Did you hear that sound? …on scoliosis

I really do have to stop tempting fate.

A few days ago, we did Botox. Even though I know that it isn’t a big deal, it stressed me out. Every time we do something new it stresses me out. But it went just fine, other than a lot of yelling and a bloody nose. And, being me, I said, I’ll look back on this, and it will seem like cake. Of course, that will be because we’ve move on to something scarier.

Welcome to something scarier.

It took exactly one day. That’s because we traveled from our town in South Dakota up to the Minneapolis area for Katie’s care. Because it’s a bit of a jaunt – anywhere from half a day to a whole day depending on how well she’s traveling – I stacked appointments and made a week of it. So, the day after the Botox shots, we met with our new orthopedic surgeon.

We’ve been talking with one ortho or another for about six years now. Katie has scoliosis, and we’ve been watching it, and wearing a TLSO. (BTW, when she had to be casted for a TLSO, she was two. When we received it, and the nurse roughly showed me how to strap her into it, it was the first time I really found myself saying, ‘I can’t do this!’ Do you hear me laughing at my own whiny self now? I am.) Every year, I have been looking at x-rays of Katie’s ever-increasing curve. And every year, I hear that we will eventually need to do something about this.

X-rays from previous years.
X-rays from previous years.

Something. That means something other than the brace, the therapy, the chiropractic, the hippotherapy, the craniosacral therapy, the hyperbaric therapy, the massage, the stretching that we have tried over the years. It means surgery. It means opening her up, and moving her spine back where it needs to be, and using a bunch of metal to make sure it stays there.

I have had years to get used to the idea that this is coming. But I’ve always managed to keep a spark of hope that we would avoid it. That she would stop growing before her curve got too big to manage. She’s only nine. She’s only four feet tall. As our nice new doctor said, ‘she hasn’t even hit her growth spurt yet’.

Last year, we talked with a different ortho, our local one. He isn’t a pediatric specialist, but he handles most of the peds cases in our area. He looked at Katie’s curve and said that we might want to consider doing something sooner than later, because he curve is smaller (T11-L4 ish) and sharper, and we may be able to get away with aggressively fusing just that length. But, he wanted to wait another year and see where we were at.

Last year.
Last year.

Where we’re at is here. An eighty degree curve. If you’re unfamiliar with this, I’ll tell you what an orthopedic surgeon/physiatrist that I work with told me: he would want to correct anything over sixty degrees, because after that it gets more complicated. After that, you start to risk encroaching on organs.

Well, okay. So, we’re sitting in our room and waiting to see our new doc, and the nurse comes in the does nurse stuff, and then she puts Katie’s new and improved x-rays up on the screen before she leaves.

This year.
This year.

I don’t need a doctor to tell me: this is not good.

So we meet the new doctor. He’s very nice. He has doctor ducklings following him: a resident and a student. We talk about Katie’s history and what’s been suggested and done to this date. He talks about misconceptions that many people have about the body jacket Katie has been wearing for years. (They don’t correct anything, and there is question as to whether they even slow the progression of scoliosis.) He tells me that he doesn’t usually suggest surgery the first time he meets a family, and that he doesn’t expect us to make a decision on the spot.

Me: Is there any advantage in waiting?

Doc: No. If anything, her curve will keep getting bigger. She is still pretty flexible right now. As she gets older, she is likely to get more and more locked into place. That will make the surgery more complicated.

Me: Would we need surgery if her curve stops progressing? (read: grabbing at straws)

Doc: (Gently) Well, if that were to happen, she could probably just be braced like she has been. But, there is NO WAY that will happen. (He didn’t shout, he just made it very, very clear.) This curve has momentum.

Me: What would the schedule look like for this?

Doc: The surgery would take about five or six hours. He would probably have another surgeon assist, and they could each start at one end, so it would take less time. She would need to be in the hospital for about a week. She would need follow up appointments at six weeks, four months and a year. She’d be out of school for three or four weeks. She couldn’t play contact sports for four months (not that she would).

I’m running low on questions. Oh, then there’s this one: So how many levels are you thinking we should do?

Doc: T2 to the pelvis.

I didn’t fall on the floor. But it was close.

…(find my composure. Use my mantra). Me: I had been told previously we might be able to get away with a smaller section. ?

