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Kathryn

Desperate - please help

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Hi everyone,

 

We are struggling with a dilemma and don't know what to do. My 15 year old daughter has been prescribed risperidone to get her to the point where she can benefit from other kinds of therapy, and ultimately rejoin the world. At the moment she is completely withdrawn, does not leave the house, or speak and apart from playing her x box game is completely dependent - I am even having to dress her at the moment. She has so many meltdowns and the triggers for those are increasing all the time.

 

She has refused to take it even though she has been on other medication. She knows that Risperidone is an antipsychotic and she says it will kill her. I think she must have come across some horror story on the internet in the past. I have talked to her about it, told her it's a really low dose, asked her to try it for a short time and see how it goes, but she won't budge.

 

We are at our wits end - I don't like drugs but we have reached the point where it is the only thing that will stabilise her; I trust the autism specialist who recommended it having seen it have a dramatic improvement in similar situations. I would slip it into her orange juice without her knowing - I know that's a breach of trust but what's the alternative? She is fast becoming unmanageable and it may deteriorate to the point where she needs hospitalisation - horrible thought. :o

 

So what's worse, medication against her will or without her knowledge? Or do we abandon the Risperidone altogether and look for something else- what?? I am so weary of trying to cope all these months without any effective treatment for her. But in her current state of high anxiety she wouldn't let anyone else near her to do any therapy anyway.

 

And without treatment - won't the LEA just love it? They can say her problems are medical not educational and refuse to do anything.

 

Sorry to go on - my mind's in turmoil at the moment. :crying:

 

What do others think? :(

 

K

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Hi Kathryn,

 

Sending lots of >:D<<'> >:D<<'> >:D<<'> to you.

 

Gosh, what a decision to have to make. The way you described how your daughter is at the moment, i think ANY help will benefit her. You are her mother and you know her better than anyone.

 

I give my son medication without him knowing and i DO feel really guilty about it. But, he is too young to be able to make a choice for himself. I know it's for his own good.

 

It's very difficult for you, because your daughter is old enough to have an opinion. Ultimately though, YOU are the adult.

You can't really force her to take it, so putting it in her drink is your only option.

 

I think you have to weigh up these two main points;

1) your daughter's reaction if she found out you'd given her the medication without her knowing

2) the possible benefits the medication may have for her

 

I'm not sure if there are any legal implications to giving someone medication without them knowing? Maybe not because she is still a minor. Hopefully someone else may be able to provide you with this information.

 

Good Luck, i am thinking of you,

 

Loulou x

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Beverley,

 

My heart goes out to you and your daughter. >:D<<'> >:D<<'>

 

I wish I could think of some pearl of wisdom that would help you with your decision, but I'm afraid I can't. Having been in a similar situation, I understand how painful this can be.

 

You really are between a rock and a hard place. If you give your daughter this medication without her permission she may never forgive you. People with AS hate to be lied to and detest deceit. Is it possible to get the some evidence that will persuade her that this drug is safe and may be beneficial to her.

 

I hope you manage to work something out. :pray:

 

Nellie >:D<<'>

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Hi Kathryn,

 

It's a difficult dilemma because you want the best for your daughter but she does not agree with taking the medication. If you hide it in orange juice she might notice the different taste and react with anger which in turn might make the situation more difficult for you as a Mum. In your case, I think I would give the doctor a ring (GP or consultant who prescribed it) and explain the situation. Personally I think that I would ask the doctor to speak to her and persuade her about taking the medication explaining that antipsychotics can also be taken by people who are not psychotic. Usually kids (and adults too) accept a doctor's authority.

 

Good luck, I hope it works out

 

Gloria

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Hi Kathryn.

 

No advice to give I'm afraid.

 

Medication was once mentioned to my son as an option for the future and he refused point blank and said he will never take any kind of drugs.

 

I can only imagine what you are going through.

 

My son is getting very difficult to manage in certain situations so I may have this battle ahead.

 

Just wanted to send you these. >:D<<'> >:D<<'> >:D<<'>

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Kathryn - it's such a difficult one. My initial reaction was of course you must slip in her orange juice. Then I reflected and as some other posters have said, it could make things worse if she notices a change in taste. I think as far as trust is concerned your daughter is obviously not fit to decide for herself at the moment and you obviously have her best interests at heart. However, she is not going to see that for one minute. I think you should go back to the doctor. In the meantime, lots of cyberhugs etc etc. I hope you get it sorted .. keep us posted how things are going.

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Kathryn

 

This must be really difficult for you.

 

I know when my son gets some sort of belief in his head there's no budging him - it's like he lacks any kind of perspective. If he reads a negative article about medication than that's it proved. As far as he's concerned MEDICATION IS BAD fullstop.

 

We had a very long session with a very patient, and fortunately very unpatronising consultant who managed to persuade him otherwise - mainly concentrating on the exaggerations that papers make in order to sell more and the fact they 'need' to make a dramatic story of it or it isn't a story.

 

After an hour or so he was persuaded. It might be worth a try, especially if your daughter thinks she's fairly media savvy.

