Last week E had her second post-SDR follow up.
I have to say, I'm disappointed with the visit. Overall I feel like Elena is doing fantastically--Dr. Elias echoed that sentiment, but he really didn't examine her much. I thought he'd be pretty interested in her range of motion, how much lower her heels are, her ability to squat (some), or how much LESS tight her legs are--but maybe he got all the information he needed by watching her move a little. She walked across the room, independently, a couple paces at a time (nowhere near her best effort, as it was past lunchtime, and she was out of her shoe). She sat on a bench, and crossed one leg over the other (with her shoes on), each side. He asked if she was having any problems toileting, which she does not. He was very pleased.
He did say that I should expect her to improve a lot more. I had the impression that the majority of the changes come in the first 6 months after SDR; he said "double that" and then some. I'm pretty excited about that!
The PT there also examined her, and took a video of her walking. We waited a long time just for her to do that. I could have directed her to this blog--better videos, and we wouldn't have had to wait so long. Hmph.
Showing posts with label selective dorsal rhizotomy. Show all posts
Showing posts with label selective dorsal rhizotomy. Show all posts
Wednesday, July 15, 2009
Sunday, May 3, 2009
10 weeks post-op
Sorry for the lag between posts, Jason and I were on vacation (sans kids)!
No real big changes this week...everything seems to be very slow and gradual. I do notice Elena is better able to move her legs independently, and seems to have more control of her trunk while moving her legs. I see this as "her midsection and legs ceasing to move as one unit". For instance, Elena can now take off her shoes and braces (including all the velcro tabs) and socks off herself while sitting (and not falling over in the process). This is pretty new.
Overall, Elena's movements are more fluid, less jerky, and can be done while playing (movement does not take as much mental energy). There is still a long way to go, as her balance is still poor.
The big focus seems to continue to be getting Elena to move around without her knees caving in. At KCRC, Emily started off with E playing "Beanbag basketball", having her squat to pick up a bag, and trying to keep her knees apart.
This squat is actually better--when E reaches forward, she really gets the feeling of having her weight over her heels. Good stretching here...I have to believe this feels different for E, as she normally isn't in this position.
Emily said she "wasn't helping Elena all that much". But, if she were to let go while Elena was in a deep squat, I'm sure she'd fall.
I suggested an activity we'd been doing earlier this week--treasure hunting, where Elena squats down to different heights to pick up treasure. If she picks it up without falling, she keeps it. I had done this with coins, of varying heights--she DID pick all of them up, even the quarter on the floor--but it sure wasn't pretty (no pictures taken). Emily adapted this idea to a "scavenger hunt" where the objects were around the room, hidden under tissues.
Megan helping Elena read the scavenger list
Finding an item
The scavenger layout
Emily also tried to get Elena to do leg lifts independently on each leg. First she strapped ankle weights to each leg as usual, and told her which one to move. Like usual, Elena moved both legs at the same time. Then she took one weight off, and asked Elena to move the foot with (or without) the weight. She still moved both legs at the same time, but was aware they felt differently. Emily used a vibrator to stimulate one leg, while she asked Elena to move the other. It worked, a little. The awareness of moving her limbs/muscle groups independently is slowly coming.
Lastly, I had been inspired from my vacation massage to gently massage Elena's legs/feet after stretching every night. She seems to enjoy it, as long as it is gentle. Emily mentioned a technique called "ironing" (pic below). Starting on the upper leg, press gently on the leg and continue pressure as the hand moves down the leg toward the heel. It's sort of like petting, only a little firmer and in one direction. Emily said to do it before stretching (or before some activity, like therapy) and then again afterwards to see if it feels different or she reacts differently.
No real big changes this week...everything seems to be very slow and gradual. I do notice Elena is better able to move her legs independently, and seems to have more control of her trunk while moving her legs. I see this as "her midsection and legs ceasing to move as one unit". For instance, Elena can now take off her shoes and braces (including all the velcro tabs) and socks off herself while sitting (and not falling over in the process). This is pretty new.
Overall, Elena's movements are more fluid, less jerky, and can be done while playing (movement does not take as much mental energy). There is still a long way to go, as her balance is still poor.
The big focus seems to continue to be getting Elena to move around without her knees caving in. At KCRC, Emily started off with E playing "Beanbag basketball", having her squat to pick up a bag, and trying to keep her knees apart.