Doc: Some docs try to do just the curving section. But what happens is that the stress of the curve is transferred to the neighboring sections, and after awhile, she would need a second, bigger surgery to fix that damage.

I know this is true. I read medical records and interpret people’s conditions for a living. I just don’t want to process that thought.

Me: I’ve heard about a selective dorsal rhizotomy. If she has to be opened like this, is it possible we could look at doing that at the same time, and she might gain some control over her legs?

Aside: the SDR is a surgery where a neurosurgeon uses an EMG to figure out which muscles are responding abnormally to nerve stimuli, and snips them. It is supposed to help the person have more and smoother control. I have a friend who had this done as a child, and feels it really improved her quality of life.

Doc: (Looks thoughtful. Ha! Nailed him with an unusual question! Score one for me.) Well, normally the rhizotomy is for people with more control to start with than Katie has. But, since she will be having surgery anyway, I don’t know. I can talk with a neurosurgeon here to see what they think of that idea. I’ll get back to you.

And then I’m out of questions. And my head is in a cloud – a dark one. I have spent years joking that I am keeping my head in the sand about scoliosis surgery – I prefer not to think about it, talk about, stress about it. I like to maintain some delusion that she will stop growing before this becomes critical.

Did you hear that sound? That was my head popping out of the sand.

Botox, Part II

So, yesterday Katie had her first Botox shots. We drove up to Minneapolis a day ahead of time. It’s about a four hour drive under normal circumstances, about seven or eight with my girl, because she needs more breaks/stretching/time to sit and eat lunch/etc.

The day went pretty well. She thoughtfully slept in, which is good, because she wasn’t going to get to have breakfast beforehand. We stayed at a very nice hotel, which gives a good discount to the patients at Gillette Children’s Hospital.

On the way out to the van, a man asked, “Going to Gillette?”. Yep.

“We’re here for that, too.” Cool. I love the comradery most of us parents seem to naturally fall into.

“We’re getting Botox today. First time.”

He smiled.
“That’s pretty easy.”

Then he held the door for us because, even though there is a ramp at the entrance, it’s about a four foot square of concrete which steps off in two directions, and the ramp shoots out parallel to the building. So, it doesn’t leave a lot of room to hold the door, keep your feet, and pull a chair through.

(Note to self; look up a good link for ramp guidelines.)

We made it through a small stretch of city to the hospital. Siri is my copilot – I used to get very stressed about finding my way in the urban jungle. Why is it that children’s hospitals are always downtown? Anyway, we got checked in, and signed the many forms, and got to our room.

Roughly seventeen people came through. The procedure was explained four times. We confirmed her name and birthday five times. Then the show was on. Because we were just doing Botox, the only medicine Katie got beforehand was nitrous oxide. Most people would find this no big deal, but honestly, I would rather she had just gotten a shot – having a mask held over her face was NOT FUN.

So, the Child Life specialist tried to distract and entertain her (that didn’t work). I tried to soothe her (that didn’t work). One nurse (?) held the mask over her face (with both hands, and a pretty impressive struggle, right up to the end of it all). Some random guy stood in the background and watched. Two nurses held her legs, and our doctor did the shots in her hamstrings. (That part went okay.)

And tada! We were done. An hour and a half, start to finish. Not too bad.

There weren’t any obvious side effects. The only thing that came up was Katie had a nosebleed that afternoon. I’m guessing it was from the battle over the face mask.

If we get good results (we should know in the next week or less), I think we’d be up for a second round. But next time, I’m going to insist that we skip the nitrous, and go for a light knockout.

Don’t sweat the small stuff

Okay. No food after midnight. Check. No milk after 2 am. No problem. No water for three hours prior to the procedure, and morning meds are okay, as long as there’s no more than an ounce of water with them.

Check and check. And to make life a little easier, Katie is actually sleeping in this morning (after being up at 2 am for no reason that I could find). So, overall, this is starting out smoothly.

So why am I stressed?

This is not a big deal. I know I’ll look back and say, ‘That was cake.’. Of course, when I do, it will most likely be because we have moved on to dealing with something harder.

When Katie was born, we didn’t know she would have a disability. But she did have some jaundice. She had to spend an extra day in the hospital under the lights, and then she was on something called a bili blanket – think ‘baby wrapped in cumbersome neon blankie’, and you’ll have a good visual.

