Tuesday, June 22, 2010

Cerebral Palsy and Botox

Cerebral Palsy is still new to us. I feel like when Nichole was 5 months old I knew a lot about Down syndrome, but now that Nina has been with us for 5 months I still feel pretty lost in my knowledge of Cerebral Palsy.

Apart from adoption, the biggest hurdle for us has been her mobility issues. The first time we saw a physical therapist we were told they expected her to be doing worse since Nina had never seen a therapist before, while at the same time, our therapist had never worked with a child that was as hard and tight as Nina. Sometimes trying to stretch her is like trying to bend a block of wood by just pushing on it.

Even now, after 5 months, stretching her requires a lot of strength. There are times I cannot even flex her feet with my hands. I place her foot on my shoulder and lean into her so I can get her foot to flex.

Nina's Cerebral Palsy is called diplegia (the first picture in the diagram below.) And while her arms and hands are somewhat affected, she has full use of them and this rarely affect her movement. The times where her arms and hands are affected are when Nina is scared, nervous, or angry. During these "episodes" all her body is affected and as I have described it before, she turns into a wooden board and has no balance or control of her body. At these times she aquires a "curled" position. However, this seems to be more of a behavioral issue or a coping mechanism.
(If I am not using the correct terminology here, please correct me! As I said, I am just learning about CP.)

We have a great walker and we have great AFO's (leg braces.) The problem is that no matter how often we stretch, her legs and feet are still very tight and curled. Her AFO's work for a while, but after a period of time, her feet will shift and regardless of the many straps, the heels are up and we have to take the AFO's off in order to reposition her feet. Something that requires time as it takes a while to be able to stretch her feet to a 90 degree angle and we both can only do it so many times a day. As you can see, her heels are really "up there."

In light of this, we are going to try Botox. Botox has been used successfully in individuals with Cerebral Palsy when injected in the affected areas.

Cerebral palsy is a result of brain injury. What Botox does, is "numb" the nerves that signal the brain to contract. Because of the injury, the brain is not able to signal back telling the legs to relax. Once the nerves are "numb" there is no signaling to the brain. Does that makes sense? If it does not, then welcome to my understanding of this! I told you, I am just learning!

Needless to say, we are hoping that the Botox injections will help Nina. We have explained to her that it might hurt a little but it will help her heels touch the ground. "Like Ellie and Nichole?" she asked.

But Nina is a smart little girl, she asked one more thing, "Nina walk?"

We hope so, we hope that this will be a step forward towards achieving some independent mobility. We are well aware that walking independently might be a few years down the road, but we also know that she is capable of moving around with her walker, and eventually maybe just by using crutches.

Nina wants to walk like her sisters. Personally, I cannot wait to see all three of them dance together, all three girls with their unique abilities.


  1. I have heard great things about botox treatments for cp. hope it works fabulously for Nina. I was hoping they would try it for sophie but not yet.

  2. Hopefully the botox will be the answer! Looking at how tight her tendons are in the picture, it may end up that you'll have to do a combination of botox and tendon releases down the road, but I think the botox will give you a really good idea! I'll join you in prayer that she has good results from it!

  3. Very interesting post. I know next to nothing about CP and didn't know that her muscles/limbs had to be exercised. I also didn't know Botox had another purpose, so I hope it works for her. I, too, would love to see her dancing with your girls :-) I love how quickly she's picking up English... that's wonderful!

  4. thank you for your sharing. this blog is nice.


  5. I used to nanny two children in Chaska. It wasn't until half way through the second summer that I nannied them that their mom said she had CP. She was in a LOT of therapy as a child. I couldn't even tell she had CP although on second thought I admitted that sometimes I thought she walked a little "hard" esp on their wooden floors. She's a graceful woman and sometimes I just thought she stomped her feet a bit when she walked. It didn't bother me and I didn't think much of it, I just noticed. Her first daughter is her own and the 2nd is adopted. She only wanted one child b/c she had so many fears about her children having problems at birth and having CP. It was very hard on her as a kid but it is also amazing that few people can tell today. She's a very successful person and she parents in a very diligent and purposeful way. I still think about her when I am considering what to do with Madelyn. I haven't talked to her in awhile but I sure do miss their family!

  6. Dear Ellen,

    My name is Nicole, and I have loved following along with your journey to sweet Nina. I wanted to share with you that you are doing a wonderful job supporting each of your daughters in their individual strengths and needs. I am a special education teacher and have worked with many children diagnosed with CP and I wish that even half of my parents educated themselves like you have. I have worked with students that have had wonderful success with Botox therapy and I have had others where more extensive treatment has been required (ie: tendon releases or rhizotomy) . I wish you, your family, and sweet Nina the best of luck with the Botox therapy and I look forward to following along with your journey.


  7. Botox is made from a natural poison botulinum town called Clostridium. At high doses it is toxic, but in small dose injections, it can prevent the muscle nerves to transmit and receive impulses. When injected into a muscle, the muscle relaxes. In beauty that cause facial wrinkles and folds attractive to soften. The presence of deep wrinkles and folds of the skin gives you an idea of ​​how prolonged muscle tension can affect the body's tissues. In the case of muscles in the scalp, blood may put pressure on them to parts of the skull and cause pain. With inhibitory effect on transmission neuroligical, some issuers of neuropathic pain also inhibited. The overall result is a decrease in headaches.


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