This squat is actually better--when E reaches forward, she really gets the feeling of having her weight over her heels. Good stretching here...I have to believe this feels different for E, as she normally isn't in this position.
Emily said she "wasn't helping Elena all that much". But, if she were to let go while Elena was in a deep squat, I'm sure she'd fall.
I suggested an activity we'd been doing earlier this week--treasure hunting, where Elena squats down to different heights to pick up treasure. If she picks it up without falling, she keeps it. I had done this with coins, of varying heights--she DID pick all of them up, even the quarter on the floor--but it sure wasn't pretty (no pictures taken). Emily adapted this idea to a "scavenger hunt" where the objects were around the room, hidden under tissues.
Megan helping Elena read the scavenger list
Finding an item
The scavenger layout
Emily also tried to get Elena to do leg lifts independently on each leg. First she strapped ankle weights to each leg as usual, and told her which one to move. Like usual, Elena moved both legs at the same time. Then she took one weight off, and asked Elena to move the foot with (or without) the weight. She still moved both legs at the same time, but was aware they felt differently. Emily used a vibrator to stimulate one leg, while she asked Elena to move the other. It worked, a little. The awareness of moving her limbs/muscle groups independently is slowly coming.
Lastly, I had been inspired from my vacation massage to gently massage Elena's legs/feet after stretching every night. She seems to enjoy it, as long as it is gentle. Emily mentioned a technique called "ironing" (pic below). Starting on the upper leg, press gently on the leg and continue pressure as the hand moves down the leg toward the heel. It's sort of like petting, only a little firmer and in one direction. Emily said to do it before stretching (or before some activity, like therapy) and then again afterwards to see if it feels different or she reacts differently.
Friday, February 27, 2009
Early Observations: Tone vs. Contracture
I meant to update this 2 days ago but I didn't have the time. We took Elena to her first post-SDR PT session at Kluge Children's Rehabilitation Center (KCRC). Overall the visit was good. Emily (PT) basically tried to move E to get an idea of her range.
There is no doubt her tone has improved (now has less tone than pre-SDR). Her left foot bends nicely at the ankle, and we have no problem getting her into her AFOs (we just started wearing them 2 days ago, but she still doesn't wear them all day). Her right foot has always been the problem. It's amazingly easier to put her in her AFO on that side, but after minutes of playing, I noticed her heel was "up" again (near the hinge). I was dissapointed b/c I didn't think that would happen. Well, not happen YET--I figured it would definitely happen (probably on both sides) as Elena grows (growth spurts typically are problematic for spastic diplegics, even post-SDR). Why wouldn't E's right heel stay down? Still too much spasticity post-SDR? Muscle memory (after all, E's been moving with her right heel up for YEARS)? Heel cord contracture (tendons too short)? Leg length discrepancy?
There was an initial disagreement between surgeons regarding which surgery to do first, the SDR or heel cord release--basically her heels are (were?) up b/c of spasticity (muscle tone) and tendon shortening (due to her calf muscles being in one default position too long, b/c she is always on her toes). It's hard to tell which issue is greater because they mask each other. Now that the tone has been lessened, it's possible we're seeing a contracture. We will most likely lengthen her tendons surgically at a later time.
Since she is young, I am hoping we can stretch her tendons over time to postpone surgery for a couple of years. I don't know if that is possible. We're going to stay as conservative as possible. Of course, if it's just muscle memory or lack of confidence that is preventing her from standing up straight with her heels down, that should be easier to remedy.
Emily testing range, right (left is fine, not shown):
Emily testing range in her AFOs (socks are always on, but we left them off for viewing/pictures), right. Note when light pressure is removed, her heel comes up. We need to have her AFOs fit more snugly to keep her ankle down as much as possible.
Standing in AFOs, left and right side pics:
Doesn't the right look better standing up?
Standing zoomout (note she is bent over at the waist). Her posture should improve with some stretching and boost in confidence (she is still not standing very often).
To passively stretch her legs, Emily gave us knee immobilizers--velcro straps with unbendable planks to keep her in standing. When (and if) her AFOs can be tweaked to keep her heels down, these immobilizers will help her legs to stay straight while keeping her knees from caving in (classic spastic diplegic stance). She tolerates them very well. Ideally she'll wear them for 30 minutes a day--today we did 6 minutes.