At the time, I was really stressed out by that. It was hard to hold my baby. I was a new mom, trying to get the hang of breastfeeding, get the hang of not sleeping any more, heal, and on and on.

Yes, yes. The horror.

But at the time, it was horror for me. It was stressful. I wanted to get rid of the stupid apparatus and move on with our beautiful new life. I had no idea that our beautiful new life would include days, months, years of things that would make that blanket look like the briefest of afterthoughts.

So, this morning I’m taking Katie in for her first set of Botox shots. It’s stressful, because we’ve never done this before. I don’t really know what to expect. It’s a PROCEDURE. It involves drugs. It involves a toxin, for goodness sake.

I know that there will be a day very soon where I will ask myself, ‘Why was I stressed about that? That was cake!’.

But I also know that part of that realization will come when we face a bigger challenge. So, for now I will be happy to indulge myself by stressing over the little things.

Tough decisions

I just scheduled my daughter’s first set of botox injections.

This is a common treatment for spasticity, and it’s been around for years.

Still, it was a hard decision for me. We’ve been trying to keep her muscles under control with oral meds for years now. We had some success in the beginning (although she slept all the time), but for the last couple of years, we’ve just been kidding ourselves.

I can’t get her safely into a sling, because she hyperextends and there are arms and legs and head everywhere. It takes three hands to keep her from fish-flopping out, and another two to run the Hoyer – the only lift Medicaid will cover, at least in my state. So, I lift her. She’s fifty five pounds now, and four feet tall. And she isn’t helpful. And she’s STRONG.

So, I’ve been slowly realizing that we need to do something else. So, we tried a different med – it made her throw up. We are trying another one – her doctor just increased the dose, because it wasn’t doing anything.

The research I’ve done – and it’s by no means exhaustive – goes something like this: Prescription. Stronger Prescription. Botox. Baclofen pump. Dorsal Rhizotomy.

After dorsal rhizotomy, I had to stop reading for awhile.

Her physiatrist has suggested the next step might be a Baclofen pump. I’m leary, because the oral Baclofen has done very little for her. We may try it at some point, anyway.

There is a degree of guilt with every decision I make. Am I choosing this for her sake, or for mine? Is this to treat her, or to manage her?

I think the answer is a combination. Katie can’t tell me if she’s in pain, but it’s a pretty good guess that she is, at least some of the time. You can’t sit around with your muscles flexed all day long and not get sore. You can’t be thrusting out of your chair looking for the chance to stretch without it seriously getting to you.

On my part, I can’t keep lifting more and more, taller and taller (I’m 5’3”, and don’t have much vertical leverage on her at this point) without seriously hurting myself. Selfish? Yes. But hurting myself isn’t really my concern, it’s more like background noise.

The real concern, the real thrust behind that horrible phrase, “caregiver convenience” is Katie’s best interest.

What would happen to her if I couldn’t care for her anymore?

We have family that would help, but how would they do it? How long would it be before they were injured, too?

So, we need the mechanical advantage. We need to be able to get her into a lift comfortably and safely.

We’re talking with vendors about what kind of lift system might do the trick. So far, three children’s hospitals have given me the equivalent of a shoulder shrug. Shriner’s said there isn’t a solution for that, but if you come up with one, you’ll be rich. (As if I wasn’t already motivated!). Gillette Children’s said the solution is not in the lift, but in controlling her tone. That’s as good an answer as I’ve gotten so far.

So, we’re going to try Botox.

If that doesn’t help, we’ll try the next thing.

Treating spasticity

Spasticity

Well, actually, for Katie, it’s dystonia. My nine year old went from being like a wet noodle when she was a baby – wouldn’t hold her head up, needed to be propped in her baby seat, needed her head supported well past that newborn phase – to gradually getting stronger and stronger. That’s good, right?

Well, I am glad that she has strength. I wish she could use it, though. Katie really doesn’t have any middle ground for her muscles to work in – they’re either totally on or totally off. That is dystonia.

I will use the word spasticity interchangeably with dystonia here, even though they aren’t the same – spasticity usually doesn’t involve that wet noodle side of things, and people with spasticity often experience a reduction of range of motion, or contractures. But, since their doesn’t seem to be much difference in how the medical community treats these disorders, I’m going to lump them together, too. At least for the moment.

