Cerebral Palsy - My Child's Story - Some Facts and Misconceptions

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Jul 14, 2003 (Updated Jul 16, 2003)


The Bottom Line You can't always tell that someone has a Neurological Disorder by simply looking at them.

Before I go into anything I must say that I'm not now, nor have I ever been, nor do I ever plan on becoming a Doctor. What I write here is simply my child's story of Cerebral Palsy as well as some basic information about this Neurological Disorder. Any information I may give is not meant to be a recommendation for anyone else going through something similar.

My only motivation for writing this and sharing such a personal part of our lives is in the hopes it will help even one person to understand or help one parent to take their child to a specialist or to see they're not alone.


May 2002 - We visit the Speech Therapist and it all begins......

It was the beginning of May 2002 and my mother in law was worried about my son's speech. I thought that a bit odd as for once I was no longer concerned. He was a rather late talker, he didn't fully start talking until the age of 3 at which point he spoke in complete sentences. Between that point and May 2002 he'd had nearly a year and half of speaking all the time and very well. He'd developed a rather large vocabulary so all was well in my mind. Granted he'd say some letters incorrectly, but I felt pretty sure it wasn't anything that wasn't considered normal at his age of just under 4.5 years.

But, Mother in Law was worried and my husband was also concerned. He seemed to think our son should be able to speak perfectly since he would be turning 5 in seven months. I humored them and made an appointment. The evaluation would be completely free* and would be held at a local Elementary School; the Speech Therapist worked for the district so many schools in the area shared her. Our appointment was set for May 22, 2002 at 2:00 pm. We went and although I had been feeling confident before, I was starting to wonder if my Mother in Law and husband were seeing something I wasn't. We'd know soon enough.

The evaluation went quickly and once over, my son was told he could go play with some of the toys she had in her room. While he was playing, she and I talked. She told me that his speech was fine and was rather surprised that he had been a late talker; because he was a late talker she was impressed with his speech as he was more than where he should be for his age. Yes, he didn't say every letter combination correctly, but she showed me how he was not considered behind in his speech and would not be unless he made no improvement by the time he was 7-8 years old. She did recommend we get his hearing checked just in case that was why his speech had been delayed. She gave me information on how and where to get that done and mentioned that while she recommended we get it checked, she highly doubted hearing was an issue since he had caught up so quickly with his speech.

And then it happened.

Going beyond her job as simply a Speech Therapist she started talking to me about things she had noticed about my son. She noticed he was walking on his tip toes and that he held his hands a certain way. She noticed he clenched his fist for no apparent reason. She asked me about that. I told her that he'd been walking on his tip toes for years now, that his Pediatrician knew about it and told me it was normal. Her response, "It's not normal." I then told her that when he was 1-2 years of age his hands and arms seemed to be suspended in mid air, bent at the elbow. She just looked at me. I would later find out from a Pediatric Neurologist that they call that the "Teddy Bear Pose"; it's a classic sign of Cerebral Palsy. The more we talked, and we were only there for about 25 minutes total, the more convinced she was that we needed to take Brandon to see a specialist. Her words, "You need to get this checked out." She gave me the name and number of a Pediatric Neurologist and said she'd do any referring we needed and if I needed anything else to just give her a call. She wouldn't go into anything when I asked her what she thought was going on. I understand that now, but at the time it left me feeling a little crazy. When I relayed everything to my husband that evening he seemed pretty confident that nothing was wrong with our son, but was all for getting things checked out just in case.

* I don't know how things are in other states in the USA, but in California it is possible to get a child's speech checked out for free (and hearing, too). There are no qualifications that have to be met. All one must do is find who or what organization does it near them and make an appointment.

June 10, 2002 - We see the Pediatric Neurologist and get a diagnosis

The next day I called to see about making an appointment with the Pediatric Neurologist. I ended up not being able to make an appointment for a few weeks due to some insurance problems. Things were finally cleared up with the insurance company and we had our appointment. It was set for June 10, 2002 at 3 pm.

During the weeks between seeing the Speech Therapist and the Pediatric Neurologist appointment I spent a good deal of time looking at things online, reading various articles and talking to friends. I wanted to get some sort of idea about what was going on since Neurological was all I knew. I wanted to have some sort of idea as to what the Pediatric Neurologist would say as the span of Neurological problems is enormous and rather frightening. The one constant comfort I felt was that no matter what the diagnosis was, Brandon would be the same child, the same person. No diagnosis would change who he was.

My son and I arrived for the appointment, shortly after we got there the Pediatric Neurologist came out and took us back to his office. We sat there and he and I talked for a good 90 minutes. He wanted to know everything about my son, from his birth to how things where currently. He wanted to know my son's entire medical history. He asked about any illnesses, problems, milestones, development, etc. I talked, he listened. From what the Pediatric Neurologist had heard from me, from what he'd seen by watching my son in his office and from what the Speech Therapist had said in her referral, he was fairly sure it was Cerebral Palsy. Before giving the final diagnosis however, he needed to perform a physical exam. So we went into the next room and he gave Brandon a good overall check up and then some. He had Brandon do several things to test his gait and coordination. He tested him to see how strong he was and made every test into a game. He was so wonderful with my son I could hardly believe it. Here it was, possibly the hardest physical exam my son had ever had and it was the first Doctor's visit that wasn't filled with fear and tears. When the physical exam was over, the Doctor gave me the final word. My son had Cerebral Palsy. It was a mild case; but he did have it in all four limbs.

