Thursday, January 19, 2012

Our Son Has CP

A sentence that has always been true, but something I have never really let myself believe... or accept.

This is a long one, so I thank you in advance for letting me vent my fears and frustrations. :)

Until this week, I think I was of the mindset that since our son's Cerebral Palsy was relatively mild, that someday he would just... simply grow out of it. That once he was old enough to make a conscious choice of movement, that he would be able to overcome the slight tightness he was experiencing. Silly, yes, but I never realized I had that thought until this week. Since the diagnosis, we have been presented with a myriad of options regarding treatment, some doctors actually advising us to do nothing. Let it go. It's so mild that yes, he will walk with a slightly abnormal gait, but he will be a high-functioning adult, so why put him through anything dramatic to make him better?

It's a hard thing, being a parent. It's hard to make those choices for him, by proxy, knowing it will affect his entire life - it can be quite paralyzing, actually. It's like I wish we could visit his adult self and ask him what he would want us to do, since it should be his choice, but he is too young to understand this now. Heart-wrenching is the best way to describe it. A huge weight. Make the non-choice to let it go or do little and let him possibly suffer compounded aging and asymmetrical grinding effects of his CP, condemning him to a wheelchair by the age of 50 by doing nothing? Or make the choice to do something aggressive now and, God forbid, experience a complication in surgery that renders his leg useless? To think of the worsts in each outcome, both pathways sound crazy.

When you hear so many people describe his condition as mild, you start to think maybe we should let it go... let him be a kid, without day-time braces and constant therapy, special shoes, extra sessions at school, nighttime struggles with those braces, hand-holding on slippery sidewalks, Botox surgeries that kill off his nerves so he can be stretched out more easily, electric shock therapy, casts...

Summer this year was the worst - keep his brace on and let him miss swimming, trampoline time, running next to his brother and sister, feeling the soft grass beneath his bare feet? I couldn't do it. He was overheating with that un-breathable thick plastic mold surrounding his foot and leg to the knee, getting tired so much more quickly and he kept missing out on things that we decided to keep it off for the most part.

So, since he is so mild - so mild he didn't actually qualify for summer PT and OT services for those 8 weeks according to the school district - we decided to let it go, and let him be a kid. He made it through, we felt a little guilty about not pushing the braces, but he loved every minute of his carefree summer.

Then, in September, we noticed he was walking more on his toe and less on the full bottom of his foot. We thought, with a little extra stretching, he would be fine - he would bounce back. It's just because he had some time off. But then he kept getting worse and worse, no matter how much stretching we did...and we started to get nervous. And when he started falling, his coordination faltering, his pre-school teachers and his PT and OT started to get nervous, I started to get a little panicky. Why isn't he getting better? Why is he getting worse? What are we doing wrong?

People ask us all the time if we have done the routine Internet research. I can tell you that I have exhausted many sleepless nights in the search for answers related to the best possible treatment. And what I have found through searches is just not suited for 1. A parent, as most pages out there are directed to medical professionals and hard for me to understand fully - for instance this wikipedia article, ouch. 2. Parents with kids who have mild CP - most pages aim to help parents of kids with severe disabilities and how they can care for them more easily. And honestly, the more articles I find, the more hopeless I feel about his original, maybe-it-will-go-away scenario. And as a mother, who just wants the best, most normal spring-board for her kids - it's a tearful realization.

I thought we had a semi-clear grasp on what CP really is, that (in his situation) basically the part of the brain that controls the contraction of the muscles in his right leg and his right hand was damaged at some point (due to lack of oxygen, most likely because he was a multiple birth preemie, though we will never know the actual why). A normal person with an undamaged brain can regulate the contraction and relaxation of these muscles, but his muscles are always contracted - think of your calf right now and make a muscle in it - hold it, and this is how his muscle is all the time. The nerves that go down to his right leg and his right hand are stimulated at the highest level and his brain cannot turn it on or off, offering no control of the muscle, just full on, all the time. You can also think of his situation as a light switch that can only just be on or off - as opposed to what a healthy person can do with a dimmer switch, any level of light control. This is called Spasticity.

We just found out recently there is another side of the coin, called Contracture. And this is what we are experiencing with Braden right now. This ugly phenomenon occurs when the bones grow faster than the tendons are pliable for and is basically what would happen to a too-small rubber band stretched around a pile of papers. No give at all. His PT basically described our summer as the Perfect Storm of conditions that lead to this contracture, and it is possible that it is permanent... and our fault. Since we did not stretch out the muscles, or keep his brace on over the summer, we did not keep them as flexible, pliable or elongated as they could have been. When his bones grew in a large growth spurt at the same time, we created the perfect conditions for an emerging contracture, something we didn't even know existed. Apparantly, we have to be on a constant vigil for this, especially now that he is on the cusp of a full-blown contracture that he would keep his entire life, non reversible. Game over.