There is no doubt her tone has improved (now has less tone than pre-SDR). Her left foot bends nicely at the ankle, and we have no problem getting her into her AFOs (we just started wearing them 2 days ago, but she still doesn't wear them all day). Her right foot has always been the problem. It's amazingly easier to put her in her AFO on that side, but after minutes of playing, I noticed her heel was "up" again (near the hinge). I was dissapointed b/c I didn't think that would happen. Well, not happen YET--I figured it would definitely happen (probably on both sides) as Elena grows (growth spurts typically are problematic for spastic diplegics, even post-SDR). Why wouldn't E's right heel stay down? Still too much spasticity post-SDR? Muscle memory (after all, E's been moving with her right heel up for YEARS)? Heel cord contracture (tendons too short)? Leg length discrepancy?
There was an initial disagreement between surgeons regarding which surgery to do first, the SDR or heel cord release--basically her heels are (were?) up b/c of spasticity (muscle tone) and tendon shortening (due to her calf muscles being in one default position too long, b/c she is always on her toes). It's hard to tell which issue is greater because they mask each other. Now that the tone has been lessened, it's possible we're seeing a contracture. We will most likely lengthen her tendons surgically at a later time.
Since she is young, I am hoping we can stretch her tendons over time to postpone surgery for a couple of years. I don't know if that is possible. We're going to stay as conservative as possible. Of course, if it's just muscle memory or lack of confidence that is preventing her from standing up straight with her heels down, that should be easier to remedy.
Emily testing range, right (left is fine, not shown):
Emily testing range in her AFOs (socks are always on, but we left them off for viewing/pictures), right. Note when light pressure is removed, her heel comes up. We need to have her AFOs fit more snugly to keep her ankle down as much as possible.
Standing in AFOs, left and right side pics:
Doesn't the right look better standing up?
Standing zoomout (note she is bent over at the waist). Her posture should improve with some stretching and boost in confidence (she is still not standing very often).
To passively stretch her legs, Emily gave us knee immobilizers--velcro straps with unbendable planks to keep her in standing. When (and if) her AFOs can be tweaked to keep her heels down, these immobilizers will help her legs to stay straight while keeping her knees from caving in (classic spastic diplegic stance). She tolerates them very well. Ideally she'll wear them for 30 minutes a day--today we did 6 minutes.
Wednesday, February 25, 2009
Surprises at Home
Yesterday was Elena's first full day at home. She slept better last night than in the hospital, but she has separation anxiety from Jason, as he was on night duty at the hospital. I'm sure that will get better. It sure makes tired parents. Thank God we have Annette.
When I got home from work (early early shift--YUCK) I put Elena's AFOs on for the first time (with her shoes also). I'll post a pic later today. She didn't fight, squirm, or complain when I put them on. I do think wearing them gives her more confidence. I also think they feel rather heavy on her feet. I just had her wear them on our trip to the library, where she was in her stroller the whole time.
She wore them until we took them off after lunch, so maybe 2 hours. No complaints.
After E woke up from her nap, we did standing drills. She was less resistant to putting her heels down, and even helped stand up out of her chair, bearing weight on her hands and feet to do so. We did drills for 20 minutes while we played Littlest Pet Shop.
Before dinner, she threw a football all around the first floor and crawled to chase it. She didn't complain about her sitting (w-sit) or crawling, she was too busy laughing the whole time.
Later on that day, Elena wanted to do her treadmill. We put her shoes on again. While we were waiting, she stood up out of her chair, holding onto her dresser with one hand, and then started cruising along the dresser--for a few steps, then she looked at me like she was uncomfortable. I sat her down again after that for a few minutes. She took about 5 steps on the treadmill (with Jason holding most of her weight) and then said she was finished.
I certainly didn't expect her to stand up today or cruise at all on her own. YAY!
When I got home from work (early early shift--YUCK) I put Elena's AFOs on for the first time (with her shoes also). I'll post a pic later today. She didn't fight, squirm, or complain when I put them on. I do think wearing them gives her more confidence. I also think they feel rather heavy on her feet. I just had her wear them on our trip to the library, where she was in her stroller the whole time.
She wore them until we took them off after lunch, so maybe 2 hours. No complaints.
After E woke up from her nap, we did standing drills. She was less resistant to putting her heels down, and even helped stand up out of her chair, bearing weight on her hands and feet to do so. We did drills for 20 minutes while we played Littlest Pet Shop.
