Knee Braces and Wheelchairs: the CCS appointment, round 2

Starting your Spring break with a CCS clinic appointment isn't a great way to begin, and Queen Teen was not pleased. I had called CCS to ask about having her wheelchair adjusted because her knees are five inches past the seat. The facilitator said they had an opening at the next clinic and we should come. On Monday afternoon, the first day of vacation, we arrived at clinic, complete with hearing aids, knee brace, walker and wheelchair. Rick came too, ready to be my "bull-dog" if need be. I dreaded the appointment because I knew the doctor would push for the full leg to knee braces again, something we'd already decided against, and something I was tired of discussing.

The doctor watched her walk in and got that look on his face, the one that shouts disappointment and worry. Just once I'd like him to see HER and comment on her incredible strength and ability to walk at all, rather than focusing on the way her knees bend. I tried to feel patience by reminding myself that this doctor had driven three hours to see 20 kids in one day.

He examined her legs, twisting and turning them, and shook his head. Then he measured the hyper extended, backwards, bend of her left knee and shook his head even more. "Once it gets beyond 20 degrees she'll be in trouble."

I took a deep breath. "I know her knees are a problem, especially her left, and we are very concerned, believe me. But if we put full leg braces on a 14 year old girl who is already struggling with depression and poor self-image, it will crush her. I have to think about the whole child, not just her knees."

The doctor nodded. "It's a tough choice."

Rick explained how hard Queen Teen works. She remembers to do her exercises and feels proud of her ability to walk. Then he seconded how important it is to keep that spirit alive.

The doctor nodded some more.

Then the knee brace discussion began, but this time it felt like the doctor and therapists were listening to us, trying to come up with ideas to support Queen Teen's left knee without overwhelming her with braces. The bracing expert discussed the pros and cons of having the knee brace held up by an AFO. After several minutes of debate, I said, "Let's try it."

"I need to know you're going to do more than just try it, because it's a very expensive brace," the doctor said.

"We will do everything in our power to get her to wear it," I replied.

So the doctor agreed to order the brace. Queen Teen needs something to support that knee, and hopefully this knee brace will be tolerable; it feels like the right alternative to full, hip to toe, leg braces. We eventually won the war over the hearing aids, so perhaps we'll win the war of the knee brace too.

Queen Teen is getting a new wheelchair as well. Her current one is way too small and can't be adjusted anymore. She got to pick out the color (red) and seemed excited about getting a new chair.

One other bit of bad news though: I asked the doctor about Queen Teen's hands and how the fingers don't extend anymore. I wanted to know if therapy would help. He said no. She had hyper-extended her fingers and wrists as well and needed bracing to hold the fingers in the correct position.

Sigh... let's just do one bracing battle at a time.

The rest of Queen Teen's holiday was better, but still a bit boring. I'll write more about that next time.

Time to Do My Exercises

My daughter has accepted the challenge to save her knees and in her usual single-minded and optimistic way has begun exercising her legs on her own. She found the red elastic strap we used when she was strengthening her legs after her surgery and started working out. I went into her bedroom two weeks ago and found her on the floor with the strap wrapped around her leg. She was trying to pull it herself to create resistance, but instead she kept pulling herself off balance and falling over.

"What are you doing?" I asked.

"Getting strong," she replied as she adjusted the strap around her ankle.

"Can I help?"

"Yes." She unwrapped the strap and handed it up to me. "I have to make my knees stronger so I can walk better."

"Let's do it, then."

She grinned and lay on her tummy. I put her foot through the strap and held the back of her knee securely to keep it from flopping sideways. "Ready?"

"Ready," she said, then pulled her foot toward her while I held the other end of the strap, keeping it tense. She did twenty repetitions on each leg, then she sat on the edge of her bed and we did the same thing, only this time she lifted her foot upwards. I could feel her muscles and tendons working under my hands as she held her foot out, the tension creating a strain and forcing them to engage. She grinned.

This is why I can't just put braces on her legs. Yes, we may be taking a risk that no amount of exercise will improve things and her knees will deteriorate to the point where they won't be able to support her body weight. But this is obviously a risk my daughter is willing to take. I support her strength and determination. She isn't giving up, so why should I.

Every afternoon she finds the red strap and calls to me. "Time to do my exercises."

How do you know what choice to make?

My daughter's CCS (California Children's Services) bi-yearly review was a couple of weeks ago and since then I've been trying to figure out the best choice to make for my daughter, while at the same time realizing I don't have a clue what that choice should be.

At the clinic, the doctor who examined her looked at her knees, which bend the wrong way, and became alarmed. I tried to laugh it off. "Yeah, I know. I try not to look."

"I want you to look," he said without smiling. He then cautioned me that my daughter's knees are in bad shape and she should be wearing braces to support them. "If they continue to bow back, which they will as she gets heavier, she will reach the point where she won't be able to walk at all because they won't support her weight."

I said, "We took the braces off after her surgery because she was complaining of knee pain and the surgeon suggested giving her legs a chance to strengthen. Since we took the braces off, she hasn't complained of pain at all. If her knees are so bad, why isn't she in pain?"

"I don't know," he said. "But in time, she will be."

I looked around the room where seven people, therapists and consultants, sat listening. One of the physical therapists asked about just a knee brace, but the brace expert said that wouldn't help. She needs full, foot to hip, braces on both legs to support her knees. I looked at him, but he wouldn't make eye contact, and then I realized he was angry with me. He used to be friendly and has worked with my daughter since she was three. Now the frustration in his voice told me he thought I had made a bad decision removing the braces.

By the end of the meeting, the room was divided; physical therapists supporting my decision to not use braces right now, and the doctor and CCS staff urging me to consider braces again. The doctor said, "If you want to try therapy for a while, go ahead, but we need to talk about this again in six months." Great. We've got six months to save my daughter's knees.

This isn't the first time I've had to make a choice when the "experts" disagreed. Several years ago she was checked for sleep apnea, which she has. The sleep expert recommended we remove her tonsils to open up the air passage. The Eye, Ear and Nose specialist said her tonsils weren't the problem. Her neurologist agreed, saying it had more to do with her neurological issues. Then another neurologist said it WAS her tonsils. In the end, I decided not to put her through surgery when I wasn't sure it would help. The sleep expert angrily told me I was making a terrible mistake.

Last year, she had surgery on her feet because the bones in them had collapsed and she was walking on her novicular bone. She could hardly walk, even with her walker. One doctor was against the surgery because she might never regain muscle mass after sitting for so long because of her hypotonia. Another doctor thought if we didn't do anything at all, she wouldn't walk regardless. Her feet couldn't' support her weight. She was complaining of pain. That time I chose surgery, risking that she wouldn't recover fully because she was already losing mobility. The risk seemed worth it, and happily, she recovered very well. Except for her knees.

How do you know what choice to make? Who do you ask when the doctors disagree? How long is too long to "wait and see?" Am I hurting my daughter by not putting leg braces back on? Or will I hurt her more if I do? How do I tell my thirteen year old daughter who just recovered from surgery so she could walk, sorry, you're going to have to wear braces again?