Monday, May 9, 2011

Cerebral palsy is a sneaky demon

Sometimes, I forget all about the cerebral palsy. It's not hard to, because Max is such a happy, healthy kid. Sometimes, it blindsides me, as it has recently—and shatters my calm about being mom to a kid with disabilities.

It started a couple of months ago, when I asked one of Max's speech therapists why he has so much trouble saying "hard" consonants, b's and p's and k's and d's. She explained how a lot of it has to do with breathing control, and how in turn that has to do with trunk control and weak core strength.

I was more aware of these issues when they prevented Max from crawling and walking, but once he was on his feet and getting around, it was no longer up there on my list of worries, replaced by other priority worries. Now it was back to haunt him, and me. I organized a conference call with his physical therapist (at school), occupational therapists (the one at school and the one he sees privately twice a week) and speech therapist (at school). Over the years, I've found that calls like these are the fastest, best way to come up with ideas.

I learned some new stuff during the call—for instance, Max's physical therapist had him doing sit-ups. She recommended I do them with him at home. So I've been sitting on his feet while he's lying on the floor and gently pulling him up by his arms. To motivate him, I do sit-ups, too, which cracks him up. I am not sure belly laughs are helpful for his core control, but at least they entertain him.

Max's PT reminded me that Max has been doing yoga at school, and sent home some positions to try.

The poses are easy enough, like the snake.

I don't think either of us will be doing this one anytime soon although if I had to take bets, my money is on Max.

So, I knew we had to focus more on core strength. Then a couple of weeks ago, the physical therapist told me that Max's right foot is tight. It's one of the reasons his new braces aren't fitting him so well, she thought. I hadn't noticed that but when he came home I looked and, sure enough, his right foot was turning in. Uh-oh. And...sigh. He still manages to walk OK, though he limps ever so slightly, with his foot slightly arched.

When I stretch his right foot, as we're supposed to do, it feels really stiff and impossible to flex. It is the cerebral palsy, and my child is caught in its grips.

"Does it hurt?" I've asked Max. "Noooo," he says, shaking his head, and it brings me some peace to know that he's not in any pain, and that he is able to tell me so.

We took him to the physiatrist last week. Turns out that Max's recent growth spurt has affected the muscles of his right foot (it's his more challenged side, since the bilateral stroke he had was worse on the left side of his brain). Because he suddenly shot up, the tendons couldn't keep pace. They were already on the tight side, but now they are even more so (spasticity, they call it). So Max will get a series of casts for three weeks, one a week. Each will subsequently stretch his foot a bit more, to relax the muscles and set them straight. Sadly, the casts do not come in purple (I asked, of course).

Meanwhile, tomorrow Max is getting Botox in his right hand, to help loosen it up. We're also trying Botox in his jaw to see if it helps the drool ease up. I still have no set plans to open that Mommy and Me Botox Clinic that could earn us a fortune.

This sucks. Just. Plain. Sucks. I always knew that during adolescence, with its hormones gone wild, Max would be at renewed risk for seizures. I never thought that at age 8, the cerebral palsy would flare up.

Of course Max will still be able to walk, no matter what. It's not going away. But the walking has been a hard-won victory, years of toil (Max) and tears (mine), and the prospect of regression is unnerving.

Tonight I am angry, so angry, at the cerebral palsy.


  1. I have an urge to tell you what I tell parents and my student teachers - CP is not a progressive disease, it is not a disease at all, with proper intervention there is no expectation of (or excuse for) regression. Things change, interventions change with them, but things don't go back.

  2. I'm looking for (inside my head) some comforting words, too. Like K said, his CP (brain) is not getting worse but parts of it are not growing with his body. Somehow, I don't find comfort in the explanation of CP and I is his body that is changing and the therapists know the ways to maintain, prevent worsening and promote good growth with exercise and braces. Oh, and the docs have their medicines like botox. CP causes a 'high-maintenance body'.

    Sending soothing thoughts if not words that really help.


  3. I've come to discover that with CP, it's always something. After 12 years I just expect that something new will crop up just when you think you've covered every possible body process.

    Hang in there. After a while you'll learn to just roll with it.

    We've been through casting twice. It makes such a difference. Hang on to that.

    I'm here to help if you need need it!

  4. Ahhhh. . . it's a sneaky devil, isn't it? Charlie's teacher was mentioning his weak trunk the other day and I wanted to laugh because we have come SO FAR in that area.

