My 11 year son is about 9 months post hemorrhagic stroke from AVM rupture and about 6 months post craniotomy to remove the AVM. The AVM rupture cause left sided hemiparesis - he had to learn to walk again and use his left hand/arm. Most of the function has come back, but he has considerable spasticity and tone in his lower left left leg, still wears a leg brace and can’t move his ankle or toes. He is going to get Dysport injected into his left gastrocnemius to improve muscle tone, range of motion, positioning, and base of support for ambulation. Has anyone else had any experiences with this? Did it make you weaker at first and more wobbly? Did you see any improvements that lasted after the Botox wears off? Thanks!
My son at 17 had his AVM rupture. He is now 23. His situation is very similar to your sons except he has had right side paralysis. He uses Botox in both his arm and leg for spasticity and improved tone. His Botox shots six years later went from every three months to every four months as eventually the improvements reduce. The key is to not overdose in fear of having no control however using ultrasound before injection can improve the accuracy of the dosage. My son has had success in his recovery for many reasons - Botox is part of that. He was to be wheelchair bound the rest of his life and walks today on his own. One reason we prefer the Botox is it eliminated a medication, baclofen, which has a side effect of sleepiness.
My thoughts and prayers to your family and your son
Thank you so much for your response. It’s really amazing that your son was able to walk after being told he would be wheelchair bound.
My son is scheduled for the botox injection Friday morning, however, I’m not sure if they are using ultrasound, so I reached out to them to confirm. It seems like it would be much better to use that to ensure correct placement.
I just wanted to give an update. My son seems to be doing well with the botox however, late last week and weekend, he had pretty severe flu like symptoms from the botox that have since resolved, which I was not expecting. In doing some research, I found that ‘botox flu’ is a thing. I had no idea. It makes sense though that injecting your body with a toxin would cause some sort of systemic reaction. Now that he’s better, now we need to be vigilant with the PT to take advantage of the reduced spasticity.
It might also be the time of year: there’s a lot of flu and coronavirus going around the schools and colleges here in the UK at the moment and I assume it might be very similar in the US. As you say, challenging your body with a toxin might be enough to make him more vulnerable than most of us.
Hi guys. Just wanted to update. My son has be tripping a lot at school since February. I wonder if he got used to his more relaxed gait while the botox was active and now that it’s worn off, that gait pattern doesn’t work anymore. Does anyone else have any experience with this?
. Just great to know he’s through it.