How do you know when your child is in pain? Well, maybe we’re not the swiftest because it took us several weeks to figure out that Jacob was in pain all those difficult evenings. It’s a bit embarrassing how many smart people, parents, therapists, doctors, etc. it took to realize that Jacob was in pain due to spasticity. 

I guess we knew this day would eventually come, but we hoped that Jacob would be different. We hoped that with all the special therapy, nutrition, and experimental treatment would somehow protect Jacob from the inevitable effects of this degenerative disease. This may be the first lost battle in the race to treat Jacob before the degenerative effects catch up. Clearly, we can’t afford to lose any more battles.

On the bright side, we finally got to the local botox clinic yesterday to help relieve Jacob from the pain from spasicity. We’ve had him on pain medication for the past couple weeks which has certainly helped. In a few days we’ll wean him off these meds in hopes that the botox will be enough to do the trick. Jacob got eight shots in his calves. It will take some time to take effect and we may have to do some more muscles to relieve his pain. In any event, it looks like we’re back on top of this one.

Time to get back to the bigger picture and get some experimental treatments underway. Next stop, seizures. What will we do? Do we treat him for seizures even though he doesn’t have clinical seizures? Looks like we need some more investigation.

Maybe we’ll try anti-seizure meds. Maybe we’ll get to try the experimental treatment in a hospital. Maybe we’ll do both together. Keep your fingers crossed for our little Jacob!