    It's tough and the tough rears it's head when we least expect it.

    Max will be good. You will be good. This is a pothole, not a road block.

  5. Ellen,
    Once again, this post somehow had a therapeutic effect on me. I can't give you any words of comfort, though I know that's not really what you're looking for. All I can really say is that it's okay. There are days when I too get angry at my CP. I'm sure there are days like that for Max too. What I do know though, is that everything you do and are doing will help to make the angry days a not as strong as the great days for you and Max. I've had pretty every procedure or aid that you just described throughout my years, so let me know if I can be of any help!

    And in my opinion, find a orthotist who will do a purple cast for Max! ;-) Purple was always my color of choice for casting as well!

  6. You know what is almost as cool as a purple cast? Being allowed to color your white cast all over with purple paint and markers! I wish I had solutions for everything else. Positive thoughts and prayers headed your way.

  7. It IS a sneaky demon, and I hate it too. Just last Thursday there was talk of Botox and serial casting at PT, even though Sarah Kate is doing better now than she ever has before. But...her little body is 8, as well, and they just keep growing and stretching parts that aren't elastic enough to stretch. The PT has said to me on multiple occasions, "She needs to be small like you, not tall like her daddy.". We both know that's unlikely, based on her current physique.

    So we continue to fight the demon...

  8. On the casts... Jonah had bilateral club foot, and they used plaster casts. The last cast had to stay on for 3 weeks, and they put a layer of fiberglass over it -- and that comes in GREAT colors!!!! See if they'll do that for you.

    If not, have at it with a purple sharpie :-) Or big purple sweat socks.

    The etiology is different, but club foot is caused by shortened ligaments and tendons, and the casts do wonders!


  9. While I don't have experience with CP, my son also has issues when he has growth spurts. I think we all get caught in our routines, different as they are from most people's, but we forget that our kids can be less able to adapt, whether it's physically, socially, whatever. So we reevaluate, which you're doing. You're mobilizing what you have and making it work for you.

    I wish you strength and perseverance,and that you can use your anger at CP to push through and above the same way you did when he was born and everyone was telling you, "He can't" and "he won't."

    Assuming these casts are regular casts, may I suggest a purple Sharpie for everyone to sign with?

  10. Hugs! I hate CP too most days. On the up side, I have heard wonderful things about the casting. We are also fighting growth spurt and the havoc that causes on Emma's body. Right now, her hips are askew, so we cannot weight bear for walking for a bit. I worry about the backwards slide too. Even though, it is not necessarily regression, I get what you mean--that horrible feeling. It's like you climbed this big ole mountain for years and and just as you think you're at the top, there's a bit of a slip. While we always get back up again, it is a reality check for sure.

    I think after the casting Max will be good as new. Thank goodness you guys are on top of things and caught it early.

  11. Our 4-y.o. daughter Lucy has CP, and finished serial casting (both legs at once, a new cast every week for seven weeks) a couple of months ago. I was really worried about getting her through it, but she was a total trooper, and it made such a huge difference in her mobility afterward. It was like night and day. Our kids can be tougher than we know. It was totally worth it, and I am hoping you and Max will have a similar experience.

    For Lucy, they actually had purple casts, so you might want to push a little harder for that, since it sounds like it will help your guy be more excited about the whole process. The color made a big difference for our girl, I think.

  12. I'd like to offer some encouragement, but I hate to say that growth and the stresses put on joints and muscles and nerves by abnormal tone and movement don't do our kids with CP any favors. No, CP is not a progressive disease, but as a therapist and a parent, I have often seen kids regress when they hit that adolescent growth spurt.

    My oldest "kids" are now 30 and they have had increasing problems as they have gotten older. And the medical community seems largely oblivious to the problems of adults with's very difficult, at least in our area, to find doctors who are any help.

  13. I had stretch casting a few times and it was very helpful. And no, the tightness really does not cause any discomfort until much later in life. Max isn't feeling a thing. Just keep at it with the therapy and the stretching. You may want to try some natural supplements as well. Magnesium can help with releasing some of the muscle tightness. CP is non-progressive - you just have to stay on top of keeping things in line. That's what can get tiring - you have to keep at it all the time.
    The most important thing is that Max is a happy boy! Keep it up!!

  14. It seems like with special needs kids, there's always some obstacle to overcome. It gets frustrating, but as you know you have a breakthrough on something else and all of that frustration goes away. Many prayers!

