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I need a bit of help, maybe some advice, maybe a large G&T (long post)

(14 Posts)
WhoeverHeardOfAWormskinRug Wed 02-Jan-13 13:30:53

DS1 has Asperger's Syndrome and ADHD. He is 12.

In November, he started taking Strattera (atomoxetine) as very much a last resort to help him concentrate at school. I tormented myself, and worried and researched because I was very apprehensive about giving him medication.

He was alright, but about 3/4 weeks ago started with a low-mood - not being his usual smiley, happy self. I spoke to CAMHS about it, and they said that it was probably a temporary side effect of the medication and that it would wear off if we gave it a few more weeks. (apparently atomoxetine can take up to 12 weeks to start to show differences)

Anyhoo, yesterday he seemed ok - same thing, a little bit down and grumpy.

He was up in his room, playing lego - and he came downstairs in tears carrying his dead hamster in a box. (He had the hamster since August, she was his friend and he absolutely adored her)

He told me that he had found her like that in her bed. She was clearly dead, still warm and soft (so she had not been dead very long at all) she was perfect, no marks, no obvious signs of illness - except a little blood round her mouth.

She smelled a bit of his body spray - and he told me he had been spraying some around his room and was worried he'd poisoned her.

Then he told me that she had fallen inside her cage.

Finally, after a little more probing he told me that he had dropped her onto the floor.

So, I wasn't entirely sure what to do/say - obviously dropping her was an accident so I wasn't going to be cross with a clearly devastated little boy. Except... he didn't seem that devastated He'd only started crying when he saw me.

He then went to his room, and about 5 minutes later my partner went up to speak with him. As he was going into Ds's room - he found DS rocking back and forth on his bed saying "I don't know why I did it" over and over.

He then confessed to my partner that he had killed her, he said he "blanked out" and it was as if he was out of himself watching someone else do it. He was holding her and she nipped him - so he strangled her and threw her on the floor.

My partner brought him down to speak to me. We spoke, and in trying to get to the bottom of why he'd done this - he confessed that over the past few weeks he has been killing insects for fun and that it makes him feel good, and that he has been pulling the tails of our pet cats when they won't let him stroke them.

This is NOT my son. He cries and gets upset if he squishes a spider, he gets upset if any of our aquarium fish die. He is a gentle, sensitive lad - or at least he was.

On reading the info leaflet for his medication, it says that a very rare side-effect can be psychosis and/or extreme behavioural changes. There are also rare cases of suicidal thoughts, which worried me because he started saying he wanted to "hurt" himself.

I don't have an emergency CAMHS contact, so I called NHS direct - explained to them what had happened and that I think that it's a side-effect of the meds. They advised that we go to A&E.

Went to A&E. They managed to speak with a Paediatric Psychologist (or whatever the job title is) who confirmed that it does sound very likely that it has been brought on by the tablets. They advised that we stop them immediately (I didn't know whether we could or not because some tablets have to have a gradual end)

I was also advised to ring our consultant at CAMHS today, which I have done and they haven't called back yet. To be honest, they are a bit useless - they regularly forget to send appointments when they are due, and I have to ring to remind them. (He was due an appointment in December, and when I rang they had forgotten, and had no appointments until the end of January)

My boy is at rock bottom, he is absolutely devastated that he killed his pet... I've never seen him so upset and feeling so terrible. I hurt on his behalf but I can't undo what he has done. Part of me is repulsed and disgusted with what he's done - but I know that I need to be strong to help him. This is NOT about me.

He has begged us for help, and that he feels out of control and scared he'll hurt himself or his siblings (DS2 who is 6, and DD who is 19 months). I'm scared he'll hurt himself. He's never alone with his siblings, so that is less of a worry.

I am at a complete loss. Never had to deal with anything like this before. Does anyone have any advice/experience?

We did have a social worker from the Disabled Children's Team round to do an assessment - but because DS1 doesn't have a "learning" disability they said he isn't eligible for assistance. (They did provide help for DS2 - who has a severe learning disability and Autism but they pretty much closed the file once that was done)

Ineedmorepatience Wed 02-Jan-13 13:40:28

Hi*whoever*, I couldnt read and run but I dont have any advice for you.

What an awful situation to be in I am so sorry your family are having to go through this.

I hope you manage to get an appointment at CAMHS and also that someone with more experience of ADHD and medication comes along.

Good luck

bjkmummy Wed 02-Jan-13 13:41:50

I don't have any real advice as it seems that you have done everything that you can. I would keep chasing camhs. It is good that he has been able to open up to you and talk about. It must be a very upsetting time for you but you have handled it so well x

inappropriatelyemployed Wed 02-Jan-13 13:44:39

How absolutely devastating and awful for you and your boy.

You sound like you have done all the right things and that you need to insist that CAMHS deal with this immediately if you are fearful for your son. Can you get help from your GP? If in any doubt, perhaps you could take him back to the A&E who sound like they responded positively.

I am not sure whether any of that is of any use but I wanted to say that he is very, very lucky to have you as his mum and that you have handled this with a dignity and sensibleness that I am sure I could not have mustered.

I would also try not to panic him - not that you have as you seem to have set the tone really well. Perhaps be factual about what has happened. Reassure him that he has made a mistake but that getting help will help him. 1:1 him for a while if you can.

zzzzz Wed 02-Jan-13 13:46:49

I have to make lunch or my children are going to start fighting with each other.

It's the medication. Dr has said its medication, you have said its totally out of character, it is a known if rare side effect. If he had burst out in hideous hives and puss had oozed all over you, you'd be revolted but not have this reaction.

Pills can do this. Poor boy. How wonderful he was able to tell your Dh about it.

Honk honk.

