Botox and Pressure Vests

We had Oksana's evaluation done at the spasticity clinic on Wednesday. She did fantastic. When they put the hospital bracelet on her she said it was cute and wanted to know if she could take it home! They asked a lot of questions about her, measured her range of motion, checked her from head to toe, did some activities with her to check her coordination, and watched her walk with and without her braces. She will also be getting a sedated MRI in the next 4-6 weeks. This will tell us exactly where the damage is to her brain. We are particularly interested in this because we have a suspicion that there may be damage in an area that affects her cognitively. Yes, she's made tons of progress but the reality is she is still VERY behind even compared to other kids her age or younger with CP who have been home for a shorter period of time than she has. It will be good information to have about her as we approach the time when she will go to school.

After all of their testing and checking it was decided that Oksana would indeed benefit from botox. She got her first dose (one in each hamstring) that day. They put some stuff on her to numb her skin. She didn't say much during the first dose but at the second one she cried a bit and said it hurt. All they had to do was say "treat" and she was a happy camper so it didn't last long. When you hear a doctor say "treat" you might think of a piece of candy or a cheap toy. Oh no, they came out with a Rapunzel doll and some bubbles! That's not a "treat" that's a birthday gift! She was thrilled! As soon as I saw Rapunzel I knew that beautiful hair would not last long in Oksana's hands. Sure enough within 1/2 an hour of getting her out of the box Rapunzel looked like she had been in a tornado!


She was sore for the remainder of the day but by the next morning she said she was much better. We go back in 4-6 weeks (hopefully the same day as the MRI) to see how the botox is working and if we are all pleased she will get another dose in 3 months. It was quite funny to hear her telling people she got "But-tox"!

What I'm learning about CP is that there are MANY different things that can be used to help. There isn't one thing that helps, it is a combination of things that can be used for maximum results, and what works for one person may not work for the next. This week Oksana's PT decided to try a pressure vest. Here is a picture of her in it:

A pressure vest is used for kids with sensory issues and muscle tone issues. It basically "hugs" her upper body and helps sturdy up the trunk muscles. She does not care for it but once it's on she doesn't complain. I can't say I've seen a huge difference. It's so hard to tell. I felt the same way about Kinesio tape. They said the combination of the botox with these other items may give greater results. Time will tell.

Questions, Comments, and Updates

From the "Stretching" Post:

Oh, seriously, she is just TOO CUTE!! Does she lay that nicely everyday?
Well basically yes. When she first started getting stretched she had a much harder time. She's even scratched and screamed at her PT during stretching. Once we learned how to stretch her at home and started doing it on a daily basis she started doing much better. Now when it hurts she will usually tell me and we will sing or count. She also will flip her head back and forth (I think to take her mind of of it).

Okay, I must admit -- I'm **extremely** curious about her speech/language abilities now! Do you have any videos of her speaking?
I've always wondered what she sounds like (i.e. if she has a heavy accent? Can you tell she's a non-native English speaker?)
I actually planned to post a video at the 6th month mark but after making the video I was a bit discouraged because I felt like it only showed how incredibly speech delayed she still is. But since you asked I tried to think of things that she likes to talk about and try to get her to give more than a one or two word answer for everything and I got a video of it. She was significantly speech delayed even in Ukrainian so we expected nothing less in English. I hope you can hear her on this. I tried to repeat what she was saying so it could be understood. I don't hear the accent anymore so I'm curious if any of you do.

Make an on-line slideshow at www.OneTrueMedia.com

From the "Kinesio Tape" post:

Thanks for all of the tips and help. She was taped again last week just to try again and sure enough it still came off fast. On Tuesday she will use alcohol first to see if that helps.

From the post about the r word:

I had to share this story. I was on the phone with a friend and I had no idea that she read my blog. We were talking and she told me that about something that she called "retarded" and then she immediately gasped in horror! I said "You read my blog!!!" We had a great discussion about it and I was so excited that she had caught herself thanks to my blog! You know who you are sweet friend and I love you, but I'll be keeping you accountable on this one ;)!

Stretching

I put this video together to show how Oksana is stretched each morning. I only showed a little bit. A full stretching involves each stretch I show done 3 times each for 30 seconds at a time on each leg. We stretch every morning as part of our morning routine. She had surgery on her heel cords and on her adductors in Ukraine.

Make an on-line slide show at www.OneTrueMedia.com

Botox Therapy

Well I can honestly say that I never thought I'd see the day that I'd be telling you about my 5 year old possibly getting botox. I should have learned by now that you should never say never! Botox, while commonly associated with a cosmetic treatment to make women look younger, can actually be benefical to people with cerebral palsy. A couple of months ago our PT approached me about Oksana being considered for botox. Her hamstrings are rather tight and just stretching her wasn't getting the range of motion we were hoping for.

