Cerebral Palsy Awareness: Symptoms and Diagnosis

Even though my cerebral palsy was most likely developed in the womb, I wasn’t diagnosed until I was two years old. The floppy and hypertonic muscles and movements of babies with cerebral palsy are so similar to that of any other newborn that unless it is a severe case, it isn’t noticed until months down the road, when developmental milestones are missed, or something seems ‘not quite right’. Even then, doctors want to rule out other possibilities before making a diagnosis.

After interviewing my parents, this is what I learned about how they found out I had CP:

I wasn’t crawling until  about 10 months, but when I ‘crawled’ I just pulled myself with my arms and upper body, and my legs dragged behind.

IMG953060

Since some babies learn to crawl this way, my mom didn’t think much of it. My dad wondered if there was a problem, because the muscles in my legs always seemed tight and contracted, and my feet and toes were always pointed down.

In this pic of me, about a year and a half old, notice how my feet are pointed down. I am unable to rotate my ankle to point my toes voluntarily.

In this pic of me, about a year and a half old, notice how my feet are pointed down. I am unable to rotate my ankle to point my toes voluntarily.

My mom noticed had more trouble with my left side.

As I try to crawl, notice how I am not supporting my left side and well as my right, so I look 'lopsided'.

As I try to crawl, notice how I am not supporting my left side and well as my right, so I look ‘lopsided’.

When I learned to stand I always stood on my toes. When I learned to walk a long time after, I walked on my toes. Since my mom walked on her toes when she was young, she didn’t think much of that either. But when it seemed to be getting worse with time instead of better, they became concerned.

It should be noted that I have a mild case of CP. A lot of babies’ symptoms are much more obvious. Still, unless the baby has a severe case, it probably won’t be noticed until the baby starts trying (or should be trying) to get around on its own.

One of the tell-tale symptoms is a failure to reach developmental milestones, like pushing up, crawling, and walking. Other symptoms can be:

  • Continuing primitive (newborn) reflexes after 6 months of age [americanpregnancy.org]
  • Muscles that are abnormally stiff or floppy
  • Lack of coordination
  • Tremors or involuntary movements
  • Writhing movements
  • Preference and better use of one side of the body
  • Drooling (beyond appropriate age)
  • Trouble with sucking, eating, and swallowing
  • Speech difficulties

[mayoclinic.com]

The symptoms depend on the type of CP, which depends on the part of the brain that was damaged. The severity of the symptoms depends on the extent of brain damage. Most of these symptoms would be difficult to see in a baby, which is why CP is normally not detected until between 1 and 3 years of age.

In my case, a diagnosis was a long, winding road, but here’s the short version:

My mom remembers taking my grandma to her foot doctor when I was a little over a year old. The doctor played with me a little and then continued with the appointment. When my mom put me on the floor to crawl around, the doctor noticed I didn’t crawl quite right. With permission, she picked me up and tugged on my legs a little. She mentioned to my mom that she might want to take me to a doctor. The first doctor thought it was an orthopedic problem and tried correcting it with casts. My family saw that it wasn’t helping, and they contacted Shriners Hospital. The Shriners doctors started by coming to my home to measure my legs and flexibility. Following that, they did cat scans, reflex testing and other tests. They hooked me up to electronic impulse wires; wires that read electronic impulses from my brain and muscles, and analyzed them with a computer. My mom remembers that they hooked me up to these wires and had me walk down a long, black mat. On the computer all you could see was my skeleton walking. Finally, at two and a half years old, they had a diagnosis.

That, of course, was 25 years ago. Today, maybe a diagnosis would come sooner. I could be wrong, but I think doctors now are more aware of CP than they were then. And they might not use all the same methods. My mom doesn’t remember exactly all the tests and scans they did. I don’t know how closely growth milestones were monitored back then, or whether a pediatrician today would recognize the subtle signs of my CP during a routine checkup. I don’t know if they still use the electronic impulse wires, but I would love to see that! I do know that they use MRI’s and CT scans, as well as flexibility and reflex testing to help in making a diagnosis.

Along with my diagnosis of CP, my mom was told that I would never be able to run or jump or ride a bike. But she and my family didn’t just take the doctors’ words regarding my future and my abilities. They let me decide. And they helped me achieve my full potential. So when you or family member or friend receives a diagnosis, and the doctor tells you what to expect, respectfully thank them, and then do everything you can to overcome the odds. Let God decide what you are capable of.

