, so I think he is grateful for the fact that it's helping him).

My son is also on the waiting list for CBT, but that's a long way off. The plan is that he will be on Prozac for six to seven months. We are so delighted with the change in him. For instance, he is finally able to go out without being in a panic all the time (like your son, he often wouldn't go out of the house). He suffers from social anxiety, but he even joined in a game of football the other day. We can see his confidence growing.

It sounds as if you need an urgent referral to a professional. The situation sounds intolerable for you and for him.

Original poster

MissKittyEliza · 09/08/2011 11:24

Phoned CAMHS. They're seeing him tomorrow afternoon and I've to ring them if he deteriorates between mow and then.

He's sitting on his been bag with a box of baby wipes as I type this. Laboriously cleaning between his "dirty" fingers. I am not allowed within a two feet circumference of him just incase he accidentally hurts me.

So, we have to get through today.

He does have cbt but it's been discontinued at the moment cause ne can't access it mentally.

OP posts:

Original poster

MissKittyEliza · 09/08/2011 11:26

Sorry for typos. This iPad does what it pleases!

OP posts:

Toffeefudgecake · 09/08/2011 12:21

I'm so glad to hear that you have an appointment so soon, MissKitty. Let us know how it goes.

Original poster

MissKittyEliza · 09/08/2011 12:34

Thanks. Have to say, our CAMHS are excellent.

OP posts:

WetAugust · 09/08/2011 19:33

I took mine (ASD, OCD Anxiety and tics) off Risperdal / Risperidone too, as he too was 'zombie -ish' on it.

He's now on an SSRI and it is taking the edge of his anxiety, OCD and tics.
We were told that sometimes a number of different SSRIs need to be tried before the 'right one' is found.

Best wishes

Original poster

MissKittyEliza · 09/08/2011 22:04

Wetaugust that's interesting. Which med is he taking now?

OP posts:

WetAugust · 09/08/2011 23:22

Fluvoxamine. It started working for him almost immediately. It's a Selective Seratonin Reuptake Inhibitor which means the seratonin stays longer in his bloodstream which appears to dampen the OCD and anxiety.

I never understood why he was given Risperdal which is basically an anti-pychotic - and he was never pyschotic. However Risperdal appears to be the 'drug of choice' for all adolescent MH problems these days. When DS was in hospital it was being prescribed for his fellow patients whose conditions varied from anorexia, self-harming to anxiety. A universasl cure-all which turned DS into a zombie.

Original poster

MissKittyEliza · 10/08/2011 09:11

Thanks WetAugust.

My son is only ten. Have heard success stories with the Fluvoxamine on MN. I mentioned this to his CAMHS Dr who said it can have side effects. Will discuss again this afternoon with the new dr. The Risperdal/Risperidone side effects were horrendous. Zombie describes it beautifully.

OP posts:

Original poster

MissKittyEliza · 10/08/2011 17:12

Hmmmm..... Still have no idea what to do.

Our appointment was cancelled because the dr standing in for the dr who is on holiday was sick. However, before he went off sick, he did call me. His advice was to go back on the Risperidone until his consultant psychiatrist returns next week.. I refused this option because of the side effects. So, alternatively, he said to five the Sertralene, which had also not agreed with him as the dr was "unwilling to prescribe anything different"

I said ok but then this afternoon, called CAMHS back. I explained that I felt I needed to give ds something to take the edge of his anxiety NOW. The Sertralene will Take up to 10 days to kick in.

Ds is now making me stay away from him because if I get too close he may hurt me!! I have to put his food/drink/whatever on the floor two feet in front of him....walk away....and then he can risk picking it up.

Is it me? Is this NOT an urgency?

OP posts:

Toffeefudgecake · 10/08/2011 19:22

No, it's not you, MissKitty. Of course this is urgent. I often felt as if I must be going mad when the professionals didn't 'get' things I described.

It doesn't sound as if the dr managed to offer anything useful at all. You said the Risperidone had the effect of turning your DS into a zombie and the Sertralene didn't work. So I don't see the point of the dr prescribing them to your son again .

What did the person at CAMHS say when you said you needed to give something to your son to take the anxiety off asap? It sounds like a sensible option to help your son cope until the psychiatrist comes back and, hopefully, comes up with some new medication.

If CAMHS can't help, could you see your GP instead and request something to help your son cope until the psychiatrist comes back?

You are not afraid your son will hurt you, are you? It's just his OCD tricking him, poor boy.

Original poster

MissKittyEliza · 10/08/2011 19:32

No, he'd never hurt me....or the cat. But he does self harm.

Awaiting a call tomorrow from CAMHS.

OP posts:

Original poster

MissKittyEliza · 10/08/2011 19:33

Oh, and thanks so much for the reassurance.....thought I was going bonkers/overreacting.

OP posts:

Toffeefudgecake · 10/08/2011 19:56

You are definitely not going bonkers, MissKitty. I hope you get a better result from CAMHS tomorrow.

Toffeefudgecake · 11/08/2011 15:47

How is today going, MissKitty? Have you had the call from CAMHS yet?

Original poster

MissKittyEliza · 11/08/2011 20:12

Yes, Toffee.....had the call. Interestingly, the dr decided to try Fluvoxamine. He said it was my suggestion. I said well, actually "no". It was just that idnheard good things of it. So, got a script for a starter dose of that and ds will start in the morning.

Hope I've done the right thing for him.

Will be "off line" now till Monday so, will update then.

Thanks for the support. Going to have a relax and a

OP posts:

Flip

1 2