Before dinner, she threw a football all around the first floor and crawled to chase it. She didn't complain about her sitting (w-sit) or crawling, she was too busy laughing the whole time.
Later on that day, Elena wanted to do her treadmill. We put her shoes on again. While we were waiting, she stood up out of her chair, holding onto her dresser with one hand, and then started cruising along the dresser--for a few steps, then she looked at me like she was uncomfortable. I sat her down again after that for a few minutes. She took about 5 steps on the treadmill (with Jason holding most of her weight) and then said she was finished.
I certainly didn't expect her to stand up today or cruise at all on her own. YAY!
Monday, February 23, 2009
Day 5
Day 5 post-op--or should I say, DISCHARGE DAY!
Elena was in pretty good spirits today. The morning was spent calming her down between doctor visits, removal of IVs/tubes, filling out discharge information and getting Elena to eat. The hospital preschool teacher came by for a visit to ask if E wanted to go to school; she said yes. I sent her there with Grandma b/c I was expecting another doctor visit before discharge.
About 20 minutes later, my mom came in huffing and puffing asking me if it was alright for Elena to be moving around. I said, "clarify moving around".
"Oh, you know, crawling around, sitting up, reading books--is that okay?"
I bolted.
Sure enough--there she was, sitting up on the floor getting a book. She was a little shaky with balance, sort of like a newborn kitten moving around. She was having a great time in the preschool.
After school, we said good-bye to the nurses and strolled out. She was VERY happy to be going home!
Priorities were 1) BATH, 2) lunch, 3) NAP. But first she insisted on taking care of her baby sister, giving her a good rock before getting to business.
She also crawled a little--head up, tabletop, with reciprocal leg motion. Not a great pic, but here's what I have.
She can sit in a "w" sit but she really leans back. She also knows when she w-sits, we always ask her to "fix her feet", meaning try to taylor sit or side-sit. She always does it with her left foot (first), b/c that's the easiest leg to move around for her. It took her a while, she was almost studying herself as she moved, but she got to a side-sit with her left leg. I asked her if she wanted to fix her right foot and she tried and fell backwards (but laughed about it). She asked me to help her, so I tried, but she didn't seem comfortable, so I just let her play sitting however she wanted.
Later in the day, she sat on her "office" bench (bench without a back). She sat up and played with both hands. Sometimes she leaned so far back I thought she would fall, but she caught herself. We also played beans by her Bean Box. She sat in a chair with a back and arms; she normally leans over to play in the beans but I think this movement is painful. So I put a bunch of beans on the top of the box and that seemed to be good for now.
She did some standing drills, and we even "walked" on our treadmill before going to bed (we held her up, no shoes, and she lightly placed her toes on the platform and took maybe 5 steps before she said she was finished).
AMAZING. We are so thankful for everyone...our therapists, doctors, nurses, teachers, aides, friends, neighbors, and everyone just sending us good thoughts. Jason and I are dog tired. And NOW the hard part begins, right?
Elena was in pretty good spirits today. The morning was spent calming her down between doctor visits, removal of IVs/tubes, filling out discharge information and getting Elena to eat. The hospital preschool teacher came by for a visit to ask if E wanted to go to school; she said yes. I sent her there with Grandma b/c I was expecting another doctor visit before discharge.
About 20 minutes later, my mom came in huffing and puffing asking me if it was alright for Elena to be moving around. I said, "clarify moving around".
"Oh, you know, crawling around, sitting up, reading books--is that okay?"
I bolted.
Sure enough--there she was, sitting up on the floor getting a book. She was a little shaky with balance, sort of like a newborn kitten moving around. She was having a great time in the preschool.
After school, we said good-bye to the nurses and strolled out. She was VERY happy to be going home!
Priorities were 1) BATH, 2) lunch, 3) NAP. But first she insisted on taking care of her baby sister, giving her a good rock before getting to business.
She also crawled a little--head up, tabletop, with reciprocal leg motion. Not a great pic, but here's what I have.
She can sit in a "w" sit but she really leans back. She also knows when she w-sits, we always ask her to "fix her feet", meaning try to taylor sit or side-sit. She always does it with her left foot (first), b/c that's the easiest leg to move around for her. It took her a while, she was almost studying herself as she moved, but she got to a side-sit with her left leg. I asked her if she wanted to fix her right foot and she tried and fell backwards (but laughed about it). She asked me to help her, so I tried, but she didn't seem comfortable, so I just let her play sitting however she wanted.
