It just goes to show how much information Odrun and I process, last trip to the rehab team and we were both there.
Jennifer’s physio mentioned spasticity in her legs, she wanted to talk to Torill to confirm and then we would need to examine it further.
Neither myself or Odrun heard that, but if there was spasticity in her legs she will need Botox.
Given the fact she now has her splints and special shoes ordered she will need Botox every 3 months or so to keep her ankles loose and keep her legs muscles from not growing straight. It will also help keep her hips from displacing during growth spurts.
When you think of Botox you probably think of Hollywood, anti-wrinkle agent and prolonged youth.
Botulinum toxin type A, or Botox, is a therapeutic muscle-relaxing agent that reduces the rigidity of muscles or unwanted spasms in a specific muscle. Botox is produced from the bacteria that causes food poisoning and provides relief for muscle stiffness at the site of injection. Though high doses of Botox can be deadly, there are very small doses used in cerebral palsy cases. Over the past ten years, the use of Botox has shifted from wrinkle reduction to successfully treating muscle spasticity in children with cerebral palsy, making Botox and cerebral palsy a hugely successful match.
The marriage of Botox and cerebral palsy may seem odd at first, but is actually quite practical. When prepared for therapeutic use, Botox is injected in small amounts into the spastic or stiff muscles. It begins to take effect by blocking transmission between the nerves and the affected muscles. The injection stops the signal between the nerve and the muscle, relaxing the muscle and reducing stiffness. Botox only affects the muscles that are injected and once the muscles are relaxed, therapists are able to stretch the muscles and stimulate normal growth.
You may think that Jennifer is unlucky, and yes she was!
But everyone with CP has been unlucky, in the end it doesn’t really matter how the brain injury happened, that initial shock or heartbreak was initially harder than anything else we’ve had to deal with…..
But after a while you realise it was nothing compared to the daily struggle you have to see your child go through.
In general people see the disabled child, not the child.
Not many know your child with CP, they only get to see everything else, and they don’t have enough time to be able to get close and try to understand because everything takes so much time and everything is just so different. But on the inside there’s still a child, who has feelings, and who in no uncertain way can show love and affection like any other child.
I’m a softy for these kids, I’ve seen a lot of heart breakers lately, one girl about Emma’s age who was having Botox at the same time as Jennifer….
Sitting in her wheelchair, couldn’t talk, but looked straight at me…..looked down at Jennifer laying on the couch, then looked straight back at me and smiled……
A picture burnt into my brain that just doesn’t have enough words!
The modern-day child with CP is also lucky to be living in the modern world of medicine, where ground breaking findings happen often and researchers are granted almost endless government funding.
For Jennifer this is the most effective time for her to start using Botox, children before the age of 6, especially in children whose joint contractures are not fixed benefit most. Botox is most effective when used in the early stages of spasticity while the child’s bones are still developing and before problems with bone development and deformity set in.
She had one shot in each groin muscle and one in each calf muscle, if it goes as planned her feet will loosen up allowing her to bend more at the ankles, she will have a wider range of movements in her groin and the shaking should stop.
This is preventative maintenance really, it doesn’t mean her legs will all of a sudden start working normally, but it does mean she will have a chance to learn to use them normally without the restrictions caused by her spasticity.
Already 3 days later and her feet and ankles bend freely, no more tightness…..
Like everything else, it gives you hope……
But like everything else, you have to take things one day at a time because you know there is just no permanent cure……..