… as we know it!
While there’s no formal treatment or cure for SPG52 we’ve tried A LOT of things to help Dante and always looking for any ways to help make his daily life a little easier.
All the equipment
AFOs, derotation straps, posture walker, chewy Qs … Dante is a trooper for keeping up with all the things.
Dante wears AFOs daily. And since Dante drags his feet from crawling around or the way he walks, we go through a lot of shoes (and hand me downs from his big bro are rarely an option). New Balance sneakers with a Velcro fastener hold up the longest. Most styles of Converse are the most fashionable and easy to slip on over his AFOs. And Crocs are just amazing – they slide on, don’t fall off and hold up forever!
Dante has tried derotation straps that go on over his clothes and hook onto his sneakers. These required another sneaker with a clip attached to fasten the straps. The derotation straps are intended to turn Dante’s legs so his feet are straight when he walks and help him build muscle strength with his legs in the correct position.
The meds
Since Dante’s first two febrile seizures were prolonged (both lasting more than an hour), he was put on Keppra to help prevent his seizures. We were going to visit the subject of stopping the Keppra at his 4-year-old neuro visit but (as usual) Dante had other plans! Since he had another seizure before the appointment he needs to stay on the medicine.
We also carry Diastat or Nayzilam with us everywhere we go in case of a seizure.
Dante has also tried Baclofen and Dysport to help with the increasing spasticity in his legs. We tried the Baclofen when he was younger and did not see much improvement. When Dante was 6 years old, we tried Dysport injections (a generic form of Botox). He seemed to do well with the first few rounds of injections in his adductors. The third time Dante went for injections he received an increased dose, which his body did not handle well. He appeared to have some reaction to the medication a few days after the injections. A few weeks later when the medication really kicked in, Dante lost all muscle strength in his legs. For months he was not able to bear weight in his legs and it was like he had to start all over. Almost a year later, Dante has regained strength but his mobility is not what it used to be.
Vitamins & minerals
Dante is a great eater. He’ll try anything we give him and has rarely found a food he didn’t like. But to ensure he’s getting all the nutrients he needs he takes a daily multivitamin, probiotic, magnesium and omega supplement.