Later in the day, she sat on her "office" bench (bench without a back). She sat up and played with both hands. Sometimes she leaned so far back I thought she would fall, but she caught herself. We also played beans by her Bean Box. She sat in a chair with a back and arms; she normally leans over to play in the beans but I think this movement is painful. So I put a bunch of beans on the top of the box and that seemed to be good for now.
She did some standing drills, and we even "walked" on our treadmill before going to bed (we held her up, no shoes, and she lightly placed her toes on the platform and took maybe 5 steps before she said she was finished).
AMAZING. We are so thankful for everyone...our therapists, doctors, nurses, teachers, aides, friends, neighbors, and everyone just sending us good thoughts. Jason and I are dog tired. And NOW the hard part begins, right?
Sunday, February 22, 2009
Day 4
Today was fantastic! First of all, Elena slept for the first night since her surgery. BIG DIFFERENCE. She also continued to eat relatively well, with no nausea issues. Overall her mood has been good.
The main goals today were to 1) get her to eat more, 2) do some PT (PROM, standing drills) and work on her confidence (having fun). She didn't really eat well until lunchtime, but that was alright. We did 2 major PT sessions, (a 2-person job). She did get her heels almost down at each session--the second session was later in the day, without a nap--and we did standing drills for over 10 minutes! The drill involved throwing a beanbag to a toss-across game, and when she threw the beanbag her feet barely moved off the floor (normally her spasticity kicks in when trying to move either her hands or feet). She still resists putting her feet on any surface, either due to pain, sensitivity in the feet, tiredness/poutyness, or confidence. When doing standing drills we hold her under her arms--today we did get her to bear some of that weight in her hands AND feet (holding on to a surface while partially standing).
We did PROM every 3 hours until mid-afternoon, after that I forgot until her bedtime. Her range looks great, and she is more relaxed and does not shy away from anything touching her feet. She also has excellent "potty awareness"--the nerves they cut are extremely close to those responsible for bowel/bladder function, but as of day 2 she has been informing us of her elimination needs.
Another goal is to sit her up 1-2 hours per day, either in a wheelchair or other chair, provided her joints are at appropriate angles. She can stay in a sitting position (involves trunk strength and balance) by supporting her weight on both sides, or holding on with only one hand. After enough time, she will fall to one side. When in her wheelchair for long times, she will list, but she can sit upright with voice cues. We prop up her arms for balance as well as fit (the wheelchair is a little wide for her).
She does ask to "put her shoes on" when wanting to do something out of her current range--she needed her AFOs and shoes in order to move well (balance foundation) prior to surgery. She thinks that by putting these on, she will be able to move like she used to. It will take her a while to realize that isn't the same now. I'm not sure when we'll be using her AFOs, but it isn't now.
For fun, we played hide-and-seek in the lobby under construction, played "school" with Grandma, and played with her toys given to her by visitor friends (as well as watching lots of Curious George). I'm seeing more and more of my girl E every day, only LESS TIGHT. Dr. Elias came by this morning at rounds and said she looked "perfect". WEEEEEE!
The main goals today were to 1) get her to eat more, 2) do some PT (PROM, standing drills) and work on her confidence (having fun). She didn't really eat well until lunchtime, but that was alright. We did 2 major PT sessions, (a 2-person job). She did get her heels almost down at each session--the second session was later in the day, without a nap--and we did standing drills for over 10 minutes! The drill involved throwing a beanbag to a toss-across game, and when she threw the beanbag her feet barely moved off the floor (normally her spasticity kicks in when trying to move either her hands or feet). She still resists putting her feet on any surface, either due to pain, sensitivity in the feet, tiredness/poutyness, or confidence. When doing standing drills we hold her under her arms--today we did get her to bear some of that weight in her hands AND feet (holding on to a surface while partially standing).
We did PROM every 3 hours until mid-afternoon, after that I forgot until her bedtime. Her range looks great, and she is more relaxed and does not shy away from anything touching her feet. She also has excellent "potty awareness"--the nerves they cut are extremely close to those responsible for bowel/bladder function, but as of day 2 she has been informing us of her elimination needs.