Ps. Dd's drugs made my gentle dove rage and rage and rage overnight. She once bit my dressing gown shouting "I want to owey (hurt) you" again and again for 10 mins with tears running down her cheeks. She was 2 and loves me.

PolterGoose Wed 02-Jan-13 13:50:28

Message withdrawn at poster's request.

WhoeverHeardOfAWormskinRug Wed 02-Jan-13 14:08:47

Well... I have a brave face on, but when he was in bed asleep last night I went to pieces. Urgh.

I will most certainly be taking him back to A&E if he shows signs of self-harm. Today he is just very low and flat, we're talking it through when he mentions it - and I'm trying to go at his pace. The advice about keeping it factual is great actually - and it'll help both me and him I think.

He's due to go away for a few days to my mum's - she lives on a farm in the middle of nowhere and I think it will do him good. He has been looking forward to it, and I don't think that punishing him by not letting him go would be very constructive. In all honesty, his absolute devastation is punishment enough I think.

Still waiting for CAMHS to call back, I'll chase them at 3pm if I haven't heard back.

Thank you for the replies, it's so easy to feel completely alone sometimes.

madwomanintheattic Wed 02-Jan-13 14:15:43

Why would you punish him?

I assume he has stopped the meds - I imagine that in the next few weeks he will gradually return to 'normal', and you just need to be very factual about the incident, and the medication link. At 12, he can read the leaflet himself, and you can discuss the implications of side effects.

Were camhs your prescribing authority? Or gp? I would be asking if I could discuss other medication options (newer ones) which may not have the same effect on Ds.

My Ds (11 today lol) with ADHD and aspergers traits is on vyvanse.

zzzzz Wed 02-Jan-13 14:20:22

Absolutely not to be punished for. It's hard to understand how drugs can do this, but they can. We are far more chemically motivated than we like to admit. Poor child.

WhoeverHeardOfAWormskinRug Wed 02-Jan-13 15:22:05

Lol, I forgot this isn't aibu - I wouldn't dream of punishing him, that's part of the reason why he's still going to my mum's place... so that he isn't punished. It's something that he couldn't control. Poor boy. sad

It was CAHMS who were the prescribing authority - I've never heard of Vyvanse, is it a stimulant? I am so new to this whole medication thing, and it's pretty daunting!

I do know that he was prescribed Strattera because I didn't think he would cope well with the up and down of the twice a day ritalin - and he would panic at the change in how he felt. He's even said that he wouldn't be able to cope with it.

I have just spoken to a nurse at CAMHS who said they are going to look into whether it was caused by drug or dosage - but to be honest I wouldn't be happy with him going on to even a reduced dosage. It's my understanding that a reduced dosage might not even work to improve the symptoms of the ADHD.

I'm aprehensive about him trying other medication to be honest... but I'm sure that is just a knee-jerk reaction to yesterday's events.

madwomanintheattic Wed 02-Jan-13 19:45:25

It might not be right for him then. - the effects do wear off in around 12 hours, depending on absorption rate.
Poor wee lamb.

mariammama Wed 02-Jan-13 20:05:20

It'll be out of his system quite quickly. Methylphenidate doesn't have to be twice a day up&down. there are sustained release formulations. It sometimes does weird stuff, but it's been around over 40 years and millions of people have taken it, so the side-effects are much better understood than the new meds.

Both diagnoses mean he is emotionally much younger than his official age; so treat him like a 7 or 8 year old. Even if he says it's baby talk and he's nearly a teenager, at one level he really isn't. Tell him that it was just a terrible mistake, that you're the mummy and will keep a close eye on him till he's acting normal again. That you know he's learned his lesson and will never do it again.

And you probably need to arrange a full hamster funeral wink. Remind him that they don't live that long, so hamster mummy and daddy were probably already in hamster heaven and will be looking after his pet there. DS has the same dx (age 9) usually acts/feels around 5 or 6 y old emotionally. He's quite clever at 'talking about' stuff so we can be fooled into treating him as 9, but it usually backfires.

shazian Wed 02-Jan-13 21:34:12

Hi whoever poor you and your poor ds. Love maria suggestion of hamster funeral.

Your poor boy im sure its the medicine, my ds is 11 and was prescribed this he turned crazy. He doesnt communicate, and i was literally sitting on top of him to get him to take it. Initially he seemed ok, after about 2nhalf weeks he turned manic would scream for hours on end just looking at the wall, diving at the wall. hitting his dad, biting and kicking his teacher. So not my ds he is the most placid natured boy normally. Im sure he was hallucinating and def getting strange thoughts/feelings because he turned into another child completely.

I stopped it after 2 days of watching him manic, he was back to his normal self within 24 hours.

After that he went on risperidone which seemed to be best med he ever had, however due to other problems with his legs etc it was causing a dystonia so he had to come off that too.

Hope you get something sorted soon x

WhoeverHeardOfAWormskinRug Thu 03-Jan-13 17:11:12

Thank you all. Today has been better - finally got to speak to his consultant this morning. She has recommended that he still go to my Mum's house, and that a nice break with some one-on-one with his gran might do him some good. I agree there, while he's gone I'm going to rearrange his bedroom so that he isn't constantly reminded by the empty space where the hamster cage was.

The weather has been horrible for a hamster funeral - so we're going to do it over the weekend while he's away, but I'm going to let him buy a plant to put in the ground where she is, so that he has somewhere to go to be near her.

He has seemed a bit better so far today - and even managed a smile and giggle earlier which he doesn't seem to have done for ages.

maria you are bang on there when you say about him being much younger inside than he looks and sounds. He does use such grown up language, and he does come across as being much more mature than he actually is - but in fact he's still a young lad who loves Lego, playing with action figures, teddy bears... Gosh I don't want him to grow up!

So it's an urgent appointment at CAMHS next week and we'll take it from there...

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