Growth

Well, still trying to catch up with life, here. Between school, therapy, Daisy scouts, traveling, soccer, ballet, friends--oh, and the work/home/life juggle, I've barely had any time or energy to update.

E is growing. Currently, she six years old (closing in on seven), about 35 pounds and 41(?) inches tall with her shoes on (she's a 5th percentile girl). She'd graduating to a new pair of Kiddiegaits (coming soon) and she's ecstatic about her new shoes--they're extra lightweight, and are black with pink accents. This is a big change, as she's had the exact same model for three years. She's happy about having new choices.

She's also graduating to a new pair of crutches. These are Easy Walks--she'll get the same model, only one size up.

I don't have to tell some of you that spasticity and growth spurts don't mix.

I dug out her knee immobilizers (from 2 years ago)--she wasn't excited, but tolerates them (a little)


But you know what? I feel like this hasn't been that bad. Elena is very mobile, and has a pretty good attitude most of the time when it comes to stretching or trying something new. We still struggle with the same old stuff--standing tall, putting her heels down, trying not to crouch--but in all honesty--for all the changes going on (physical as well as social and academic), things are going very well. I can say this was not the case in previous years. Either we're doing a good job of keeping on top of things, and/or SDR (?)/lengthening procedures (?) have really made all the difference when it comes to growth and spasticity.

Here's E at PT last week--great walking outside! Stopping is still a huge issue, but with any luck, we'll get there!

A little anxious...Surgery is THURSDAY

Elena is having a tendon lengthening procedure in three days.

We knew this was coming-- I guess with kids with SDCP, it's more of a "when" than an "if" type of situation. I understand parents' and therapists' opinions about not wanting invasive procedures done...but I feel incredibly strong that her quality of movement cannot be addressed with different types of "stretching" therapy.

SDR was a great choice for us. I still feel that way--E's spasticity has decreased tremendously. That has been a life-changer. But living with spasticity like she did for the first four years of her life made its mark--her calf muscles/achilles tendon are short, and her hamstrings as well. She has femoral and tibial inversion (CONFIRM THIS IS THE RIGHT NAME), where her bones have twisted--it's not bad enough to warrant a surgery for this right away (hopefully ever), but more proper weight-bearing will only help her structure--and should be done before age 9. She also has almost a "rocker foot", where the bones in the arch of her feet have broken down due to improper weight bearing (on the midfoot, as opposed to the heel), and this will eventually cause pain.

Elena will have percutaneous lengthening of the hamstrings (both sides, more on the right) and standard lengthening of the calf (exact location HERE) consisting of approx. 2 cm incision on each leg. She'll be casted below the knee ("walking" casts) for three weeks.

My expectations are that Elena will be able to stand up tall (after regaining her strength), hopefully with her weight evenly distributed on her feet (as opposed to her toes) and have a better foundation for balance.

We have several Feldenkrais sessions booked, to ease E into a new movement pattern during and after casting; we'll also continue her "normal" schedule as best we can (school, PT, scouts, Jimmy Time--unfortunately hippotherapy and yoga classes end this month) with a lot of holiday activity in the mix. An added PT session/week (CME) will hopefully happen early 2011.

Botox

Botox is a DEFINITION HERE. It has been used clinically for the treatment of spastic cerebral palsy for X years, although it has never been FDA approved for this purpose. There are dangers (see attached note from doctor). At the time of Elena’s first injections, I knew passively about the dangers related to Botox injections but I did not seriously consider them as a threat. She was given her first shots in the calf and soleus of each leg at X years of age. I have heard from older patients that the shot is very painful—the needle gauge is large, and the actual Botox preparation stings, in addition to the liquid displacement within the muscle (the pain we all feel with shots). Overall the process is quick, and she was not sedated. After her nap on the same day, for the first time in her life, her naked feet were flat on the ground. It was like a miracle! I knew it wouldn’t last, but having Botox treatment I believe greatly facilitates the use of AFOs, and allows the tendons and ligaments to grow more properly to avoid (or postpone) orthopaedic intervention. I would highly recommend it. The shots ARE EXPENSIVE. In general, at the time of this posting, it costs about $1000.00 per vial (her first injection was one vial, split between four muscles). Medicaid covered what my insurance did not.
She got her second round of injections 6 months after. Normal duration of Botox spastic muscle relief is around 3-6 months. elena was injected in the same muscles as before. Again, it lasted around 6 months, but her needs had changed—with increased weight-bearing, her right knee constantly “caved in” (due to the pulling action of her right adductor muscles) and she had a very hard time standing up straight (over-strong hamstrings). Her third round of injections was the first time they targeted multiple muscle groups—the adductors (inner thighs), hamstrings (back of the upper legs), calf, and soleus. She was sedated for these shots, as she had become bigger, stronger, and more vocal by this time. The Botox effect wasn’t as extreme this time around, as we still have to wrestle with flexing her right foot—don’t get me wrong, it is MUCH easier than before her injections. I can tell, though, that Botox treatment won’t be a viable option for us much longer. I imagine that within a 2-year period, there won’t be much benefit with further shots.
One observation that is worth noting: just b/c Elena had an easier time moving did not mean her balance improved. I guess being less “tight” gives her the opportunity to find a different way to balance her body, but any progress in the balance department is extremely slow. Botox has definitely given her the flexibility to work on protective responses, such as hands-in-front to catch herself when she falls, or bending her legs when she falls.