Another goal is to sit her up 1-2 hours per day, either in a wheelchair or other chair, provided her joints are at appropriate angles. She can stay in a sitting position (involves trunk strength and balance) by supporting her weight on both sides, or holding on with only one hand. After enough time, she will fall to one side. When in her wheelchair for long times, she will list, but she can sit upright with voice cues. We prop up her arms for balance as well as fit (the wheelchair is a little wide for her).
She does ask to "put her shoes on" when wanting to do something out of her current range--she needed her AFOs and shoes in order to move well (balance foundation) prior to surgery. She thinks that by putting these on, she will be able to move like she used to. It will take her a while to realize that isn't the same now. I'm not sure when we'll be using her AFOs, but it isn't now.
For fun, we played hide-and-seek in the lobby under construction, played "school" with Grandma, and played with her toys given to her by visitor friends (as well as watching lots of Curious George). I'm seeing more and more of my girl E every day, only LESS TIGHT. Dr. Elias came by this morning at rounds and said she looked "perfect". WEEEEEE!
Saturday, February 21, 2009
Day 3
In my mind, I figured Day Three would be our turnaround day. It was, in a way. We left the PICU late last night (Elena didn't need intensive care yesterday; the main pediatric ward was full). This morning, Elena had more of an appetite and was in much better spirits. She is able to sit up a little more, and can enjoy playing with both hands in a recline sitting position.
PT came in the late morning and stood E up again, this time with her feet on the floor. She stood up better today, willing to bear more weight on her feet than yesterday. The floor is also hard and cold, but she didn't seem to mind the different texture on her feet. She also complained of her feet being cold, and now wears socks willingly (before she didn't want anything touching her feet). We have a PROM regimen, supposed to be 5 times daily, and we can give slight pressure against resistance. INSERT PROM/MOVEMENT RULES (I had to give my copy to E as drawing paper today)
The rest of the day was not as great as the morning...the PICU is a place of quiet solitude compared to the main ward. Everything there is *loud*. E hasn't slept much since the procedure, and she didn't sleep at all today. We were supposed to do another standing drill, but E was very uncooperative so it was very short. After that we put her in her wheelchair (sitting regimen, supposed to do 1-2 hours per day) but she was very upset with it, and said she was nauseaous, so that was cut short today. Hopefully tonight she will rest well, and tomorrow she will eat well.
PT came in the late morning and stood E up again, this time with her feet on the floor. She stood up better today, willing to bear more weight on her feet than yesterday. The floor is also hard and cold, but she didn't seem to mind the different texture on her feet. She also complained of her feet being cold, and now wears socks willingly (before she didn't want anything touching her feet). We have a PROM regimen, supposed to be 5 times daily, and we can give slight pressure against resistance. INSERT PROM/MOVEMENT RULES (I had to give my copy to E as drawing paper today)
The rest of the day was not as great as the morning...the PICU is a place of quiet solitude compared to the main ward. Everything there is *loud*. E hasn't slept much since the procedure, and she didn't sleep at all today. We were supposed to do another standing drill, but E was very uncooperative so it was very short. After that we put her in her wheelchair (sitting regimen, supposed to do 1-2 hours per day) but she was very upset with it, and said she was nauseaous, so that was cut short today. Hopefully tonight she will rest well, and tomorrow she will eat well.
Friday, February 20, 2009
Day 2
Jason takes the night shift, the tough one. Elena had a rough time with nausea and lack of sleep. I came in this morning to Daddy having some holding time. Elena is much much calmer when she is being held.
There were a lot of changes today: Elena has her bed elevated (reclining), she is able to lie on one side of her body (torso and waist must be in-line). Jason noticed while she was sleeping that her ankles were bent, which was new.
She had her first real visit with the physical therapist today. Elena wanted to get off her back, as it was uncomfortable--so the therapist just stood her up. Literally. Partial weight-bearing, with the intention of putting her heels down a little. At first Elena resisted, cried, asked for me--but after she was up, she was quiet and seemed to realize things were not so bad. I was amazed that she could do this so soon. And her feet? Almost flat! With her legs pretty straight, too!
After that, they did Passive Range of Motion (PROM). The PTs moved her legs to the point of resistance OR to a certain angle, as not to put pressure on her back. Important to note this is *not stretching*. Her range was AMAZING. We could definitely not achieve these positions without serious resistance (especially her right leg, which is in the bottom pictures.