Jump rope was one of my favorite things to do as a kid... despite the doctors saying I would never have the capability.

Jump rope was one of my favorite things to do as a kid… despite the doctors saying I would never have the capability.

8 responses to “Cerebral Palsy Awareness: Symptoms and Diagnosis

  1. This was a great post. I look forward to following your blog – and thanks for finding me so I could find you. It will be amazing to watch your journey being as I am your mother 25 years ago with my own son. Only I saw it coming from birth trauma. My how medicine has changed in 25 years!

    And you were an adorable kiddo!

    • Thank you! I found you via Facebook actually – I follow Andrews Angels page, and she shared your page. I love seeing how new medical advances have changed the possibilities for kids with CP and other disabilities! I just set up accounts for My Disabled Life on Facebook and Twitter, so if you’re interested, find them and follow me!

  2. Hi Ali! I was doing a search to find out some physical therapy exercises I could do myself. My story sounds exactly like yours! No kidding! Well except Im a little bit older(33)..lol I also have hypertonic in all of my limbs but my right side is a lot worse then my left. My doctors also told my parents that I wouldnt be able to walk, jump rope,skate, or ride a bike! I could jump rope when I was younger..I can kinda skate (holding the wall) but I ride my bike everyday!! A regular bike,with 2 wheels! I add that because usually people assume I ride some modified one. Also I am married with a nine year old daughter. With whom I gave birth to naturally with no drugs! I believe that I have gone well beyond what the doctors thought I could ever do! As I get older it does seem that im getting stiffer. Im currently looking for ways to help myself without the use of medications.. If you know of anything please let me know. Loved your story! It hit real close to home! Thank you

    • Hi Erica! So, if you’ve been searching, you’ve probably run in to the same problem I had: There’s a lot of information for your child with CP, but next to none for an adult with CP. That’s a lot of why I’m writing; to help other adults with CP (and other disabilities know that they’re not alone, and to help them find solutions that work. Both of my deliveries were also natural (and very fast), but they told me I should have an epidural because of the spasticity in my legs. I obliged, but I’m not sure I wouldn’t have done it anyway. You are brave! Also, I have to be honest in that I do use medication as part of my treatment. I used to be very good at ignoring the pain, or most of the time not even realizing I had any. When I started therapy again a couple years ago, we did a lot of practicing with recognizing pain and the triggers that caused it. Since then I definitely notice it. It used to bother me that I took medicine, but one day I realized it was either take the medicine and have a happy life with your kids, or don’t take it and lay in bed all day. I do have some stretches and exercises I do that help a lot, as well as noticing and correcting my posture and stance throughout the day. I admire you wanting to keep it natural. I’ll do some research and see what I can find. I will be doing a treatment segment in my CP awareness series so stay tuned! Also, if you have a facebook account, there is a page, Andrews Angels, about a 6 year old with CP and how some non mainstream treatments are actually healing some of his symptoms! I don’t know if any of that would work for us oldies 😉 but it is still very interesting. Also, it’s awesome you can ride a bike! When my little brothers were two wheeling before me, I got embarrassed and gave up. My husband and daughter want to help me learn now, but I’m too scared lol! Maybe I’ll do it and blog about it…
      Ttyl!

      • If you dont mind me asking what do you take? I have been put on baclophen but it didnt seem to do anything so stopped taking it. Dont be scared to ride a bike! My younger sister rode one for years before i could fully do it! I have so many scars from falling but was so mad that she could do it and I couldnt! Now I ride with my daughter everyday..Never give up!

      • The only thing I take on a regular basis is hydrocodone for pain. It doesn’t make it totally go away, it just takes the edge off so I can have fun with the kids or get stuff done. Before that, I used to pop ibuprofens all day long, which weren’t really helping. When I told my doc how many I was taking, he freaked out and said I was killing my stomach and kidneys and prescribed me the hydrocodone. I was really grateful because it helped a lot more. I also have a muscle relaxer (methocarbam? Something like that.), but it kinda knocks me out, so I don’t take it unless I really, really need it.
        That’s a cool story about learning to ride your bike. It’s funny, the older I get, the more afraid I am lol. Maybe it’s time to strap on a helmet and some elbow pads and give it a try…

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