Surgery consult, TherEx report, and Where we are Right Now

As many of you know, last year was a tough one for Elena. The knee pain issue was a huge one for her and our family. After seeing 4 different doctors (some several times), here is what I learned. Keep in mind, this information gathering took well over a year.

1. Elena had pretty bad knee pain. By "knee", I mean the area up/down/all encompassing her knee. Because of her high kneecaps (due to crouch gait--quads constantly pulling up on the patellas) sometimes it's hard for me to figure out if this is a muscle issue, connective tissue problem, or bone/alignment problem. My impression is the doctors didn't always know either.

We started with our main ortho, which assumed it was tendinitis. Elena got a new compression brace that was supposed to help retain her kneecap (a little; I don't think this really worked). It was hot to wear, but I think it alleviated pain mostly b/c it restricted her movement.

E complained of pain several times a week, ranging from pain level 2 to 7. I consider this extremely significant b/c I think she has a high threshold for pain, and decreased sensitivity due to her rhizotomy at age 4.

2. We finally figured out that her kneecaps were fractured. Same injury--most likely not from a fall, but from stress forces from crouch. Bones pulling apart, I imagine, is quite painful. I was angry an x-ray was not originally ordered (this was discovered during our third different ortho doctor visit). My impression is that this isn't terribly common, but it's not a huge surprise to doctors when this shows up on an x-ray. While it is upsetting...it's not worth fixing kneecaps unless you can help alleviate the cause of the fracture. Which means getting out of crouch.

3. NO DOCTORS AGREED. This was maddening. I am trying to make the best decision I can as a parent, but it's very stressful when you get conflicting recommendations from my best advisors.

So, here we are, nearly a year later. I have scheduled, then cancelled, two procedures for her. I finally got a consensus with the second ortho--which I initially felt good about his recommendation (tendon lengthening/knee capsule release) but I wanted to report why the other two procedures have been taken out for consideration.

Plan A: Do nothing. Ortho1 says E's knee pain "wasn't that bad" (I vehemently disagree). PT takes breaks to let E rest and try to minimize pain.

Plan B: Knee capsule release (cut to allow knee to fully straighten), tendon lengthening, possible hip flexor lengthening. Would be 6-8 weeks in full leg (not hip) casts. Ortho1 strongly discourages this idea.

Plan C: Ortho3 also discourages plan B. Recommends dual distal femoral osteotomies with patellar tendon shortening to bring down kneecaps. This plan involves much longer recovery (obviously). It is now springtime. PT introduces Therapy Exercise Program (TherEx), to work specific muscles to help postural strength. It's a lot of homework, but we do it. I am doubtful it will do more than keep the unsatisfactory status quo. E started seeing a massage therapist.

Plan D: Ortho1 changes mind and says yes something should be done to alleviate crouch. Recommends growth plate tethering in both legs (in essence, keeps the front of knees from growing while allowing the backs to grow--effectively "growing out of crouch". I worry about introducing a new bone deformity and look for someone to support this, as Ortho2 and Ortho3 do not).

It's been 2-3 months, and much to my surprise--Elena's crouch is lessening. I attribute this to the TherEx program, something I had close to zero confidence would do much of anything. Summer brings new challenges, more rest, more opportunities to stretch and move out of school. Elena's knee pain has lessened, her kneecaps are still high (I do not really expect this to change) but she is moving very well and hardly complains.

Last month we travel to Alfred I Dupont Nemours Children's Hospital, under a recommendation from our regular pediatrician (who doesn't know a lot about CP, but seems to know Elena better than her specialists). We see a developmental pediatrician and Ortho4. It's a lovely visit. Ortho4 disagrees with  Plans C and D. He agreed with Ortho2 who said that the distal osteotomies wouldn't help her crouch, and there is a significant danger she would end up less mobile than now. He said that he has done several tethering procedures, and in his experience with CP kids like Elena, after a year (or so) when the plates are removed, there is a net zero gain--growth and spasticity don't mix well, and the tethering basically kept the crouch the same instead of getting worse after it was all over. He supported Plan B, almost identically (I didn't tell him what the other doctors had recommended). He was confident this would lessen her crouch, but also said there was no rush. He does recommend doing procedures to achieve her ideal posture before puberty, if possible, to try to establish good posture before her weight distributes differently (I definitely support this). He says her hips seem fine, and as long as she is not letting pain get in the way of her doing things, waiting is fine. He says if she has to opt out of things she would like to do because of pain or endurance, that is when surgery should be strongly considered. He said osteotomies would probably be a better choice if needed as an adult. (I can stress enough how wonderful the docs were at Dupont; they always spoke to Elena, the patient, first; it's obvious they specialize in children, and it's refreshing and wonderful--our visit there was fantastic.)

So. It's now almost Fall, and Elena is in 5th grade. Currently she is not complaining of pain and she is moving better than a year ago (amazing!). We are still doing TherEx (but have slacked a little), she wears Dynasplints at night on both legs (still doesn't make it through the night, ~4 hours is average), and we've brought the stander home from school to use at home (we'll end up using it on average 5x/week, for about 30+ minutes at a time) at Elena's request. Extracurricular activities are PT, and hopefully one class (gymnastics, yoga, robotics, or art are all being considered). I'm going to start taken weekly pictures/walking vids to see if I see her posture/gait significantly declines. If so, we'll look at doing something before middle school.

This has been a stressful, rough ride for the past year. I was freaked out I'd miss a window to help her. The biggest lessons I've learned are 1) take a deep breath, and try to be patient; 2) give your physical therapist TIME and opportunity; 3) information is power, even though experts may not agree; 4) slow down and try to enjoy the moment. Easy to reflect on that after a long time...hopefully I'll remember this next time!