Life with CP

A family's story living with cerebral palsy in Chicago

Life with CP - A family's story living with cerebral palsy in Chicago

Botox

Yes, Botox. It’s not just for rich, older ladies anymore!  It has been used for a few decades on the muscles of patients who’s muscles are stiffened to help them relax. In Jacob’s case, he has high tone. Which means the nerve impulse fires rapidly between the muscles and the brain- and they are always “on”.  Try to squeeze your fist tightly. It feels tight and not bendable, right?  This is what Jacob feels normally throughout the day.

He 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.

On August 22, 2008, we went for our first botox injection. Botulinum toxin (Botox) , is a medicine that has been used for decades in the medical field to decrease tone and unwanted spasms in a specified group of muscles. Botox, is essentially the same toxin that is linked to botulism- which is a type of food poisoning. However, in small doses can be extremely benefitial to patients. The results typically can last from 3-6 months.

Researching on the internet made me so nervous. People in Web groups that I belong to have posted many negative effects from Botox. (There are some scary things on the internet if you go looking for them).  The worst effect being death.  We debated for months and even put it on our back burner for a bit while we learned more.  I spoke with our therapists and eventually felt more comfortable doing it.  Our doctor explained that they identify which muscles need the relaxation and they find the weight of the person. The problems occur when doctors exceed the dosage recommended for the patients weight.  They then distribute the correct amount of Botox into the of muscle.  For example, Jacob had 4 spots; left adductor, left hamstring, right adductor, and right hamstring.  They found his weight and figured the correct dosage for him.  They also believe that he could benefit from his calf muscles as well, but our doctor worried that it would not be enough botox to spread to 6 injection sites.  She also determined that his right side is tighter (all over his body) and gave a little more botox to his right side than his left.

Positive Effects – Wider range of motion, ability to stretch further, stronger gait when standing or walking, ability to crawl, walk, etc.  In the hands – turning doorknobs, holding pencils, etc.

Negative Effects – Some sites that I have been on have noted no negative side effects whatsoever. However, I have read on message boards that some have expeirenced difficulty swallowing, difficulty breathing, and even death.

Often, in conjunction with Botox, serial casting is used.  This is a process where a patient’s limb is immobilized into a cast.  The main objective is to broaden the range of motion in the specific area after the botox lessens the tightness.  The feet and legs are most often done. The patient is seen weekly, while re-assessing how much more range to set- and then recast.  This typically last from 4-6 weeks and results have been great.  Can you imagine how far you would be able to strecht your hamstrings after a month of this?

We are extremely pleased with the results on Jacob. It seriously has been a miracle what it has done for him and I see such a bright future for him!  If this is something that you are interested in… please talk to your therapists, doctors, or even specialists to see if this would be a route for you.

Category: Uncategorized
  • Sarah says:

    I am getting a similar thing done in my calf muscle. Its because when I was born 2 months early, I had right side brain bleed, giving be a 50% chance of having cerebalpaulsy but i got the lucky when the better 50%. I have a side eefect that causes me to toe-walk and my whole left side is my weak side. But tje procedure will be that they give me botox in my leg. Then a week later the will start the serial casting and i was wonder, if you know what kind of cast it is? BTW im 14

    November 4, 2008 at 9:57 pm
  • Sarah says:

    if you didnt get this through email, here is what I wrote…

    Hi Natalie, no problem on posting.

    I toe-walk and the left side of my body is stiff. That pretty much as bad as it gets. I walk with a limp to help muscle pain. I’ve heard that i walked with a brace when i was little but don’t remember. My parents say its a miracle I walk at all and when i was a baby and walked for the first time the doctor took me around showing everyone. ALso when i was little i got calf injections and it hurt really bad, but they really didn’t do any numbing treatment. and with that i did some physical therapy. Now they are going to give me medicine, to sort of make me loopy. I’m getting it done a week from today(on 11/11/08) and the first casting about a week later, so it can take effect. My walking level is fine like I said above, I run the mile at school, just not as fast as everyone else(with the addition of asthma) and to take the pain out of my left side i put more wait on the right giving that more pain, kind of confusing. I’m guessing this would be a no, but can your son bend his toes, that is one thing I have problems with. i have very little ability to move my left toes and ankle. On the Orthotics I’m pretty sure of what I just read on it, it was one of my choices besides botox. I think the same for the AFO’s.

    Sarah

    November 9, 2008 at 10:53 am
  • Natalie says:

    Hi Sarah… thanks for posting again. Let me know how the botox goes for you. I am interested to see how it actually feels from someone who goes through it. Jacob is only 2 and can’t use words to tell me. (There was a bit of crying….) We didn’t use a numbing cream, maybe we will next time. He is scheduled to go again, if needed, in January.
    It’s great that you are such a success story. You should be so proud of yourself. I am willing to bet that you worked pretty hard to get where you are today- and being on the mommy end of it, I bet your parents are too.
    What do the doctors tell you about your limp? Do you still receive physical therapy? Which kind of doctors are you still followed by? Orthapedic? Physiatrist? Neurologist? We have a team of 6 doctors and see 5 different therapists.
    You really inspire me…while Jacob still very much needs his walker to walk, I can see a little glimpse of his future without one…
    Good luck tomorrow. Natalie

    November 9, 2008 at 11:31 am
  • Sarah says:

    Hi.

    Its alright about the questions. No, no medicines. No they never have really talked about it, i just live with it. We think I got it when I was 10 or so, cause I was in grade school, but not sure on the exact age. And about the limp, it was never a big deal to the doctors, that I remember, I was just a way to ease pain in my leg. I recieved physical therepy after the first time i got botox, but I was little and unwilling to keep up with it, at home. I have said I wanted to go back, and that sent me to a not a physical therapist, but gave me options on how to work on my leg, im guessing a Physiatrist, but im not sure. Other than that no other doctor anymore, besides my regular doctor. Thanks for the compliments and thanks for the luck.Same to you and your son.

    Sarah

    November 10, 2008 at 1:03 am

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