Saturday, October 13, 2012

The Post I Didn't Want to Write

This has been a pretty emotional week for me, and to be quite honest I'm not sure where to start.

There are three main parts to this:  school, E's visit to her orthopaedic surgeon, and her last PT appointment.

Regarding the first point (school), Elena has a fabulous team of people--educators, therapists, aides, and fellow students.  We have a few goals for her this year, but they were more or less informal and I had a great start with her team in the beginning of the school year.  The goals (aside from her IEP) were:  1) E will keep up with the class (under her own power), 2) she will carry her own lunchbox, 3) she will navigate steps at the school herself with good speed and 4) she will maintain focus to stay with her classmates (she is very distractible in hallways and tends to lag behind).  Then my husband was on an extended work trip for three weeks, and everything else disappeared off the radar.   When I reconnected with the team, I got some surprising news.

I had heard previously that E was always late, which I assumed was b/c of her losing focus in the hallways between classes.  Actually--that wasn't the problem at all.  Elena was always late--WITHIN the classroom.  She's last to the table, last to circle time, last to get up from the floor...and not only last, but actually very late.  At home she gets around without issue--but she's not hard pressed for time, unless it's in the morning for the bus, and that's not a huge problem.  I was floored. I figured the biggest obstacle was distance (for example, to the music cottage outside the main school)--and I was very wrong.  I'm hoping this is a focus issue, something related to her not wanting to stop a given activity to make it prompty to the next INSTEAD of a giant gross motor issue in the classroom.  I guess I hope that, anyway.  I was pretty disappointed that we had another/different/additional problem to deal with on top of her obvious disability.

Then we met with E's doctor, a yearly scheduled visit that often gets pushed back.  Honestly, this doc doesn't do all that much for us; we frequently get the "keep doing what you are doing" one-liner, and I have to press for more feedback, which I do.  During his examination of E's legs, he mumbled "that's interesting" and didn't continue.  I asked him to elaborate.  He said it was "shocking that Elena had so much spasticity below the knee, considering she had a rhizotomy".  I didn't know how to process this--what was he talking about?  And then I mentioned something about how SDR gave her the power to differentiate her right and left legs.  I can't remember the details--the conversation stopped (we were at the end of our appointment anyway), and I knew I was defensive but curious and the visit was over--it's sort of a blur.

A few days later at our usual PT appointment, Theresa asked about our doctor visit and I relayed what the doc said.  She immediately agreed.  WHAT?  What did that even mean?  And then Theresa said something that resonated--that patients who have had SDR typically do not deal with so much tone in their lower extremities post-surgery.  E is on her toes--A LOT.  The impulse is strong.  She can put her feet down when standing, on command, and stay there--so the problem is NOT length.  It's spasticity.

The whole reason we had SDR in the first place.

I felt like someone dropped an anvil on me.

The reality is...we don't have any other options.  This weight is so heavy.

I've tried to bounce back--honestly, we are NOT where we were pre-op.  This is a fact.  I've been thinking about this a lot, since I was asked to do a guest post of "where are you now" post-SDR, and up until last week, I was all sunshine and rainbows about it--and now I am disillusioned.  Pre-op, Elena's legs, when straight, were like steel--I felt like I was literally going to break her legs when trying to put her in her braces.  If she tried to move one leg in space (sitting, hands-free, or sometimes with her walker) both feet would move.  She fell "like a tree" all the time.  She could not side-step or back-step, etc. etc.  Post-SDR, the biggest difference I have always noted was that she can differentiate (and bend) her right and left legs--making walking, dressing, stairs, and protective responses much much more feasible.  I guess I didn't realize that most patients do those things with their feet flat--with a better foundation for balance.  It's easy to put her feet in her braces, but with them on and in her shoes, she's still on her toes.

This "up-on-her-toes" phenomenon didn't just happen.  It's been as long as I can remember, really, even post-op.  She's better at putting her feet down, but it HAS to be a conscious action.  I guess most other patients don't have to do that.  Theresa said that she's seen E's biggest gains after her lengthening procedures.  I figured that was because of the combined forces of SDR and the lengthenings, but now I'm not so sure.