  15. Oh that's rough for Max and for you. Sorry you're dealing with this. Keep going brilliant woman. Xxxx

  16. Hi,

    I am a fairly new reader to your wonderful blog about max and you and I have to say it is brilliant. But this being new means I dont know awful lot about the treatments or aids Max has beyond whats in your last few posts, so the advice I give you, you may already know and use so for that I apologise. Im from the UK and work as a one to one for an 11 year old boy called Sammy who has left hemiplegia due to a stroke at premature birth amongst other special needs. He experinces similar effects that you decribe for max and firstly I want to say you should find a lot of success from the casting. But secondly I wondered if you have considered dynamic lycra orthosis for Max's hand and leg motor movements? Sammy wears a lycra arm splint and it has dramatically changed the way he hold his arm, the use of his hand and the strength/tone of his muscles. He has gone from ignoring hos arm completely holding his hand in a tight fist to use both hands for everyday tasks in just under a year. This is a link to the UK site but hopefully the information at least may be useful to you.
    I hope you feel better soon, they are many bumps along the CP journey some that take longer to iron out than others. Hang in there It'll all be worth it.
    Kerri x
    If you want to talk anymore about DLO im on twitter @kerriannmorgan x

  17. My son is nearly 9 now and we've gone through many challenges along the way, most of them completely unanticipated! But I can gladly say that the CP is less of a demon than it used to be, and in fact I've embraced it with a full heart because it's part of who my son is. My boy will likely always use a wheelchair, but we've found intensive physical therapy to be a godsend, both in terms of managing the spasticity that comes with the growth spurts and maximizing and even building on his function. Botox never worked for us (probably because they didn't offer that mother-son special!), but I hope it offers some relief to you. Wishing you the best!

  18. I know the feeling, Henry doesn't have CP, but his body has many of the same demons. Have you ever looked into TheraSuit? We just did it with Henry and it made an enormous difference. Contractures in his elbow went from 165 to 175 and 178 in 3 weeks from stretching and strengthening. He made significant gains in every area, going from 1s to 3s in the assessments, I wish I'd heard of it sooner for H. Henry also has difficulty speaking beacuse he doesn't have the breath support, but this improved too. I have no affiliation whatsoever with TheraSuit just think it is amazing and it was designed for kids that have CP. I have videos of H doing it, it's actually really fun, hard work, but fun.

  19. This was oddly therapeutic for me to read too as you wrote exactly what I have been thinking in recent weeks. We worked like crazy to get our son to grow and now that he has he is experiencing increased tightness. Aargh! We're also dealing with bony torsion which I must say "was not in the brochure." From the comments you received it sounds like casting may work great. Please update us as to how it works out for Max. Also, I think I'll borrow your conference call idea. Thanks for openly sharing your struggles, many of us relate completely.

  20. Thanks, all, for the kindness and support.

    Yep, I know CP is not progressive, and that it is a condition, not a disease. But it is the root of Max's issues. It can progressively cause more and more issues. And for that reason, it is a DEMON. Barbara, "high-maintenance body" is it, exactly.

    It is heartening to hear several of you have had success with casting.

    Curiouser, I think the "dynamic orthotics" you speak of may be the same thing as the Therasuit Lauri mentions. We had one of those for Max when he was young, and it did a good job. It is worth bringing up again with his therapists, that's for sure. Right now, I am focused on dealing with his right foot. And the Botox today.

    We need to go with the non-purple-cast-making orthotist for now, for speed's sake, but I do have several purple Sharpies in hand, and will put them to good use!

    Julie T: Borrow away, please! And "not in the brochure" made me smile. I think I will have to borrow that phrase, in return.

  21. I hear you and I think we all go through periods like this -- of being mad at the condition our child has and the unpredictability and recurring things that pop up.

    Children here have had really good results with Botox and casting. Let us know how it goes. Hugs xo

  22. We practice a form of therapy called Advanced Biomechanical Therapy that had been awesome for my daughter. There is a lot of information about it under Leonid Blyum and Advanced Biomechanical Therapy on Facebook. My daughter now is able to move the right side of her body and it seems to help stave off some of the contractures during growth spurts. I really appreciate your articulating some of the moments we go through with our children.

  23. You AMAZE me! I just read about you on and am inspired by all that you do as a mom. My hats off to you! God would only bless a truly strong woman with a huge heart to take on your roll. You are doing a great job--keep doing what you're doing! You are an inspiration!