Spasticity can be handled by a recurring injection of Botox - yep, the same stuff people use to stay looking young - in the areas his CP is most prominent. Braden has had this procedure twice. It basically does the same thing, kills off the nerves to the muscles that are overproducing the stimulus, so that they relax and can be stretched much more easily. Sometimes, you can actually make forward gains and get some flexibilty and strength back before the nerves regrow again and make those muscles tight once again. The other side of this picture is that the large muscles that are tight usually overpower the smaller muscles in his leg, and those small muscles could die out (atrophy) from under-use. Scary. Botox allows for a period of time for those muscles to be strengthened again while those larger muscles are "sleeping". :) But, it is temporary. A Dorsal Rhizotomy is a procedure that reproduces that Botox effect permanently. The neurosurgeon goes into the central sac of nerves at the base of his spine and clips the overproducing nerves at the root, permanently cutting off the over-stimulation. This is still something we hope to go through with him, but only when the contracture part of his CP has been addressed and is as controlled as can be. It won't work otherwise, and since it's such a big risk - a one-time only procedure, we need to be sure and ready. It can only happen in kids between the ages of 5 and 9.

Another procedure in helping with the contracture is a tendon release, a surgery where they make small slices in the contracted tendons to help lengthen and slightly release them. All scary stuff, especially when we consider these procedures for our "mild" kid.

The clinic we attended yesterday at Children's Hospital, called a Spasticity Clinic, is quite an awesome resource for those families who experience CP.  Many different disciplines are available to look him over and offer their observations, facts and opinions and they share them with each other at a round table discussion with the goal of coming to a consensus on the best possible treatment for him. They have a Physical Therapist, Occupational Therapist, Neurosurgeon and Physiatrist go over his history with you and watch Braden perform a wide range of tasks. They convene and return to sit down with you and discuss his performance and things we can do to improve his function as well as options for future treatments. If I think there is a fail for the medical community not having a better parents' resource for education on understanding CP, then this is the next-best thing, at least the best possible resource for advice on how to proceed, knowing you are in great hands. A great piece of the puzzle and a monumental resource for us struggling to make choices for our little guy. Yes, I wish there was a 411 for parents in layman's language about the pitfalls of the disorder and what we should be watching for, but this is what makes me have hope that we are heading in the right direction. I feel rightly guided even if we don't have all the information yet. The more you know, the more you know you don't know... and hopefully a pursuit of information can be the only result.

So, the outcome is hopeful for now... he will be casted, just as if he broke his foot. Stretched to his limit and a cast molded to his leg, and he will wear it for a few days in the hopes that it helps him stretch intensely and fully. Then a new and controversial brace that he will wear during the day will allow his smaller muscle groups to be strengthened in walking everywhere. At the same time it will stretch his larger groups and position his foot and leg correctly to minimize wear and tear. He'll wear a foot (not leg) brace on his left foot to keep his body and gait symmetrical. He'll wear night time braces in the hope that fully restful sleep will allow for a monster good unconscious stretch. :) We are also taking him to see my chiropractor to see if there are any bone shifts he can alleviate. And finally, building his endurance will be encouraged, enrolling him in a very noncompetitive soccer program, hippotherapy (horse therapy!), swimming or low-key tae-kwan-do. Anything that will get him involved, having fun, running around and building his endurance and confidence up, ultimately helping his coordination and balance too. :) I love to think of my little man in a martial arts uniform. Love! :)

A lot of information, and if you are still with me, I thank you. Many prayers were said for us yesterday, and I feel them all working today as our new plan settles in - more aggressive than we ever thought, but much more hopeful too.


Anonymous said...

Oh Cheryle, I'm a firm believer in the power of prayer! Sometimes when you place all of your cares & concerns in the hands of the Lord, he does provide. Keep praying about it, sometimes even though the way the plan is looking & it may not be the way you want it to go, but it may be the way the Lord wants it to go. It's a tough call. I can relate so well to your fears & concerns for you little man. You are all in our thoughts... Pamela F.

mima said...

B man is so dominant in his own personality like he already knows .you will guide him in your decisions on what is best and I know what you do will be in love and faith to be the best for him. If you looked into the future when our little man is grown he will look at you and say. Thank you Mom and Dad. I always knew you had my back!

Laura said...

I agree with mima, when he is a mature adult he will realize the power of a mother and fathers love and know that whatever decision you made was the one you thought was the VERY best! Enjoy that little guy! We love all of you! Stay strong <3

MJ said...

Thinking of you all Ch. Mima is right - B-man is a very strong little boy - stay strong and believe that everything will work out. I love you!!!

MJ said...

I also love the idea of him in a little martial arts uniform - cutest future black belt that ever lived!!!!

Aunt Roey said...

Cheryle & Mike--Yes, Braden has an issue (thankfully a mild one)to face...and he has MAJOR positives !!! EX:his quick wit/twinkling eyes/inborn computer ability/"adult-in-a-kids body mentality"/sparkling smile/handsome "cloned" good looks of his Dad/sweet personality/can eat 3 hot dogs in one sitting/astute memory/fascination with anything mechanical/& much more than I can include here. You are dealing with the right professionals for his medical issue--& you are fostering all the others as great,caring,loving parents. I am in awe of you both!!! Love, Aunt Roey

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