I am quite upset because her spasticity is still a problem--and it isn't getting better.  I don't actually know if it is getting worse, but simply having such tone can cause all sorts of issues as she grows, and aside from stretching and therapies I have no other options (save maybe phenol block?, of which I am not keen).  I'm upset b/c I didn't think I had to continue to deal with this.  I guess we have been all along, but now that I am conscious of it, I find it very troubling.

I do think that she can have better command of her body (feet down, better recruitment) once she learns how to move "from the center" (think dancing or yoga)--but that is such a mature concept, it will be many years before she can understand this.  It's my job to try to keep her strong, stretched, and preserve her joints until she gets there--and if spasticity is bad, I don't know if I can do it.

Like I said...this weight is heavy.  I feel like Sisyphus.

8 comments:

Just the Tip said...

We always assumed Peyton's lower leg issues/tippy toe was from her CP. Her legs were very stiff and she was ALWAYS on her tippy toes..but after her cord was released they both greatly improved, almost immediately. Has she had a lumbar MRI just to be sure nothing else is going on that could be causing the lower limb issues besides her CP?

Hugs..

Anonymous said...

After reading this I sent you a long email with suggestions that might help you with Elena's spasticity since I wasn't sure if everything I had to say would fit here.

Margot

Anonymous said...

AMY: I AM SURE E IS DOING THE VERY BEST THAT SHE CAN.. I TOO HAVE CP AND WHEN I WAS E'S AGE I WAS ALSO BEHIND IN GETING FROM POINT A TO POINT B.. SHE IS BRIGHT AND SMART AND I AM SURE SHE WILL DO WELL..

AS FOR KEEPING HER HEELS DOWN.. I HAVE THE SAME PROBLEM I TOO CAN STAND WITH FEET FLAT BUT WHEN WALKING I TEND TO BE ON MY TOES AND I HAVE TO THINK ABOUT EVERYTHING BEFORE I DO IT..

NO MATTER HOE HARD WE TRY I THINK SPACITY ALWAYS MANAGES TO KICK US IN THE BUTT!

MELISSA

Tami and Bobby Sisemore Family said...

I am not sure where you are located but have you thought of seeing a Neurologist at a Spasticity Clinic? I am told they have them. We travel to see our dr. and in Lafayette LA they are in process of getting a Spasticity clinic going. My son is very severe and non verbal , can't sit or roll yet. I keep thinking if we can deal with the spasticity maybe he can have a bit more function.

Josephine Andersen said...

I hate those times when you think everything's going great and then you get slammed with something like that. That's kind of how I've felt since we found out Avery probably has some rotational scoliosis. Sucks. Have you looked into the alcohol block with ethyl instead of phenol? I know you said you weren't a fan of phenol, but ethyl works differently. That's what Avery had when she had her SPML done in August 2011, and we're still almost completely clonus-free. This link talks a bit about the difference between phenol and ethyl, although you probably already know, being all science-y and stuff ;)

may said...

Is E still doing horse riding? I find it great for body awareness but thats because if I want to get my horse doing x dressage move I HAVE to get my weight in the right spot

At least you as a parent you understand the move from trunk stuff(mine don't)

Anonymous said...

One more thing, Elena might be taking a long time to get from point A to point B because the kids in her class all get up and move to another part of the classroom very fast(7 year olds have a thing for speed) and she doesn't want to get run over and fall so she waits until there is a clear path? Just a thought.

Margot

Lee said...

Hey, I just stumbled on to your blog. Thanks so much for sharing E's and your story.I'm so sorry to read of the new issue's E is having with spasticity in spite of the SDR. I can so relate to your heartache and frustation with this. I;m mom to a daughter,with spastic quad cp, and her spasticity was always an issue. Unlike E though, my Danielle was severely neurologically impaired, non verbal and would never walk. We did the Balcofen pump surgery at age 12, and had 5 good years where it really made a difference. I inquired about SDR once with her MD at the movement clinic, he informed me that the nerve roots they clip with SDR can grow back. I hope this isn't the case with E.
If you ever want to communicate with other families please check out Cerebral Palsy Family Network. We have many families experiencing the same frustrations. Hopefully they can share their experience and advise. I'll be hoping and praying you find the answers you seek.