  24. All I can say is that I am angry too. Sometimes it doesn't seem fair to think you have cleared a hurdle and have to come back to it, kind of like having to go twice around the track. (Can you tell I hate running?)

  25. A company called BOSTON BRACE makes those orthoses that "Curiouser" is talking about. You can get them prescribed/fitted:

  26. I'm sorry it feels like such a battle right now. I hope the casts help and the high-maintenance body begins to feel a little more low-maintenance. You are really doing right by your boy. And I'm liking the Mommy & Me Botox clinic. Lemme know when there's a Groupon.

  27. I want in on the Mommy and Me botox...and I had an angry day just last week. They suck. I'm sorry you're having one too.

  28. Good luck today! I think we may have had something similar to a dynamic orthosis when Henry was younger, too, a neoprene vest, that did help. I like the website that Curiouser sent and am sending an email to our therapists. TheraSuit is different and something one typically does in therapy. I hope that doing it will help prevent the tightness Henry gets from compensating for his low tone,We had great luck with serial casting for Henry's club feet. Hope everything goes well, you are on to something about the Mommy and Me botox:)

  29. First and foremost you already know more about the disease than most, so I am not going to say anything like "this too shall pass" or "he will be fine". I know how much I HATE those phrases. It seems to be the fall back when no one knows what to say. I understand how you feel when you let your guard down, let life go on as normal and don't let the disease take control. It is hard when you are reminded and you have to go through the process of coping all over again! It is almost as if you let the reassurances lulling you back into a reality that isn't true, almost a denial.

    I have learned to face the demons head on, with all the fierceness and love I can muster. I just recently went through round 3 of testing for Lily - everything is fine. But I almost got blind sided again with the reminder of the progression of her condition. I know you will find all the answers you need for Max - we special powers moms don't go down easy!

  30. Must be something about the weather... this primal scream feeling..... we are thinking about you guys!

  31. Good luck to Max and you, Ellen. I've been following your blog for a while now, without even knowing why, but this post just... struck a chord with me. My brother got this botox-and-cast treatment last year for his club foot... and it left him unable to walk at all for months. After an odyssey from doctor to doctor, my mother finally got the explanation that the full effect of the botox kicked in just when the cast came off. It's getting better now, finally, though he still can't walk for long distances because one of his legs is a lot shorter (it always was a little shorter, but his last growth spurt made that so much worse). It hurts to think that the lively boy playing football in the backyard is now stuck in a wheelchair... heck, just last summer we were still dancing at a festival... and now...
    Oh well. Fingers crossed for you, stuff like that seems to be pretty rare (since all the doctors were completely puzzled by it.)

  32. I spend so much time living life fully and plowing full steam ahead, that an event like yours causes a sharp intake of breath, not to mention.. punch to the gut.

    I get it. Keep the course, as you are doing, get/ teach your child the tools he needs and you will all move forward..

    Deep breath!

  33. I've had this problem here with Smiley and I'm so glad I did not know that growth spurts can lead to worse contractures because I would have been in despair :( But I am working with the therapists and if I have to get her on another intensive programme to get back the abilities she has lost then that is what I will do xx

  34. Yea, I needed this post. The CP Demon forced us today to schedule our daughter for lengthening surgery in just 3 weeks. It sucks.

  35. Ack. Mo, I was reading about lengthening surgery last night. I'm sorry... BUT, I hope it helps.

    Felicia, thx for finding that link.

    Hi, Marjorie! Miss you. hug.

  36. Hi there,
    My name is Nisha and I'm 20-year-old from South Africa who has CP and in the interest of being helpful I would like to ask that you NEVER LOWER YOUR EXPECTATION for Max.

  37. I was intrigued by Nisha's comment and found her blog The Adventures of Me. This is a remarkable young woman. She is committed to changing the world and has set a goal to raise $6500 for The Water Project and to build a well in a community that lacks clean water. I want to urge everyone to get behind her project. Read her blog and you will be blessed and inspired by her generous spirit!

  38. I know, Galen, I just went to Nisha's site. She is an inspiration! She also has a really good video up that explains cerebral palsy.

    And Nisha: I promise.

  39. Growth spurts thry are a pain for all kids growing out of clothes and over peers but for kids with CP they are a PAIN!

  40. I hate being deaf somedays too.


Thanks for sharing!

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