Wednesday, July 6, 2011

Serial casting success: This time, the miracle stayed

So, as with many things about raising a kid with special needs, the serial casting turned out to be far less of an ordeal than I thought it was going to be. OK, getting Max to a hospital clinic once a week for four weeks wasn't exactly fun, but that was the worst of it. Max actually liked having the casts on and protested every time one had to come off. We removed each one ourselves the night before the next was due to go on. They were pretty easy to unravel.

The casts did not hamper Max's style in any way—just the opposite. First, they gave him good balance (much better than that in-turning right foot) so he could get around pretty quickly with them on. Ride a bike, even. Second, I could write "Max eats spaghetti sauce" on them with a purple Sharpie. I think that gave him an air of mystery. I'm Agent Purple Spaghetti Max. I like my spaghetti sauce stirred, not shaken.

The night we took off the last cast, while we were on vacation, Sabrina decided she was going to do the job.

Let me tell you, if I ever need critical care, I think I might turn to Sabrina. For all of her teasing and taunting of Max (and she is a master of it), she couldn't have been more gentle and loving when she unraveled the strips of material. And she didn't even bill him.

The next day, we headed to the hospital to have a night brace made. Max is going to wear one for the indefinite future, as he sleeps. We're also going to have to be more diligent about putting the foot braces (aka DAFOs) on him on weekends. He wears them during weekdays but on Saturday and Sunday, we used to give him a break. Not anymore, now that the cerebral palsy did a number on his right foot. We have to do everything possible to make sure that foot stays straight. Max's walking is a miracle to me every single day. He gets around so well. It would be devastating to see a miracle regress.

The amazing physical therapist who did the casting. Max laughed when she said her name: Ellen.

Amazingly, Max even let them put him on his stomach as they made the cast. He hates being on his stomach. He cried the entire previous time he had to do that. It helped to have Happy Feet on the DVD player.

They wrap strips of material around this rod, then cut down it to create a two-part cast you strap together with Velcro. The finishing touch: wrapping it in purple material. Max was beside himself with glee.

He literally did a Happy Feet dance.

Here's the finished brace. If Ralph Lauren ever decided to shoot an ad for serial casts, I suspect it might look something like this.

The serial casting did the job: His right foot is straight and staying flat on the ground when he walks. I watched it carefully all last week before Max went to camp, scared that I'd see it getting crooked again, but so far, so good. Max would wear the night brace all day if he could. He doesn't like the day ones as much, particularly because they are not purple and have a sports motif that has no air of mystery whatsoever.

If Max goes through another growth spurt that again messes up the tendons in his foot, he'll have to go through serial casting again. If that doesn't work, tendon lengthening surgery might be necessary. The words alone make me wince.

A few steps forward. Hopefully no steps back.


  1. All that casting and bracing talk sounds oh so familiar. My son wears a clam-shell HKAFO. It sucks. He has to wear it 24/7, only off in the bath and the knee joint is suppose to be locked unless he's in his car seat, or the stroller.

    And familiar stuff about the walking too. It's truly a miracle my son is walking. I thank God daily for that one.

  2. So glad to hear about the success of the serial casting! We are lucky to be living at a time when our kids have the opportunities to get these kinds of treatments.

  3. Glad to hear it was successful. Any time you can buy putting off the surgery should be beneficial. New research indicates that the older the child is for the first surgery the better the long term results. Just posted research info on blog today.

  4. OMG that is wonderful news! I read about Max and many of your other readers' kiddos who struggle with these issues and sometime panic myself about my daughter's future when it comes to casting and surgery, so this is great news for my mental list of things things-I-am-going-to-worry-about-whether-or-not-I-should. We are so lucky to not have dealt with growth spurts and their havoc yet but since she is only almost three, apparently we aren't out of the woods! I am indeed also grateful for my daughter's walkiness, and glad I live in a city with a Shriners' hospital in case these things come to pass, but tendon surgery strikes fear in my heart. It is one of those things that PTs telling moms about even when there is no need for such intervention now seems cruel - though apparently I need to know. I am so glad to hear this success story - yet one more reason to love this blog and this online community. Thanks! Yay for Max! And way to go Sabrina! Don't you love seeing your children nurture each other? That is very, very much, a good thing.

