Monday, March 30, 2009


Today is the last day of CEREBRAL PALSY AWARENESS MONTH.

I wish I had all the answers to the many questions about cerebral palsy. I still have SO much to learn. Not only about CP but what I can do (or have Cole do) to improve his quality of life.

We have an appointment on May 4th for botox to be injected into Cole's hands and arms. I have been spending whatever time I can trying to research everything I possibly can about this and how it works with CP.

When we first scheduled this I had done 'some' research. I had talked to several friends that have children with CP and have tried it. Only one informed me it didn't not have an affect one way or the other, the others have only given praises stating how it has improved their child's mobility.

I felt pretty confident that this was truly the right choice for Cole. I was a little nervous about him being under anesthesia. This was more because of the bad memories/stress that I felt seeing him hooked up to machines and being monitored in the NICU than because of the botox itself. I also realize there is some danger with anyone going under anesthesia (otherwise why would they ALWAYS make you sign the release papers).

Well, this all changed when I bumped into a very sweet dear friend. I truly value her opinion and I know she would never give me ill advise. Her grand baby twin girls were in the NICU with Cole and we knew her son (the twins dad) BC (before children).

When I explained that we would be going in for botox she was very concerned and said she would NEVER let either of the girls receive botox. She explained a situation that had awful results from botox and all the research this affected person had done. She simply told me what she knew and begged me to please do my research. I know it was not her intent, but now....


It is a LOT of responsibility weighing on my shoulders right now. I have to determine if the good out weighs the evil. Do I pull back and NOT get him the botox because I am afraid? Afraid that this could paralyze him forever or that he will be in pain with no way to let me know? Would this take away his opportunity to be able to use his hands and arms?

Or, do I take the risk so that maybe he can push up and start to crawl? Would this be just what we need to loosen his tight spastic muscles so he can learn to feed himself or hold a toy and actually be able to bring it to his mouth? If we can accomplish this then maybe he could introduce new textures to his mouth (by putting all the things we think he shouldn't into his mouth)so we can give him solid instead of pureed food.

I have spoken to two neurologist (both from a very well known and well praised center and I have only heard good things about these doctors), Cole's pediatrician, five of his therapists, a LOT of my friends, the internet and God!

I don't know how to weed out my feelings to determine if it's God, my mother's intuition, or just me wanting to take advantage of every opportunity for even the slightest chance for improvement for my baby. My thoughts and concerns are completely jumbled.

I would love and appreciate if anyone reading this has an opinion, facts, or even a personal story (results from botox) to tell regarding botox injections for cerebral palsy, whether it is good or bad.

The way the botox works for cerebral palsy is it partially paralyzes the stronger muscles giving children an opportunity to stretch and strengthen the weak muscles. Injections and physical therapy will help the child achieve better muscle strength and balance.

Cole's therapists have said by loosening the tight (spastic) muscles they can be more productive in what they are trying to teach him and it will help him gain confidence (therefore making him a happy baby with less frustrations). This will also hopefully help him want to try harder since he will be seeing results.

Not every child will benefit from botox injections and only a set amount, depending on the child's body size can be given. This is why we will only be injecting (if we do) his hands and arms. They are the most spastic and although he does have tight hamstrings, he still has a beautiful step and he loves to walk in his KidWalk.

So, please, leave your comments. Give me any information YOU may have. Tell me what you would do if it were your baby. And feel free to leave me a link to your story or someone's that you may know.

see Seven Clown Circus


  1. have a big decision to make......I will be in prayer for you and Cole.....and of course, his doctors!

  2. I worked with a little girl that had Botox injections in her hands. I think it helped some for her. I will be thinking about you and Cole!

  3. Leanna, Botox is scary. Regan got her first injections around the age of three in her legs, and in her hands. The results were stunning. She could make so much more progress in her therapies, because of how her muscles were able to work better and not conflicting each other. We were so impressed with how Botox worked for us that I began to research SDR (Selective Dorsal Rhizotomy...which is like permanent Botox....and she is just been a different child. SHe can work better and harder on what she needs to focus on, and not fighting against the spasticity is wonderful.

    Have faith that you are doing the right thing, and know that all of us question ourselves to the point of tears when trying to make medical decisions for our CP children, that cannot make them for themselves. Please feel free to email me with any questions you might have...or tips and strategies. Good Luck, and Bless you!

  4. I don't have any light to shed on this for you but I will pray that you make the right decision. :)

  5. Girl, if I've learned ONE thing about raising children is that God gives us a mother's intuition for a reason. You follow it!

    The times I've listened to what I was feeling were a good thing.

    As long as you are asking for God's leading on a situation I believe HE will be FAITHFUL to see you through it.

  6. I wish I had something good and helpful to tell you. Honestly, your experiences now will probably be what I'll look at in a few years if this comes up for us. If its anything like our household, mom is basically in charge of the therapy related decisions. I will just be praying that you can come to a decision that doesn't scare the pants off you. Keep your pants on! {{hugs}}

  7. Of the many of my former patients who have had Botox injections into their limbs, none have had detrimental or dangerous responses. Most have the kind of results that Christine shared. Some have had relatively little benefit.

    Just like a surgeon, I think the skill of the physician for giving the injections is a factor. Confidence in the physician via your 'gut' (intuition) and via reports from other parents who have allowed him to inject their children.

    Anesthesia is important during the injections. Formerly not provided, the pain of the procedure was part of the difficulty of the decision.

    Only you can decide. 8 responses is good on a call like this.

    I will make a bid for reading my recent post titled "Bone Connections".

    Barbara - both PT & OT

  8. Wendy says...

    I typed "www.botex.cerebral palsy on google and came up with a lot of information on botex and treatment for cerebral palsy.I understand it now. I'll be thinking and praying for you and Cole and that he will begin to crawl and walk! Good luck!
    John and Wendy

  9. I just love that picture of you and Cole!!! You guys are so precious. Wishing you so much love during your recent struggles :).

  10. I don't know anything about Botox and CP, hun. I can only pray for you that God can help you make the right choice.

  11. Oh, Leanna! That had to be tough. What's happened since?