Today was a BIG day for our little Shay-man! Today was the day that he FINALLY had his botox injection. He had botox injected into his adductor muscles and his right hamstring. He did absolutely amazing - he was sooo brave today - i was so impressed with him - he seriously inspires me!
Shay was quite distraught initially when he had to get the injection sites marked on his legs. This caused him to be AS upset as the injections themselves! It was new and it scared him :( Thank goodness they had a Thomas DVD - this helped calm him a tonne! He cried only briefly with each of the six needles - we gave him a timbit as soon as the injections were done - and life was good again for Shay!
We decided to make the day a little more special than usual as he was so strong and brave! Cris and I ended up going to Toys R Us after we left ErinOak and let Shay pick up a train for his collection. He chose Harvey. We came home, he had lunch and then he was down for his nap. After his nap, we went and picked Ciaran up from Daycare and then proceeded to Hamilton for Horseback riding. It was amazing tonight - Ciaran rode Ebony (much less skittish than Conor) and Shay rode his beloved Galway. They rode frontwards, backwards and did some trotting. It is crazy how much stronger they are after 3 months - I see a huge difference in their stomach muscles and Ciaran's neck muscles - I will have to get some video footage to compare from the initial videos.
With regards to the Botox, we were told not to expect to see visible changes for at least 2-3 days - and more than likely not for at least a week. We will be involved in intense Physiotherapy in the next six weeks as we take advantage of the tone being diminished and really focus on developing the weaker muscle underneath the tone and work on creating new gait patterns in Shay's brain. I have copied a brief description of Botox below. We are going to get a before video up tomorrow and then get one in a couple of weeks to see if there are any clear differences.
The next two or three months will give us a much clearer idea as to what Shay's mobility will look like in the future. We continue to hope and pray that he will become more independent with his walking - the desire is SOOOOO there - no matter what the end result - we know it will not be due to a lack of trying on Shay's part.
That is all for tonight - will share video in the next few days!
BACKGROUND: Children with cerebral palsy (CP) have problems with muscle spasticity. The brain sends abnormal signals to the muscles to contract, causing difficulty with walking and other motor skills. Researchers say 88 percent of patients are diagnosed with some form of muscle spasticity. Foot deformities, where the foot points downward, are common manifestations of prolonged muscle spasticity. This often leads to abnormal motion, impaired balance, and permanent foot deformities that may require surgery.
STUDY/PROCEDURE: Research has shown that injections of Botulinum toxin type A (commonly called Botox), a neuromuscular blocking agent, reduces muscle tone/overactivity in children with CP. "We disconnect the wiring so the impulse from the brain to the muscle doesn't actually reach the muscle any longer," says Doug Wallace, M.D., a pediatric orthopedist at Children's Hospital in San Diego. Children's Hospital was among nine medical centers worldwide that enrolled 207 children in a study. Botox injections were given approximately every three months. Outcomes measured included a Physician Rating Scale of gait, ankle range of motion measurements, and the incidence and profile of adverse events. Dynamic gait pattern on the Physician Rating Scale improved in 46 percent of the 155 patients at first follow-up. The response was maintained in 41 percent to 58 percent of patients for two years.
ADDED BENEFITS: Muscle surgery for children with CP is often not successful in the long-term because of their continued growth. The affected muscles must stretch to match bone growth, canceling the effects of the operation. Surgery also has potential complications, such as infection. With Botox injections, children with CP can often delay or even avoid surgery. For the temporary pain of an injection, Dr. Wallace says a Botox shot can be effective for as long as four to six months. There are almost no side effects, according to Dr. Wallace. In addition, Botox injections allow such precision that parts of muscles can be targeted. This allows the patient to retain the use of the unaffected part of the muscle, while allowing the affected portion the
In Shay's case, he has high tone. Which means the nerve impulse fires rapidly between the muscles and the brain- and they are always ”on”. Shay has had difficulty walking for a few reasons, one of them being that his adductors, (or inner thigh muscles), were really tight and this caused him to scissor step. When he walks, sometimes his ankles cross over the others. How far could you get walking this way? We have tried a few pieces of equipment that physically stop him from crossing over, but botox allows him to have more control over it. He also has issues with his hamstrings being tight, which causes him to sit on the floor with a rounded back. Stretching is a daily activity to help him stay as limber as possibe.
The next three months will be dedicated to stretching, physiotherapy and trying to get Shay to transition to walking with his walker as his primary mode of mobility - wish us luck and say a prayer!