Benzhexol for athetoid cerebral palsy. Anyone with any experience?

[sneezecakesmum]

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?

[sneezecakesmum]

Anyone? I Know its a long shot though

[Giddypants]

Bump

[sneezecakesmum]

Bump?

[smilesintherain]

We have had this mentioned as an option to reduce a movement disorder - not tried it yet though!

[survivingwinter]

If you don't get any replies here might be worth trying FB groups as I know a few are for parents with kids who have dystonic/athetoid CP. Can give you some links?

[sneezecakesmum]

surviving winter. Yes please, we are desperate for a bit of info on this and not had any luck on Scope or Inspire yet!

[survivingwinter]

Hi will pm you with some info...