Thursday, August 27, 2009

Surgery? Toe Walking Continues.....

MJ has been walking on the tips of toes since he was almost 3 years old. We had been in physical therapy when he was 3 but it got expensive and it wasn't doing too much. His new pediatrician said wait and do nothing, then just do surgery when they are about 6 or 7. That seemed odd that there could be no preventatives, so we went to see an Orthopedic Specialist when he was 5.

This doctor recommended putting him in casts for the summer. He bent his feet in 90 degree angles then casted them to stretch them out.

Did this work? No, it maybe kept his tendons from getting any shorter, but it did not make any difference to the way he walked. He was right back up on his toes soon afterward if not almost immediately.

So, we've kind of been back and forth about his whole toe walking thing. Why torment a kid all his life with "PUT YOUR FEET DOWN!"? I got tired of it, and it made MJ have ill feelings toward many of our friends and family.

I asked doctors and specialists every chance I got and no one gave me a real need to take action. I figured maybe some day he would learn to walk down, or if he didn't then oh well, it was his own weird thing. I had seen a lot of other kids with autism do the same thing. He was my kid and I loved him.

Recently a little girl in our neighborhood, 5 years old, was going to have surgery. When I asked her parents what for I was surprised that it was because of toe walking. I had never really noticed this little girl, but her parents said she had been walking on her toes for so long that they wanted to take action.

They took her up to the childrens specialty hospital here and saw an Orthopedic Specialist (well, I believe it was one of their nurse practitioners) that told her if she didn't do surgery on her daughter that she would have back problems and other drastic problems as she got older. Now I have always wondered this possibility, but no doctor has ever confirmed these worries. They told me they were going to do this heel chord surgery where she would have her tendons cut then be casted for 4 weeks, then get them off. It was supposed to fix the problem.

Well, I still think, yeah, what's going to change such an awful habit? So what if you get your heel chords cut, what's going to stop the kid if he's always done it? But anyway, I was interested, and so we made an appointment to go see these specialists at the childrens hospital to see what they thought.

First things first, no one has really believed me on the intensity of MJ's toe walking. Whenever I have asked doctors to look, MJ is aware and he forces himself down on his feet to defeat the whole purpose. I sit there and look like some crazy parent who is trying to make up things wrong with my kid.

Well, this time I was lucky I guess and they actually saw his real toe walking patterns and they examined him and offered surgery right off. I'm not going to throw my kid into any surgery, so I asked many many questions.

They told me there wasn't really any problems with a kid who toe walks, that it's not going to cause them joint or bone issues or hurt their back, etc. (Now how come they told the opposite to the other girl's parents?) And interestingly enough, they said a kid with Asperger's will probably NEVER outgrow toe walking because an Aspie kid just doesn't really care. While other kids will be teased and pointed at, they will learn to walk down because of peer pressure. An Aspie kid is usually oblivious to the teasing, or just doesn't care enough to make the change.

They said MJ wasn't so bad, but they could do the surgery or not. This really wasn't too helpful. I wanted someone to tell me "this needs to be done" or "no, don't do it" and this surgeon was telling me neither. She sat there and sad it wasn't urgent and so we could think about it for years to come, but she saw the need enough that she could do it if we wanted to. SO weird! Isn't that why I go to these specialists so they can help me know what to do? How am I supposed to make that kind of a decision? I was concerned with doing surgery, but then at the same time concerned what would happen not doing it. The doctor said he wouldn't have any problems with toe walking but as his heel chords become tighter it may "hinder" him as he gets older and not allow him to put his feet down at all. Hmmm.....??? She said if he needs to be down playing sports, etc, that he may have problems.

Now, of course MJ hates all sports, but he does love to dance. He takes ballet and tap. The whole reason he takes tap is so I could get him to put those heels down! I haven't seen a big issue with him not being able to put his feet down when he dances, but there are a lot of times when he probably does look a little more awkward while dancing because of it. I want him to be able to dance if he wants, but is this whole toe walking thing going to mess that up?

I waited, and told the doctor I would think about it and she pretty much gave me the impression of whatever it didn't matter either way to her. I decided to go home and see what happened with the neighbor girl. Doesn't that sound bad? Like she's the guinea pig or something? I didn't mean that badly, just we thought we could see her experience.

Well, the little girl did surgery just fine and had 2 pretty pink casts on for a month. They were walking casts so they didn't slow her down any. We waited for the time to take them off. The week after she got them off we saw her at church and she was walking very oddly. One foot was twisted sideways and dragging while the other one pointed up in a strange way. I felt kind of bad for her and realized I didn't think about asking the doctor about what happens after surgery and recovery time.

I watched her for the next couple of weeks and she was getting better but still a little awkward. True, she wasn't walking on her toes anymore, but could she even get up on her toes? I asked her mom this later wanting to know if she could get up if she wanted to. I was concerned because it would be great to have MJ walk flat, but at the same time, if ballet is important to him, he needs to be able to get up on his toes too.

The mom told me she had tried to show her how she could get up on her toes but that she was clinging to the counter and bending her knees out to do it. Hmmm. This didn't sound good.

I'm sure this was all good for the little girl, and actually now 2 months later I see her walking great, but I worry about the whole after surgery thing. I guess the surgery cuts the tendon and so all muscles around it must be built up again and it will probably take a while before they are strong enough to support being on your toes. This is OK, but how do I schedule this in on a dancer?

We could do the surgery then hope he recovers and builds muscle during the summer in time for next fall's dance classes? Or do it in the middle of the year and throw him off? Or......

OK, you're thinking, this is dumb and it's just dance and your son is more important, but who's to say what will happen? I mean, what if he can never get back on his toes after surgery? He doesn't like any other extra curricular activities. He'll have his only thing taken away.

We decided we'll give it one more year. This year he has been waiting since he started ballet do try out for the fancy downtown city's Nutcracker. He will audition in a couple of weeks. Let him do that, have some fun if he makes it, then maybe this next summer we can do surgery. We'd rather not do any surgery, so we are implementing a plan of ankle stretching.

Every day we make him go for a walk around the neighborhood and he must have his heels down the whole way. At school we've told the teachers and principal to cue him when they see him up and to have him agree before walking laps that he must keep his feet down before walking.

We want to see if we can prevent surgery and not have to go through all these worries of when, how, what if???? Plus, poor MJ has enough issues as an Aspie let alone to be in 2 awkward casts for a while to add to it.

Of course we still love our son no matter what, and wonder what's to fix it in the end if he does do surgery. I'm not going to go on a path of doing surgery every 3 years like the doctor told me some kids do who have cerebral palsy or MS that shorten their tendons. Hmmmm.....we've got to break this habit. We hope we can. This year will be the test.


Geni said...

Thank you for this blog, it helped me consider the options for my toe walker! :)

Anonymous said...

I have a 8 year old son that has been toe walking since his first step. I didn't think it was a big issue I had toe walked until I was about 10, but lately I noticed that he has no balance when he puts his heels down flat. I freaked out and ran to a specialist. We are now doing physical therapy and it looks like surgery in the summer. Thank you for this blog it makes me feel that I am not the only one going through this.