In the spring of 1999, at a routine checkup with our orthopedic surgeon, our eleven year old son Nathan's hamstrings were tighter than usual and his range was not as good as it had been. We have had long term problems keeping Nathan's hamstrings stretched. Stretching the strong muscles in the upper leg is difficult and it creates a lot of discomfort. Nathan walks with loftstrand crutches, and tends to walk with his knees bent when his hamstrings are tight, creating an inefficient, tiring, slouching posture. The doctor suggested that Nathan be seen for Botox treatment.
We had been aware of Botox for some years, but it had never been suggested for Nathan. I read all of the current literature that I could find on the Internet, and I called Gillette Children's Hospital in St. Paul, Minnesota for its protocol. (Nathan has been seen at Gillette since he was 3 for gait analysis and surgeries.) We did a lot of talking to Nathan about the possibility of doing this treatment. He was neither enthused nor amused.
In late June, we met Dr. Kim Augenstein, a pediatric physiatrist in Traverse City and asked her many questions. She measured Nathan's range of motion, studied his braces and observed his walking. She indicated he would be a good candidate for Botox to improve his range, although there could be no guarantees it would improve Nathan's gait.
On July 19,1999 Nathan was scheduled to receive four injections of Botox. It was not an easy procedure for which to prepare him. As with other children with cerebral palsy, Nathan has had multiple surgeries. Pre-surgical blood draws have been routine, and since he was about three, he has been fearful anticipating procedures with needles. As with most kids his age, once they're over, he says, "Well, that wasn't so bad." Nathan dislikes injections so much that he has said, "I would rather have a blood draw or have an IV to start surgery than an injection". Therefore, when plans were announced to get four shots in the back of his legs, we needed to do some well-planned preparation. In order to ease the pain of the injections, we were given a prescription of EMLA Cream, a local anesthetic, to apply to the sites for injection an hour before. Nathan reported that he had dreams about his Botox injections. He said, "In my dream, I felt one of them but not the other three". I told him that was a good dream and to just keep thinking that way. Since he was thinking about it so much, I called the doctor and asked if perhaps a small dose of Valium for the day of the injections would be appropriate.
So on Monday after returning from a week at camp, Nathan and I started out from our home in Mackinaw City to Traverse City. It takes about two and one-half hours to drive. About an hour out of Traverse City, I drove the car onto a small dirt road and got Nathan out of the car. It was a pretty spot with a lovely valley to view. As Nathan stood beside the car, I covered the upper part of his legs with EMLA Cream. I also covered his legs with plastic wrap, since the cream is more effective if air is kept away. The final effort was taping the plastic wrap on legs that were getting tired by now and wanting to buckle. I was happy that no one was video taping the scene! When Nathan got back into the car, I gave him the Valium tablet and he said, "But, Mom I'm not anxious now, I don't need it yet." I assured him that it would take some time to work and he would need it an hour from then.
In the waiting room there was only one other person. As the person was called in, Nathan looked up and said, "I'm next", in a most ominous tone. When we went into the room, the doctor had Nathan lay down. She took off the plastic wrap and measured the range of his legs. As she was working, Dr. Augenstein said, "Now younger children we might put out, but I'm sure you'll be fine." At that point, Nathan kind of lost it and cried, "Please put me out, kill me, just do anything". The doctor then said she had to go mix the Botox with Saline and left the room. Nathan calmed down, as I reminded him to think about floating in Lake Michigan, something he really loves, while he was lying there trying to relax.
Dr. Augenstein returned with a nurse and she said, "Mom, you just be Mom and the nurse will help me." Nathan rolled over to his stomach, put his chin on a pillow as I sat in front of him and held his hands. I talked to him calmly, and he asked that the doctor tell him what she was doing. She said, "One is done, now just three more." Nathan said, "I didn't even feel that !" As she did the last three, he said, "Ouch, ouch", but only from the pressure of the needle, not from any severe pain. It was over very quickly, and he sat up with a big smile and said, "That wasn't so bad, it was a piece of cake!" Our mental and medical preparation had paid off! (The drug Versed can also be used during the procedure to cause children to forget the event.)
The protocol for using Botox requires stretching of the muscle that is weakened by the Botulism toxin. The muscle is not fully affected until about a week after an injection. Passive long leg stretching was started a week after the injections. Nathan sits in a chair with a soft belt keeping him completely upright and his legs straight in front of him on a stool, with a small amount of weight on his knees. He also attended PT sessions twice a week, where his therapist did some stretching. Immediately, the looseness in his leg muscles and the lack of pain in stretching led to improved range. He seemed taller after about two weeks, since his knees were no longer bent while standing.
Botox is used most successfully while children are in a growth spurt. The muscle lengthens with stretching and the bones grow longer and then so does the muscle. We were told that used too early, children could develop a resistance to Botox and it would become ineffective.
In August, we visited Gillette Children's Hospital and Nathan just beamed when the doctor said, "You're walking beautifully, Nathan." Since it appears his walking is taking less effort and is becoming smoother and at a better pace, he wants to see Nathan in a year for another gait analysis. As the protocol for Botox indicates, repeat injections are often needed at about 3 month intervals, since it wears off. But we know for next time that it is "a piece of cake."
On Labor Day, we always participate in the walk across the Mackinac Bridge. In recent years, we have used a wheelchair for Nathan to cross. This year I asked him to get out and walk some of the bridge. He enjoyed walking and looking around from his full height. He walked under the southern tower and kept right on going until the cable disappeared from view. He kept up a pace that was equal to most of the other walkers and got a few "way to go" and "atta boy" comments from other participants. He's 11, so those kinds of comments embarrass him, but he was very proud of himself.
By Andrea Sarto
Andrea is Nathan's mom and is the Program Director for Support Services for Persons with Developmental Disabilities for Northern Michigan Community Mental Health. She is a former President of the UCP Michigan Board of Directors. More information on Botox can be found on the web at www.allergan.com.