rispiridone ....reduction in dose! my daughter is crying non stop!

[PellMell]

My dd is an adult and severely disabled and has very limited communication
A new psychiatrist has reduced my dd's dose by a quarter since monday of last week.
She has been crying all day today. The crying has occasionally been broken by manic giggling.

Am I just expecting the change in dose to really affect her and blaming that or could she already be feeling much different

She has moved away now she is an adult and I initially contested the view that her meds should be changed

rispiridone is one of those drugs where tiny alterations can have a big effect,but it does depend on what the dosage is, how your DD was before etc - psych might have been concerned about it flattening her mood too much.Does she get PMT? that would be another explanation for the mood swings -I've looked after a couple of young women where that was a definate problem, they were on the right dose of rispiridone to have a useful effect,but cos it doesn't work in quite a heavy handed way as the older antipsychotics, things like PMT suddenly became an issue. She really needs a couple of weeks to adjust and then if things haven't changed ,they may be looking at putting the dose back up anyway.
lisa x

Thanks for your reply .
Yes she does get pmt. She gets very high, aggitated and giggly for a day or two befor her period. She does not have a regular cycle just yet so until her period starts no-one knows if thats the cause.
Her dose (1mg twice daily) has not been altered for a couple of years.
She has difficulties with challenging, repetative and sometimes aggressive behaviours.
As she has now moved into a unit for young people with such conditions, all her care has been taken over by completely new preffesionals.
It was flagged up at her last care review to consider a reduction of this medication as the staff had reported her to be very stable.
I did not disagree in principle but argued that additional concerns about side effects were not warranted and could be ruled out as coincidence. These were about things like excessive drooling (which she had done from birth and not worsened with the medication.

My concerns were that there had been a huge improvement in her mood and sense of well-being since being on it and she seemed to not have any negative effects from it. I was also concerned that as she had been in her new home for less than six months, altering her medication as a "trial" could be an unneccesary spanner in the works right now.
It's so horrible to hear your baby (even grown up ones) crying and not able to speak
I can't get to her tonight, she is a long way away.
poor baby

what sort of place is it she's at? Unfortunately, some places don't have any experienced nurses or RSW's that actually understand meds - They see someone who is well and 'normal' and think 'oh great we can reduce their meds' WRONG!!!! this is usually coupled with missing the ones who are truly overmedicated. If someone is well and behaviour is not an issue then the meds are doing their job - leave well alone.
BTW rispiridone has noticably less side effects than other antipsychotics -and at 2mg per day which is just an introductory dose -the risk of extrapyramidal symptoms would be very minimal - I've seen people on 6-12mg daily and the optimal dose before any great risk of side effects is 4mg a day. I'd keep an eye on things but i don't know what you can do if she's over 18 unfortunately, other than hoping they get real.
lisa x

Thanks so much
This morning I have woken with such feelings of guilt.
The unit is called a transitions unit. It is not medical although she has many medical conditions including epilepsy, immune defficiency and Haemophllia B. She is also severely autistic and has limited speech.
I made a decision that it would not be in her best interest to live at home.All the services(respite care,school,activities) she had become accustomed to as a child dwindled away once she neared adulthood. No-one helped.
I could not cope with her and never could but my God did I try. I would fight to the death so that we could be together.

Two years ago after she had been an only child for nearly 16 years I had another little girl.
DD1 coped brilliantly really, however her aggressive behaviour was an incredible worry and the baby was at risk of serious harm.
Once I had a small baby EVERYONE who had ignored my pleas for help for years suddenly jumped in.
The move has on the whole been positive.
She has appeared to have settled well and is not usually tearful at all.
When I phone she very often doesn't want "talk" but I talk to her and I can hear her breathing and sometimes little laughs etc.
Yesterday when she was told I was on the phone she walked to the phone howling through tears. I couldn't bear it.
She cried "mummy" over and over.

I'm sorry for going on and on. I didn't mean to ramble on.
Once her key worker in in today I will have a chat about all this and ring the consultant too.
dd is going home to her dads family this weekend(otherwise I would have gone to see her) so will be able to have a better idea of her moods from him.

Her dad rang after me last night and she was quite happy and cheery.
Today she has gone off on a trip to London quite happy.
I have asked they keep a formal record of mood changes rather than just noting things in the daily book.
Feel much better now for sharing all this

good news then Pell Mell -I know how hard it is to do what you've done,but it will get easier, and I've found through years of working in the area that ultimately, your relationship will benefit from her independence, you've chosen a time which is right for you both to move on to the next stage.
Lisa X

thankyou Lisa...I really have been comforted by the knowledge that someone is "listening"
x