By the time Katie was two, I was having a hard time keeping her in her car seat (we hadn’t resorted to a wheelchair yet at that point). Her neurologist said that at some point we would probably need to medicate her for it. At that time, I thought, ‘ I think we’re there NOW’, but I didn’t speak up, and it was another two years before we actually started down that road.

We tried Baclofen, which had to be compounded (mixed into a liquid- only certain pharmacies do this). It didn’t seem to help. It did seem to upset her tummy.

Then we tried Clonazepam – okay, I might be forgetting another drug in there, but anyway, this is what we settled on. Katie was about five at the time.

The Clonazepam helped. But, it also made her sleepy. I didn’t care. She was so much happier, and I was having a much easier time taking care of her.

As time passed, the Clonazepam was less effective, so the dose was raised. It helped again, but made her more sleepy.

We have tinkered with her dose as well as adding other drugs off and on over the years, but have never come up with a good mix to help her have manageable tone and also be awake. Most recently, we tried Artane. Barf city – this made her very agitated, then it made her throw up. So, that’s on the NO list.

Right now we’re trying adding in Baclofen on top of her Clonazepam. The doctor has us taking this fairly slowly, since she was so sensitive to the last drug change. So far, I think it might make her a smidge more sleepy, but that’s about it.

I think the Baclofen trial is probably actually about easing us into the next potential step – a Baclofen pump. This is an implant that delivers a small dose of the drug right into the spinal canal, which is supposed to be a much smoother and more effective dose. I know some people who have had good results from this, but I don’t know if it would help us, since the drug hasn’t so far.

The other suggestion we’ve been given is Botox, and at this point, I think that is worth a try. We haven’t scheduled this yet, but we will probably be doing this over the summer.

What are your experiences with spasticity? Have you found anything that consistently helps improve muscle mobility and decrease pain without being knocked out or nauseous?

I’d love to hear your thoughts and experiences.

Stacy

Form follows function

Today, I cut the back out of my daughter’s winter coat.

Well, okay, to be fair, it’s her spare coat. She still has one that I haven’t mangled. I have to admit, I’m not very good at sewing. I have a mom and a MIL that are both famous for their work with fabric, but my skill falls more into the ‘rectangular curtains’ level. But hey, what I lack in talent I make up for with enthusiasm.

Besides, even if it’s a bit of a hash job, it will probably look better than the blanket cape she has been wearing. I can get a regular jacket on her but, like several others tasks, it’s getting to be more and more of a challenge. If I put her coat on before I put her in her chair, it’s not too bad. But this often isn’t practical. As Katie gets bigger and heavier, I find myself limiting the number of times I pick her up. Sometimes, I take the easy route, even if it isn’t the best. Thus, the blanket cape.

So, today I thought, ‘what’s the hardest thing about putting Katie’s coat on when she’s in her w/c? Answer: getting the fabric behind her. Then I thought, how can I modify the back to make this easier? Well, not having to get that fabric behind her would probably be good.

So I checked with my friend (the Internet), and sure enough, there are lots of designs out there for adaptive coats. I looked at a few different ideas, and settled on one that looked pretty easy. Plus, it matched the general style of my sacrificial coat. So, I cut a U shape out of the back, and turned the seam – I didn’t do a great job, but it’s passable.

coat back

Then I sewed the front seam closed (the zipper was sticking, anyway). So, the front is now solid, and the back is connected from the shoulders up. So, it should just slip over her head. Then I can slip her arms in, and tuck in the sides behind her. Okay, awesome!

I sewed the front of the jacket closed for stability, and because the zipper was shot anyway.
I sewed the front of the jacket closed for stability, and because the zipper was shot anyway.

Or… not. Did I mention my sewing skills are kind of iffy? I actually finished the sewing part uninterrupted (which is weird), so scurried off to check out how well this would work. Overall, the design isn’t bad, but it has one fatal flaw.

It won’t fit over her head.

Mom, my head doesn't fit through here!
Mom, my head doesn’t fit through here!

Okay, back to the drawing board. Or in my case, my friend the Internet.

 

Saying you shouldn't be unhappy because someone else has it worse is about as smart as saying you shouldn't be happy because someone else has it better.