we've moved!!!!!!!

This blog has been moved to http://www.westofhomesouthofsanity.com/.

Botox and a busy body

‎"God doesn't give children with disabilities to strong people: He gives them to ordinary, everyday people, then He helps the parents to grow stronger through the journey. Raising a child with special needs doesn't TAKE a special family, it MAKES a special family." 
Author Unknown, found on Cerebral Palsy Family


Nick's cerebral palsy, specifically his left-sided hemiplegia, has made it's annual summer appearance in the form of a rolled foot. The foot is a combination of factors: he isn't wearing his orthotic as much because he's in and out of the pool, he isn't on his ADHD meds because it's summer, he is nonstop from sun up to sun down and he's learning new vocabulary and concepts. Nick's brain always compensates when he's developing new skills and those new skills require more mental direction, so the foot starts to roll.


The past few summers we did serial casting to encourage the ankle to straighten. Last summer, he ended up with a cracked metatarsal bone. He doesn't care if his foot isn't flat, there is fun to be had in the backyard and he will propel himself at top speed toward it.


This summer we are trying botox injections to relax the spastic muscles in hopes of avoiding the serial casting and broken bones. Nick's physician specializes in pediatric rehabilitation spasticity management and we feel he's in good hands, but I did read the risks list and found fear creeping into the decision.


The handout from the doctor includes a statement from the Federal Drug Administration (FDA) stating a possible link between botulinum toxin injections and 4 deaths in children who had received botox. Those that died were males (CHECK), at least 2 had seizures (CHECK), at least 2 were immobile, at least 2 had gastronomy tubes, at least 2 had cerebral palsy (CHECK), one had spina bifida, aspiration pneumonia was the final diagnosis in all the children.


According to the doctor's handout and my own research, botulinum toxin can spread to parts of the body that were not injected. This can cause unintended muscle relaxation and, unfortunately, death in isolated cases. When used correctly, Botox can block the ability of nerves to release chemical messengers that signal muscle tissue to contract. By blocking these messengers, muscles relax and can be stretched at home and by a physical therapist to stimulate normal growth and increases in range of motion.


Working my way through the "does your child have" list brought slight alarm.

1. Seizures (his are myoclonic in nature and are currently controlled)
2. Problems with swallowing 
1. Drools a lot (BIG CHECK if he's concentrating. We've all learned the rule of telling Nick NOT to put his head on your shoulder if you'd like your shirt to stay dry)
2. Can't chew (Does "won't chew" fall into this category?!?!?)
3. Coughs with eating or drinking (Absolutely when the TV is on and he forgets he has food in his mouth and goes to speak, there's quite the coughing and gagging)
4. Needs a gastronomy tube (I do hope those with children who have g-tubes forgive me, but there are days when I'd beg for a g-tube. Getting Nick to eat is not for the weak and it is so painful to put him on a scale and realize he's gained only 6 lbs in the 5.5 years he's been a part of our family.)
3. Problems with moving around (Are you asking ME or HIM? He certainly doesn't think so!)
4. History of aspiration pneumonia (SEMI CHECK)

The SEMI CHECK is because I'm not sure if the pneumonia was viral or from aspiration. At the time, he was a chipmunk champion - he'd hold pockets of food in his cheek for H-O-U-R-S. When told to swallow, he'd scream (What? Nick scream? Never!) like a dying penguin and choke on what had been forced down the windpipe by the blast of screaming air. Nick became extremely ill and the doctor wanted to admit him to the hospital. My husband was in California, I was single parenting 5 children, so I pleaded with the doctor to let me treat him at home with daily visits to her office. A few days later, Hurricane Ike demanded we evacuate before destroying half of our home we'd occupied for 2 months. 


Cue the choir with something dramatic like Amazing Grace.


After discussing Nick's risks, the doctor concluded his are low. She will use a relatively low dose and a restricted number of injection sites. I never would have guessed Botox would be a part of my life, especially in this way, but if it can help my busy body avoid further trauma and give him a little stability, we're game.