If you are wondering how botox works, you aren't alone. I did some research and found out that the bacterium from the injection blocks the transmission of nerve impulses to the muscles causing them to relax. It only lasts about 3-6 months before you have to go back for another injection, but I've talked to a number of parents who have seen great improvement in their child with botox.

So.....on March 16th Oksana will go to the spasticity clinic at Arkansas Children's Hospital to be evaluated. They will do all kinds of stuff that I'll have to explain when I actually get to see it, to determine if she is a candidate for botox and if so which muscles would benefit the most from it. I'm anxious just for the evaluation to see if we can learn anything new about her. I'll be sure to post more after the appointment.

Kinesio Tape

Does anyone have experience with Kinesio Tape? I was just saying how there is so much to learn and here is another new one for me. On Tuesday Oksana was taped on her glute muscles. Here is a picture of what it looked like (taken as discreetly as possible since it is on her hiney :)! She is taped like this on both sides.


Kinesio taping is what atheletes use when they tape their muscles and it is apparently used often for people with CP. Here is a description from Gillette Children's Specialty Healthcare.

Each day, our muscles extend and contract within a normal range. If muscles overextend or overcontract, however, they’re unable to recover, and they become inflamed. When a muscle is inflamed, swollen or stiff, the space between the skin and muscle is compressed. This compression constricts the flow of lymphatic fluid, causing myalgia, or muscular pain.
At Gillette Children’s Specialty Healthcare, we use Kinesio Taping® as an adjunct to regular therapy to treat inflamed, swollen and stiff muscles that result from brachial plexus injuries, torticollis, cerebral palsy, postural abnormalities, and muscle weakness.

Kinesio Taping works much like a therapist’s hands to:
Reduce muscle compression
Increase circulation of lymphatic fluid under the skin
Improve muscle function
Reduce pain
Enhance sensory awareness
How Kinesio Taping Works
Latex-free, elastic Kinesio® Tape is applied along the length of a muscle as the muscle is stretched. Applied at the end (insertion) of the muscle, it relaxes muscle contractions. At the beginning (origin) of the muscle, it promotes muscle use or contractions.
Unlike conventional athletic tape — which is used for a short time to restrict movement of affected muscles and support joints — Kinesio Taping lets people move freely and prevents over-stretching. In addition, athletic tape is applied in layers that obstruct the flow of lymphatic fluid. Kinesio Tape is applied either as a single strip or in the shape of an X or Y. Rather than restricting circulation, the tape improves it.
Kinesio Taping is inexpensive. The tape is comfortable to wear and can stay in place for three to five days, even when wet. Parents or caretakers can be taught how to apply it. There are few side effects, although it sometimes irritates skin.

I can't say I fully understand this whole concept but I'm trying! The problem we are having is that the tape will not stay on her skin. Before taping her the PT put a small piece of tape on her stomach to make sure she woudn't have an allergic reaction to it. She said in 24 hours we should put her in a bath and use baby oil to get it off. Less than 24 hours later it came off completely on its own. I told her this and she was a bit surprised to hear that. She said that maybe her skin was oily. She thought a larger piece would stay on longer. It did, but not much. She was taped on Tuesday. I was given instructions to keep it on for 3 days (we were told that she could have a bath with it on, which she did) and then on the 3rd day we were again told to put her in a bath and remove it with baby oil. By Wednesday both pieces were almost completely off. I ended up just removing them. I'm curious what the PT will say about this. I'd love to hear if anyone out there has any thoughts on this.

This says it all....

Today is the annual Spread the Word to End the Word. That word is retard(ed). I will confess that I used this word until I was in college and a professor made us document how many times we heard it and how it was used. I was never the same after that. Now hearing the word makes me cringe. Some people use it still believing they are accurately describing people with intellectual disabilities, and not to be mean or rude. In fact I was told by a doctor in Ukraine that Oksana is "mentally retarded". I'm not out to slam those people for not knowing that there is a new PC term but I do think we need to educate them. I am, however, out to slam those who use the r word to insult people. It's rude, it's ignorant, and it degrades a whole lot of children and adults who I love dearly. This video says it best:

March is Cerebral Palsy Awareness Month! The common theme I'm seeing in the blogs by my fellow mamas of these wonderful children is that we all have a lot to learn. I've worked with lots of amazing kids with CP. I've been their babysitter, their camp counselor, and their teacher....but there is nothing like being the mother of a child with CP. I've never found so much joy in seeing a child get a sock off, and I've never felt so much pain from a fall at a playground. I've never met more amazing people than the parents of children with special needs. They have blessed me on my short little 7 month journey. They have taught me so much about CP, about life, and about love....and I have so much more to learn!