 

I now always point out the psychology behind advertising etc. and my son finds it very interesting and is more aware of it now than I am.

 

I hope this helps and I hope you find a solution that suits you both.

 

Best wishes

 

Barefoot

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Hi everybody,

 

Thanks again for your support and advice, I know I can always find it here. >:D<<'>

 

We hope to work on her this weekend, try to find something which will persuade her it's a good idea. She has no concept of the chaos her behaviour is causing in the family or even that she has emotional problems which need help. Because communication is so difficult it's very difficult to work out what she's saying let alone feeling, which makes rational discussion impossible.

 

As for anyone else having a go, she doesn't trust anyone else. At the slightest mention of any difficult subject she melts down - no body else has the patience to handle her. For us at home takes hours and hours of patience. And so far we haven't found a professional who has been able to build up a relationship with her. Most of them don't know their a*** from their elbow as far as autism is concerned. Which puts the pressure right back on us. She hates "mind" doctors anyway and is very suspicious of them. I feel so let down by the health professionals at the moment. The consultant psychiatrist dismisses my concerns and views as I'm only a parent, but is quite happy to dump us back in this situation with no support - suddenly I'm competent to give 24 hour care to someone with autism, mental health problems and communication difficulties. :angry:

 

I also think giving the drug to her secretly is a bad idea. Even if we managed it, the name of the drug would be in her notes - she would find out one day. How far is it to the last resort though? :(

 

K

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You know your daughter better than me, but maybe she's scared that the medication will brainwash her, and thinks you and the doctor want to do the same. Try to explain to her diplomatically, not treating her like an idiot or a criminal or anything, why that isn't so and let her figure out for herself that she's being one-sided rather than telling her, which might be a bit tactless... or get someone else to do that if she's worked up stereotypes about you and won't listen to you. Then, through that person she trusts and likes (hopefully there is such a person) get her to see that you and the doctor and them aren't so bad after all, and that she doesn't have to give up her dignity to be nice to you. Good luck. :)

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My 13 year old was prescribed rispiridone too - & he has always been vehemently opposed to taking drugs. Even when we were talking about it at the hospital he says there is no point discussing it he would just not take them.

 

We did show him the leaflet & it did make him baulk even more - the side effects are quite alarming - but we did manage to reason with him about the litigation aspect & the leaflet having to cover every potential possibility and had a long talk on different genes and the way different people can react to the same thing - we used his own sensory issues to highlight this. We also compared it to the leaflets on headache tablets to get perspective.

 

Then we went over the fact that he was on a very low dose, and that yes in the larger doses then some of the side effects and fears he had may be "turned into a zombie" or would "stop being who he was" would not happen because of the miniscule dose he was on.

 

We put the control in his hands by reinforcing that the reason we wanted him to take the tablets was so that they would help him feel calmer & in more control - not less.

 

Then we pointed out that it would also mean that the stress levels he was currently reaching would be lessened and that the stress levels he was suffering were putting his health in danger.

 

Then we suggested that he had a trial run of the tablets and if he felt in less control or any different to normal - other than helping him with the anger and helping him settle at night and generally feeling a bit less stressed - then it would be his choice & we would stop them and go back to the hospital and speak about other avenues. ( although I am not so sure about if there are any more as we always saw meds as a last resort)

 

Then we explained about how worried we ourselves were about medication & it was only because we were so alarmed about the violence and anger he was having and the impact on him & the rest of the family that we were even thinking about trying medication and that we were also worried about it changing him from the unique person we love so much.

 

Then finally we gave him an incentive on a monthly basis - for us it was �3.20 a month on a subscription for Runescape (an online game).

 

So now we are at the stage where it is part of his routine and he has acknowledged that the tablets have helped - he does still feel "the same person" and feels a bit more in control.

 

I dunno if any of this would work on your daughter, it was just our approach & it seems to be working at the moment - could well be that he will wake up on morning & decide he just isn't going to take them again - but we will cross that bridge when we come to it.

 

>:D<<'> >:D<<'>

 

Carol

Edited by Carol

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>>>Then finally we gave him an incentive on a monthly basis - for us it was �3.20 a month on a subscription for Runescape (an online game).

 

wow - your son is cheap to bribe!

 

I am having a similar problem with my son, he wants to stop taking the anti-d's cos he doesn't think they make any difference (they do - but not obvious to anyone but me) - he says why should he have to take things to make him fit in - why can't he be himself - well, perhaps cos he is unbearable to live with when he is being his usual non-cooperative, hypie self!

 

I remember when my other son took meds, I was careful not to call them meds or drugs - cos he was very anti them - can't remember what I did call them though.

 

Is there any other drug that your child could take? Could you give her a choice which one to take? If she is really down/depressed she is probably unable to make a rational decision anyway though - I know I was.

