Cerebral Palsy
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Has anyones child been given benzhexol for athetoid movements?

renacahillrenacahill Member Posts: 145
edited May 2014 in Cerebral Palsy
It is to reduce the unwanted movements not for drooling, which is what most of the research mentions. Saw neuro paed yesterday for DGS age 4. Botox not needed or baclofen. She suggested he had a trial of benzhexol. On paper it looks brilliant as it blocks some receptors and reduces athetoid movements (thats the theory) Results are 'equivocal' and we dont know anyone on it but are up for the trial to see if his movements can be controlled a little. He struggles so hard to control his arms especially, and the side effects dont seem too drastic.

Anyone heard of used this on their child?

Replies

  • My_angelMy_angel Member Posts: 18 Listener
    Hi

    my daughter is also athetoid CP - would be interested to know more about any treatments to slow down her movements. Have you had any luck to find more info? unfortunately we have no one to ask at this end as our we dont get much advise from our Ds/ would be great to hear from someone who has tried.

    Where i can read about research for this thing? TA
  • MazBMazB Member Posts: 9
    Hi, my daughter also has athetoid CP. We are trialling tetrabenazine at the moment, only on a small dose and haven't noticed a great amount of difference yet, she does seem to sit still better some of the time, but that's about it. We are seeing her paediatrician next month so may look to increase dosage then, will try to remember two special back on with update after then and see how things go.
    I found it very difficult to find any information on this sort of thing so if you find anything interesting please could you share it, thanks
  • My_angelMy_angel Member Posts: 18 Listener
    Hello, thanks for reply.

    How is it going now? have you managed to increase the dosage? wonder if you noticed anything so far.. I am just struggling to find about anything that would help to reduce such movements.

    thanks
  • MazBMazB Member Posts: 9
    Hi again,

    Sorry it's been a while... We did notice that sometimes when eve was sat with us she was calmer but she still had a lot of excess movement and her arm control was no better, we increased the dose but found that she suddenly started waking more at night and was retching, so we went back to original dose, and she stills wakes but less so...

    She seems to be salivating a lot, not sure if the tetrabenazine is causing this or if it causing her problems dealing with the saliva...?

    Has anyone tried the benzhexol yet? I have read that one of the side effects of that is that it can reduce excess saliva which may be helpful for eve?

    Due to see paediatrician again at end of July so we'll discuss again with him then...

    Thanks, Marianne
  • Sam_ToucanSam_Toucan Member Posts: 24 Connected
    My 6 month old son has recently started benzhexol on a low dosage. He also started vigabatrin for infantile spasms at the same time, so it's hard to tell what the effects of each drug are in isolation.

    If anything, athetoid writhing movements when at rest have increased on the medication. However the more dramatic extensor spasms he was getting have definitely reduced, as has his overall muscle tone. His co-ordination is a bit worse but he is definitely more comfortable overall.

    Sam
  • renacahillrenacahill Member Posts: 145
    edited June 2015
    Sorry not to have come back sooner but that thing called life got in the way!! :-)

    http://www.sepeap.org/

    This is a research document outlining the benzhexol (trihex...etc) ! My grandson is on a much higher dose but this is recommended for more affected children and the results are better with this dosage.

    Changes we have noted..(he has now passed the 15 week period) and is stabilised on his 28mg per day dosage. We noticed a very quick improvement in hand function. He recently started picking up things in his right hand and giving them to his left (never done in 4 years)! His speech improved though it is still very poor. His extending has eased a little, but this will take time because its not just his CP but his brain has this pattern ingrained into habit.:-( He can though come out of it immediately we say, come forward, also relax his legs from the extension (to get him out of his car seat for instance) at first on command now without being asked.

    Nursery and his physio both noticed improvements in fine motor skills and overall stability. Its not been a miracle, but definite improvements, especially as things seemed to have stalled. Looking at him I think part of his poor movement control is now habitual even though the signals that provoked the movement (unwanted that is) have been damped down. He sits beautifully with one finger (ours) 'supporting' him but wobbles over when we 'let go'. We now have to get him to relearn better ways of moving now that the signals are not so scrambled. It will be difficult but not impossible. If you go to youtube and type in Karen Pape there is a video by her (she is a neonatologist) and her theories fit so well and apply to my grandsons movements and how we need to work on changing them.

    He has had no real side effects. slight constipation which we are managing with more fruit and vedge. he has a gastrostomy so we can do all that with the blended diet we put down it!!

    We are extremely happy with this drug. We also know someone in USA whose son who is more mildly affected and has really improved massively from not really holding a crayon to drawing a man. I think it is one of the only things on offer for athetoid children and would recommend anyone whose child particularly has basal ganglia damage to ask about it. The younger the child (within reason) the better.
  • My_angelMy_angel Member Posts: 18 Listener
    Thanks a lot to: Renacahill, just after I have seen your post on this forum I have discussed with our Neurologist in order to get Benzhexol /tryhexephenydil to my child with Athetoids/Dystonia. The Dr had no concerns not to prescribe it so we are now taking it for 5 weeks, started from a half tab twice daily, in four weeks increased the dosage to one tab/twice daily. I have noticed changes right away with the overall balance, her hand control has improved - she is now trying to clap hands, sitting also seems better - less wobbling. In general she is more relaxed and smiles /screams more than before. We have been visiting osteopath for couple of weeks too so it might be combination of both, but to me Benzhexol works but it self. WIll be watching my kid for further changes and will try to report on this page.

