Made of Gray

First Round of Botox

Holly D Gray3 Comments
At the beginning of this year we decided, after seeing the ortho doctor, that Caleigh would need some type of intervention for her tight muscles in her legs. After going back and forth we decided to try Botox injections first. You can read and see more photos of Caleigh's legs back in February before the Botox here and in the photo below. 
FEBortho3
 2-2012
Caleigh handled the injections really well. We didn't plan ahead well enough regarding the Versed medicine that is given to ease the discomfort and basically make the patient forget about the experience. Caleigh's inability to tolerate sugars was the issue. The only form of Versed that the office had ordered was a deep red oral version that was obviously full of some sort of sugar. We wavered back and forth on whether or not to give it to her. Options like bringing child life in, taking breaks, playing her music were given to us, but in the end I remembered every parent that told me about the injections without anything to cut the edge....miserable. So with it being just one dose, we went ahead and gave it to her. I'm glad we did because she still jumped with each injection, and there wasn't any immediate intestinal reaction to the medication. Caleigh received six shots which was divided up from one vial of Botox.
APRBotoxDay1
4-18-12
By that night, Caleigh's feet were already touching the floor. Eric and I kept looking at each other checking to see if we were imagining things. We were told that we wouldn't see any results for 3-7 days. That same night though, she was standing flatter than ever before. The next morning Caleigh woke up and told us "I don't like it." Her legs felt different and she wasn't too keen on that. Eventually she was ok with her "new legs."
MAYBotox5-1-12
5-1-12
A few weeks later, Caleigh's legs and feet looked really good. They were flat and the turning in seemed a bit better depending on how she was bearing weight. This is when the side effects kicked in. In all her years, Caleigh's short gut has never been constipated unless there was a stricture or blockage; Botox changed this. For several weeks we dealt with constipation, crying while trying to go potty, disturbed sleep and general discomfort. We gave her Miralax as needed and crossed our fingers hoping we didn't tip the scales too far by doing so. With the constipation, Caleigh was pretty emotional about all the changes she was experiencing.
JUNEBotox6-5-12 
6-5-12
Today, Caleigh's heels are still very close to the ground. We were told that the affects could last from three to six months. The Botox has worn off quite a bit, but we can still see a difference. Caleigh's quads and knees seem to be tighter than before the injections. She is also scissoring her legs some when on her back which she wasn't doing before. Her feet are turning inward more than they were before as well. The constipation has gotten better, but Caleigh isn't back to "her normal" in the stool department. We have definitely been reminded that the human body is a whole system. You mess with one area and other areas will change. There is the option of increasing the amount of Botox used with the next round. The one vial was a small dose to see how Caleigh did with it. You can't hide the fact that it worked in bringing her heels to the ground which prolongs the need for surgery. Eric and I are unsure if there will be a next time due to the side effects, but we will definitely talk it over with our neurologist and ortho before making the final decision.
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