Today Bennett had an appointment at our local Botox clinic for a follow-up to the injections he received in February and a reassessment for future treatment. As I've mentioned in the blog, we saw very little improvement from Botox. If you ask Jim and I we would say we saw nothing.
From the beginning, we were concerned about Botox treatments. Many parents have seen fantastic results and the injections have helped so many kids. Despite our reservations, that's why we were willing to try it at least once for Bennett. I wasn't sure what the doctor would recommend this time but I knew if he suggested it again we would have a tough decision. Despite the fact that it is commonly used for cerebral palsy and has been for a number of years, Botox still hasn't been approved specifically for CP. There are no long term studies (that I have been able to find) that indicate the effects of repeated treatment.
Needless to say, I was relieved when the doctor said no more Botox - at least for now. He'll be reassessed in January and once again Jim and I will make our decision at that time. The doctor remains a bit puzzled by Bennett's unique gait which is not characteristic of hemiplegia at all. He thinks the biggest factor affecting Bennett's walk is tightness in his hip and has recommended a stretching and exercise program to help with this. Hopefully that will help enough and we'll be able to avoid the Botox decision again.
Bennett
Murphy
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7 comments:
Sounds like a good appointment. Sam has tightness in his hip sometimes too. Especially during a growth spurt. We do stretches, or try to do stretches. Trying to stretches with a three year old is hard work. ;o) Maybe a workout even!
We haven't done botox with Sam. So far we have been able to stretch through the tightness, I worry about the day when it is recommended to us. Because I have NO IDEA what we would decide.
Suzanne - I hear you on the stretches! We have such a hard time with Bennett - the leg is almost impossible! A couple of the stretches are supposed to be held for 2-3 minutes!!! Frankly I don't know what to do about it. I'm hoping it might get easier as he gets older and understands the reasoning behind it.
Can your PT help you at all? I mean, ways to distract or position him? Barbara
Barbara - Our PT has been quite helpful in coming up with ways to sneak the stretches in - standing on a wedge while playing at a table, getting him to wear a Zimmer splint while sitting for circle time, and having her student and preschool leader rolling all over the floor to distract him while she stretches him.
When he was younger and not walking yet it was easier - between Jim and I we could do it. Now that he's a man on the move it's very hard to get him to stay still and tolerate a long stretch. I think it has a lot to do with his age.
Unfortunately another limiting factor is my inablility to squat or kneel. I often think how much easier it would be if I was my "old" self.
Starting in September, he'll be attending JK at our local treatment centre. They go to the hospital pool once a week - the therapist thinks this will be a great opportunity with the warm water.
Hopefully we'll be able to keep coming up with ways to sneak those stretches in!
Goodness, that sounds like a comprehensive plan! I agree with you on all counts. He seems to understand so much - can stretching be taught to him like brushing his teeth? You know, everyone benefits from some stretching...if he likes to imitate...I feel for your own immobility. Barbara
Effects of Botox last three to six months.Botox can be injected into specific muscles to temporarily relax them resulting in an inability to wrinkle the skin overlying the treated muscle.
Strange that putting poison into ones system can be beneficial.
Hopefully Bennett can continue without the Botox.
The pool is such wonderful theropy and the heat helps heal all aches and pains.
Maybe later on Bennett and Mummu can stretch together.
Bennett has such a wonderful attitude and spirit. He is truly a God Blessed child.
Blessings to all of you.
Love and Prayers
Poppa and Mummu
xxx ooo xxx ooo xxx ooo xxx ooo
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