    Once again appreciate for giving this info,
  • renacahillrenacahill Member Posts: 145
    Hello my angel. I am so pleased you are having results with the benzhexol. Those are exactly what we noticed very quickly, even though results are not expected for much longer (15 weeks) I think the younger the child (within reason) the better. I think, looking at Elliot, the longer the 'bad' movements are allowed to go on the more difficult they are to shift. Lots of research supports this view. My grandson is nearly 5 and I wish we had known about this sooner. We are continuing to see small improvements. Sitting is improved and the extending is much easier to come out of. If he is engaged in an activity he will use much better hand movements with good variation but if he is being a stroppy 4 year old he won't try at all! No side effects, no difference in dribbling but he hasn't done that anyway for a year or two. We get a syrup from the chemist which is much easier than tablets to give. I think its worth a trial with dystonic children and hope it gets more interest from the neurologists.
  • MazBMazB Member Posts: 9
    Hi, so glad to hear good reviews of this medicine, we are going to collect our first lot tomorrow so fingers crossed we will see some positive results. Will keep you all posted. Thanks again for sharing your experiences.
  • maryholmesmaryholmes Member Posts: 8
    Hi I would like to thank you for informing parents who have children with dystonic cp on this med, I am going to ask our neurologist in appointment next week for it as we have struggled so much with our sons involuntary movements and the pain he is in with it, please keep me informed on anything you think may help, thanks
  • renacahillrenacahill Member Posts: 145
    I am so glad you have found this useful :-).

    I have looked at treatments for children with dyskinetic movements. My grandson was diagnosed at 6 months with spastic quad but over time he became more relaxed and jerky in his movements with wobbly head and trunk control. I never came across any medications for his type of cp. plenty for spasticity though..

    He has fluctuating tone and can be rigid on minute and floppy the next. The neurologist who prescribed the med saw two different children! The one she examined was rigid, scissoring his legs with rigid clenched fists. So I thing she was thinking spasticity. Next minute he was sitting on my daughters lap, legs dangling loosely, arms and hands relaxed doing the athetoid twiddly finger thing he does :-))). I asked then is he spastic, or athetoid? She said well he's more on the dyskinetic side. Think she changed her mind in an instant!

    That's when she said "I would like to trial benzhexol!" ...so make sure your neurologist sees the real child as we could so easily have left without anything. She did say to trial benzhexol and if no improvement levodopa. That is a med for Parkinson's disease in adults and frankly the studies have been pretty damning in children. No real effect usually.

    I will carry on telling every parent with a dyskinetic child to go see what their neurologist says.
  • MazBMazB Member Posts: 9
    Hi, it's been a while since anyone commented on this post so I thought I would check in and see how everyone is going with this medicine.
    We stopped it after a few weeks as we found Eve wasn't sleeping very well with it and she also seemed to have more unwanted movements not less.
    Going to speak to paediatrician again in a couple of weeks.
    Thanks and hope you are all having more success than we did x
  • renacahillrenacahill Member Posts: 145
    So sorry the medication did not work out for Eve. Its like any med, you get variations in response. Ask about levadopa and trebanazine. The last one may be more suitable. I have heard this used in USA with good results but not here, so I dont know what response you will have. Ive seen it can help with the type of movements you specify. There is also Deep Brain Stimulation for severe dystonic spasms. Again I'm not sure of your response! But its as well to research things yourself. Its my new hobby! Good luck.
  • My_angelMy_angel Member Posts: 18 Listener
    Hello everyone
    Just to send a quick report on what we can see..

    I think we have noticed some more improvements after taking the trihexaphenadyl and especially when the dosage has been increased as per Dr. recommendation.

    my daughter 3,5 y is dystonic/athetoid CP able to bring herself into W sitting for few seconds and used to collapse, but wasn't able to move around - now she is trying to bunny hop and W sitting long enough and looking around the room, trying to turn her head and back. Lifting her hands and reaching for toys and also started to hop on sofa... which is dangerous but we always there to support her if she falls off.
    I can't say its 100% medication as we do a other things too but its definitely helping somehow. Her sleeping remains the same - she used to wake up once or twice and sleep again so I didn't notice any side affect so will keep taking Tryhex and possible increase a dosage again in couple of month...so fingers cross.

    Good luck everyone,

  • renacahillrenacahill Member Posts: 145
    my angel. I am glad you are getting some response from the drug. Its not a miracle (unfortunately, still waiting for one of those!) and I'm sure the other therapies are all contributing, but and progress is just wonderful. We are increasing slightly as elliot has gained weight. Still no significant side effects and hand function is slowly improving. Thought it had deteriorated when he started just dropping objects but then I realised its just because he didnt want to do it! He sat for ages moving the latches and locks on a christmas toy with some pretty neat hand movements! Typical :-).
  • TripletmomTripletmom Member Posts: 37
    Hi all,

    Just wanted to know how the Benzhexol is going? Been offered it for my son?? Needs something as involuntary movements seems to be getting worse?

    Kelly xx
  • renacahillrenacahill Member Posts: 145
    Benzhexol is still going well though we think the dose needs increasing as elliot has put on weight. Hes been on it almost a year now and due for a neuro review very soon.

    His hand movement is still improving although he only uses one hand with any sense, but he can now open and close his hand on command which is quite an achievement for a child with athetoid CP. Its not done much for overall balance but its more for hands I think. Very little in the way of side effects so its been worthwhile for him.

    I would go for it asap as its better for younger children with fewer side effects.
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