  5. I love this post. We don't have experience with casting but my son (who has Ds) is profoundly far-sighted and has to wear glasses. For some insane reason - in hindsight anyway - it took me awhile to get on board with being diligent about making sure he wore the glasses. My tendency was to give him "breaks" too. Craziest thing? I am very near-sighted and wear contacts and STILL it didn't register that I was actually giving him a "break" from being able to see properly. Secretly I think that the glasses were tied too closely to his Ds in my mind and therefore I was really giving myself a break from his having to be different all the time.

  6. Great news!!!!! Is there any reason why, if he has another growth spurt, you can't do the serial casting again, at least until he stops growing? My son has club foot, and while most kids used to be treated with surgery, the new norm is to do serial casting. Even now some docs will do surgery at age 3 if there's a relapse, but many are postponing this to age 6 or later, with serial casting along the way. (For most kids the gene that causes the tendon/ligament shortening is no longer active by age 4 or 5 -- so different than Max's situation with CP)

    Lots of luck to purple spaghetti max as he enjoys his first big week at camp!!!!!

  7. steps back! It's so nice to see hard work paying off.

  8. That is wonderful news! Haley wore DAFO's most of her young life. I had to buy shoes two sizes to big to fit around them. It looked so weird to have such a tiny girl with huge feet, but they did help. That is awesome that he puts up with it so well.

  9. I think we should get Prada to design a DAFO. Some of those designs are just dorky.

    Meadow, you are so right about how lucky we are to have those treatments. The therapist was saying serial casting is only about 20 years old. The only other option used to be surgery...or nothing.

    Ginger: Honey, you can add this to your list but that list could get very long if you fill it with all the possibilities of what could happen. NOT every kid with CP has to have serial casting, or even braces.
    Oh, and yes, it did my heart major good to see Sabrina taking care of Max like that. A rare moment of sibling bonding.

    Jaida, my husband is more about giving him breaks because of the very reason you mention. I am going to write about that next week.

    Michelle, we can definitely do the casting again if another growth spurt messes with his foot again. I didn't know they did serial casting for club foot, too. How great!

    Haley's Mom: We use Hatchbacks for the DAFOS, they're not cheap but they really fit the brace well.

  10. First off major Congrats to Max on the serial casting working.

    Secondly, and this relates back to your blog posts a few weeks ago. Something great happen at the store the other day and I wanted to share.

    Without me realizing it Chris (my 5yr old daughter) was staring at a little girl about her age who was in a wheelchair. As the girl's mother started to say something no doubt about Chris' staring Chris leaned over to the little girl and said 'Your pink chair is so cool! Pink is my favoritest color. I got pink stipes in my hair!' Next thing I know Chris and this girl are talking away about their favorite colors (I think. Both girls have speach issues and I could hardly understand either of them) I thought the girl's mother and I both were going to cry for totally different reasons. Her because as she said 'Most people act as if she's not really there.' and me because Chris is usually so shy around other kids because of her speach that she hides and refuses to talk.

  11. I'm glad it's working out so well!

  12. So happy to hear that the casting went well. That is wonderful news. Max's cast looks like it was about 1/3 the size of the ones that Emily had! Don't you love how they can tailor these things to meet the needs of each kid? Amazing! Love the pics - Max is looking super cute with his hair cut. It makes him look so grown up. Love the pics of Sabrina taking off the cast. What a great sister!

  13. Thanks for the update. None of our many therapists or doctors had mentioned serial casting until I asked a few questions after reading your original post on casting. I'm so thankful that I follow your blog because I think it might end up being really beneficial for my son and it might not have ever been considered if I hadn't thought about it after reading here. He will have Botox followed by casting next month.

  14. It's so nice to see our kids after their teasing and taunting to each other.If anyone of them not in good
    condition,they are always their to take care each other.


Thanks for sharing!

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