We've got a diagnosis, what does it mean exactly? Now what do we do? How is Brandon? What does the future hold?

The recommended action for a child with Cerebral Palsy can and will vary a great deal as "Cerebral Palsy" is used to diagnose a vast range of problems having to do with brain damage/trama. To give you an idea of how varied each diagnosis of Cerebral Palsy is, here's some information about Cerebral Palsy.

There are different types of Cerebral Palsy: Pyramidal/Spastic (80% have this), Extrapyramidal/Choreo-Athetoid (10% have this), and Combinations of the two (10% have this). My son has combinations of the two. The type of Cerebral Palsy a person has depends upon where in the brain the trauma occurred.

Each type of Cerebral Palsy has its own set of symptoms and a person can have one or all of them. From there, a person can have varying severity of each type of Cerebral Palsy; and it's possible to have it in one, two, three or all four limbs as well as have it affect additional parts of the body. The final diagnosis for my son was Bilateral Athetoid Cerebral Palsy (athetoid has to do with low muscle tone and involuntary movement) / Diplegia (Spastic Cerebral Palsy in legs).

For my son, the Pediatric Neurologist showed me some exercises to do with Brandon every evening and he told me to buy my son some high top shoes which would not only offer him more support but would also make it more difficult for my son to walk on his tip toes. He told me that for now that's all we'd do but that once Brandon started Kindergarten, if he was still walking on his toes the school might have a problem (which he did not mean as a bad thing) and would want to put Brandon into Occupational and or Physical Therapy. He gave me an RX for OT/PT right then and there.

He told me that my son, as I could now see (love that hindsight), had already grown out of some of his Cerebral Palsy and that he would continue to do so until it wasn't detectable to anyone [right now it is really only detectable to those who know the signs and look for them]. He said Brandon would probably never play football, baseball or basketball as it was most likely that he would never be able to run properly enough to do so. He told me to get Brandon into swimming and martial arts and that Brandon would probably excel at both because of his Cerebral Palsy.

Brandon is a very happy, healthy, strong 5 year old who is going to start Kindergarten on August 4, 2003. He knows he has some problems that other children do not because his father and I have told him. At least he knows in his mind; he doesn't fully seem to realize in his heart that he is different as he doesn't see it and neither do other children. I've told him that other children's legs do not hurt after a long day at the park only to have him look at me like I am a crazy woman. In his 5 year old mind, if that's the way life is for him and he is normal, it must be the same for every other child, too. Normal for him is sitting on the couch being quite the day after a long day at the park. He doesn't complain of the aches or pains as sadly, it's just part of life to him. As he gets older I'm sure he'll realize more how his body is different, how he has to unknowingly work harder than the other children to do things and how no matter how hard he may try, he simply may not be as good, physically as they are at some things. Until that time, he is just happy being an innocent child.

Brandon had some work done on his teeth last month (June 2003) and he had some laughing gas to keep him calm. While still under the influence of the laughing gas he had to use the bathroom. His muscles were completely relaxed so he had less control over them. As he and I walked to the rest room, he wasn't simply dizzy as any other child would be, he was highly unstable and just could not control his arms and legs. His arms were jerking around and his legs were going every which way. It was then that I really saw how much he had to work in order keep his muscles under control, day in, day out.

We do not know what exactly the future holds, but then who does?

Symptoms of Cerebral Palsy:

The specific symptoms my son currently has:

- toe walking
- arms being raised/suspended in air
- bending arms often unknowingly
- clenches fists unknowingly
- generally a klutz/lacks coordination
- while outgoing always very cautious about many things involving his movement
- legs hurt after what would be considered a normal amount of activity for other children
- legs are very tight
- takes effort and hurts to stand/walk flat footed/normally

Other Possible Symptoms of Cerebral Palsy:

- poor muscle control which can result in drooling and or incontinence
- Teddy Bear Pose
- problems eating/swallowing
- problems with the senses (speech, hearing, touch, sight)
- seizures
- anything else that is caused by muscles being too tight
- delayed motor skills
- developmental delays
- mental disabilities

Misconceptions of Cerebral Palsy

After our son got the diagnosis of Cerebral Palsy we were faced with many questions from caring family and friends. It was then that I saw how little the average person really seems to know about Cerebral Palsy. I'm going to list some of the questions we were asked and the answers to them.

- Is he ok? This one kills me. I know, people are just concerned but if they'd only stop to think, they wouldn't need to ask this. Just because Brandon was given a medical diagnosis for something, that doesn't make him any different than he ever was. If he was ok the other day when you saw him, he's ok today. Nothing has changed. It was hard for some to believe that for whatever reason.