 

Karen

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Thanks again for your replies,

 

Both L's dad and I had another go at persuading her last night, using similar reasons to yours, Carol. I even offered to take the medication with her for a week :blink: to demonstrate that it was safe. She ended up in another a rage and it took ages to calm her down. Eventually she was able to communicate: (she does this by pointing to letters and spelling out words, a bit telegraphic but her meaning was quite clear). NO DRUG. NO MORE. NO DRUG. I did get her to acknowledge that she had some problems, like the constant tantrums, that needed dealing with because of the effect on her and on the rest of us. That was a big step forward. I said we were trying to think of ways to help her, and her response to that she doesn't want drugs, she wants someone to teach her. I think that because she doesn't speak and appears in her own world a lot of the time we forget she is still a person with strong views. She is absolutely clear about what she wants. She wants help but on her own terms.

 

She has been a lot calmer since I reassured her that we wouldn't force her to do anything against her will. Although I still think the med would help her, she has made a clear choice and that has to be respected.

 

So we go back to the psychs on Monday and tell them. We were already unhappy to have been sent away with just the drug, now this will force them to come up with a more suitable treatment plan. No doubt the psychiatrist will think I am behind her refusal. :wacko:

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Then finally we gave him an incentive on a monthly basis - for us it was �3.20 a month on a subscription for Runescape (an online game).

Hi Kathyrn,

I do hope you make progress this wk/end. I agree, as hard as it is 'slipping' her medication is a break down of trust.

In a simialiar (vaugely) situation, I had to break my daughters trust recently :shame:

She has a heart problem & very recently started passing out. Panicking I raced to my GP with her, who does'nt understand a/s :angry: (mentioned before). Having explained the symtoms, he turned to my daughter & asked her to take off all her upper clothing.

Daughter started screaming the likes of 'keep that pervert away from me' & such like.

How long did it take me to teach her who you can & can't undress in front of ?? :whistle::whistle: Should have put ignorant Dr's on that list !!

Given that he & she are at exploding point, I figured now was the time to leave.

Since then I have found a 'a/s' friendly GP. As much as she hated it, she relented to undressing. I felt that I really let her down :( . The price for this co-operation, a Mac-Donalds!!!, a very rare treat indeed.

On the lighter side this raises concerns for the future !!

I really hope you make progress and your daughter can be persuaded to see that this will help her >:D<<'> >:D<<'>

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Hi Dylansplace,

 

What a dilemma and such a familiar one. We have the opposite problem, my daughter thinks it's fine to wander around in a state of undress and we cannot impress on her the need to cover up when the lights are on and the curtains open. :wacko:

 

How is your daughter's health at the moment?

 

K

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I am having a similar problem with my son, he wants to stop taking the anti-d's cos he doesn't think they make any difference (they do - but not obvious to anyone but me) - he says why should he have to take things to make him fit in - why can't he be himself - well, perhaps cos he is unbearable to live with when he is being his usual non-cooperative, hypie self!

If what he's taking is anti-depressants, he should know better than you whether they're making him less depressed, unless he has amnesia. :blink: Perhaps they make him feel awful.

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Hi Kathryn

 

Any progress yet ?

Nice to hear another person experienced the 'modesty' dilema. It is after all an illogical concept. My daughter could only see clothes as something to keep you warm, so were not needed unless she felt cold. We have been adding to the 'list' of who, where's and when's since she was eight. As she gets older the list just gets longer. It does work though, providing I keep up-dating it :rolleyes:

Thanks for asking about her health. We always known about her heart, and it wasn't a major issue until she developed asthma about three months ago. At least this is what the cardiologist is telling us, I'm not convinced. He say's the asthma is exasabating the heart problem, hense the black outs. So they are experimenting with inhalers. However, having witnessed one of these attacks I think they are panic attacks, and the inhaler is just causing her to focus on her breathing, and thereby calming her down. However, if it is asthma, she needs the medication, though I'd love to try with a paper bag.

My reasoning is that only one attack has happened at home all the others have been at school, and as you know its been hell there !!

Any ideas ??

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Dylanspace - I was appalled to hear your GP asked your daughter to remove all her top clothing. This is totally out of order. I don't have any experience of this particular issue so far as ASD is concerned but when my NT 13 year old daughter visits the hospital and/or GPs to do with her asthma or anything else, they are always very discreet, respecting her modesty (which is a bit over the top in my view - although I think this is normal at this age). They can listen to her chest through a T shirt or by just lifting it up a bit at the back. There is no need for anything else.

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Dylansplace,

 

This must be worrying for you. I hope your daughter's attacks start to decrease now that the school is offering more support.

 

About medical examinations, a doctor is coming tomorrow to assess my daughter for DLA. I don't know what we've done to deserve this. What it will involve I don't know. I hope I don't get asked loads of questions. In the last month we've had more professionals than friends through our front door. :wacko:

 

My daughter is a lot calmer and has had a fairly good day. We have dropped all mention of respiridone. They will have to think of something else.

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Nice to hear another person experienced the 'modesty' dilema. It is after all an illogical concept. My daughter could only see clothes as something to keep you warm, so were not needed unless she felt cold.

Hmmm, well clothes can also make it harder for people to sexually assault you...

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