- Does he need to take any medication? No, and there is no magic pill that will make the Cerebral Palsy go away. That is not to say others who have Cerebral Palsy won't need any medication for something related or non related. There are some medications which do seem to help the muscles and movements, but my son is not taking any of them.

- What tests were run to get the diagnosis? In our son's case he didn't have to go through any extensive testing as his medical history and physical exam was enough for diagnosis at his age. However, in some cases a CT or MRI may be done and on occasion, an EEG.

- When did he get it? This we really don't know. At first I was convinced he wasn't born with it, but now I'm not so sure. The more I read the more I think he very well may have been born with it.

- What caused it? We will probably never know what exactly caused Brandon's Cerebral Palsy and that's just how it is with many cases of Cerebral Palsy. He was greatly past due when he was finally born, something we didn't know until the c-section was happening. He was full breech (bottom first, not feet) and I'd guess that he had been that way for the last 2 months of my pregnancy. Cerebral Palsy occurs because a person experienced some sort of brain trauma or damage; the brain trauma/damage can occur at any time during ones life span. In many cases there may never be any definite answers as to what exactly caused the brain trauma though many things are suspected. Such as the mother having an infection when first pregnant; use of a vacuum during delivery; the baby showing distress during delivery and not being delivered quickly enough; stroke; seizures; Mother's RH incompatibility; lack of oxygen; lack of blood; the fetus brain simply not developing properly; and the list goes on.

- Will he be ok? He'll be as ok as anyone else - I hope.

- Is it going to get worse or better? Cerebral Palsy doesn't get worse; if someone has Cerebral Palsy and then starts having more trouble then they were, something else is going on and they need to get things looked into ASAP. Generally, with treatment and lots of hard work, Cerebral Palsy can and will progress to be better. How much better depends on a great many things.

- What does he need to do? This question was asked as many seemed to think something huge must have happened because Cerebral Palsy is this big, bad, ugly thing in their minds. For many, getting a diagnosis may mean the start of some serious life changing things, (possibly among them Occupational, Speech, Physical, Surgery, Medications, etc.) but for us, it meant we needed to add some stretching exercises to our nightly routine. Over time it may mean something else, but for now, that's it.

- What does it mean? All having a Cerebral Palsy diagnosis means is that we now have answers as to why Brandon did and does certain things. It means sometime in his life his brain experienced some sort of trauma. It means the control he has over his muscles isn't the same as what you and I may have. It means some things are harder for him to do. It means he may need help doing things that others take for granted.

Try not to classify those with disabilities as you'll be wrong more often than you're right. Try not to assume and do your best not to treat those who are different from you like aliens. All most people want is to be treated like everyone else. Taking that along with knowing a person can have something going on with them and it doesn't have to scream out at you or hit you in the head. They may appear to be perfectly normal (whatever that is). Just because you can't see it, doesn't mean it isn't there. Please, don't look at a child and assume they should be doing such-and-such a certain way just because they appear to be "normal" and are a certain age. Please, be aware that children are highly sensitive and nothing you say or do can hurt their parents as much as it will hurt them.

Written with heartfelt thanks

I feel I owe the wonderful D. E., the Speech Therapist we saw, the world. I hope she fully realizes how much we appreciated her going above and beyond the call of duty as it was not her job to notice any of our child's problems outside of speech. It was not her job to refer us to a specialist and it certainly was not her job to recommend Preschools for our son.

Dr. D. T. H., the Pediatric Neurologist we saw renewed my faith in Doctors which had been destroyed from years of working in the Medical Field as well as our experience with our child's former Pediatrician (Dr. Your-child-is-normal-don't-worry). He is an amazing individual and a fabulous Doctor. I love him for giving us a diagnosis. It feels like completion in many ways. I love him for giving me his cell phone number so as to be available to me, for my son, whenever needed.

We have found a replacement Pediatrician for our son, whom I make mention of in my asthma editorial. Dr. T. D. is another of those truly great human beings who has done us a service by becoming a Doctor.

To all of you who work in the Medical Field who are willing to help, to listen, to go above what you have to do.

And last, but not least, to all of you on Epinions who offered your hearts, your minds, your support, your comfort while our family went through this difficult time. There were many who helped me research things online before we saw the Pediatric Neurologist. There are many who to this day are there for me when we have a hard day and my sons legs are hurting him. Your kindness, your friendship means the world.

Thank you!




Links to check out for more information:

NINDS (National Institute of Neurological Disorders and Stroke) Cerebral Palsy Information Page (lots of basic info)
http://www.ninds.nih.gov/health_and_medical/pubs/cerebral_palsyhtr.htm

American Academy for Cerebral Palsy and Developmental Medicine
http://www.aacpdm.org/home.html

United Cerebral Palsy of New York City, Inc. (for CP news)
http://www.ucpnyc.org/

Cerebral Palsy - Ask the Doctor
http://www.about-cerebral-palsy.org/



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