That was the extent of PT in the morning--a big change for Elena, and a glimpse of what her legs might be like months from now. PT returned later in the day to do more standing, and they asked Elena if she would walk to me (she didn't want to, but "asking" wasn't exactly what the PT meant)--and E DID!! She walked 3 steps (with assistance, of course) but that was MAJOR. Her reward was I got to hold her, but she didn't have to be flat. It was fantastic.
After that, Elena got to sit in a wheelchair. This is a big deal b/c she's in a position other than lying down, and you have to have trunk strength to sit up. We went on a stroll around the 7th floor, with our Dora balloon, and even downstairs to the main floor to see the Coffee Ladies. The idea of going on an "adventure" out of the PICU made E very happy.
Thursday, February 19, 2009
Day One
Elena is still in a considerable amount of pain, but she's much improved since yesterday. She can sleep for an hour at a time, but her startle response keeps her from resting well. For those who don't know, people with spastic CP "startle" like you or I do, when surprised, or scared, but it's much more intense of a muscle spasm--and for someone who just had back/nerve surgery, that spasm HURTS LIKE HELL. And Elena typically does it after 20-30 minutes of sleeping, so she doesn't rest well.
She was allowed to "move" this afternoon (lying on one side or the other) but the transition is very painful. I was also allowed to hold her, but it was difficult to move her with all her cords attached, and it's a 2+ person job b/c we have to keep her "flat" during the transfer. She rested well in my arms though, so I was thankful.
We are also having a problem with nausea...the pain meds keep her sort of comfortable, but she can't keep even small amounts of liquids taken by mouth b/c of them. She now has regular anti-nausea medication, but she has to take them 8 hours apart, which is a long time. She hasn't ingested anything since Tuesday night, but we're hoping tonight she can keep enough liquid down to justify trying solid food (cracker(s)). Once she's able to eat something, I think she'll start turning a corner. PT starts tomorrow (it was supposed to start today, but E was resting when the therapist stopped by).
Her feet also hurt. This is not surprising after cutting nerves--I guess it's a painful tingle, felt more in her right foot than the left (b/c more nerves were cut on that side). She does not like to be touched below the knee, especially on her feet, and says it hurts. But after some whining, she's relatively quiet. Lots of books, lots of videos. She's a very good patient.
Overall her status update is great. She is exactly where her doctors thought she would be. That's great, but as a parent, you wish your child wasn't hurting...
Wednesday, February 18, 2009
The PICU
About 4 hours later we got the call that Elena was in the PICU. We weren't sure what to expect...I figured it was probably between a hysterically crying, flailing kid and a totally serene sleeping beauty. Um, sort of.
Elena was hooked up to a ton of tubes and monitors. Horribly reminiscent of the NICU. Elena was awake, sort of--moaning, crying, in pain. Her eyes were puffy from edema--lying face down for 4 hours will do that--and her throat was swollen/scratchy from the trach tube, and she was groggy/disoriented/nauseous from the anesthesia. The next couple of hours were spent trying to figure out what she could tolerate safely for pain management.
I thought once they figured out what painkillers to give her, our PICU stay might be smooth sailing--but I was wrong. Apparently, even though resting is the best medicine for sickness/post-op, there "is no rest in the PICU". She has to be checked every hour, and really, her "sleeping" is for 20 minutes at a time at best. She holds her breath a lot and winces. She is supposed to be much improved after the next 24 hours, where we should be transferred out of the ICU and to the main pediatric ward.
Her first sentence, after having her sheets changed and being moved around:
"Mommy!" *whining* "THIS IS NOT VERY FUN."
The good news was we got the news from the neurosurgeon that the surgery went beautifully. After checking her nerves, he confirmed that her spasticity was located only to her legs below the knee. When he found a spastic nerve, it was "off the charts" in terms of a spastic signal--meaning, there were no nerves that were mildly spastic, which made the judgement of which nerves to cut much easier. He found (and cut) more on her right than her left (which makes sense, as her right leg is tighter) and he feels like she is a "textbook case" of a patient that can benefit from this procedure.
The incision is maybe a and inch and a half long--could be smaller, I didn't get a good look. After it heals I'm not sure I'll even notice it.
SDR-Day
This morning was just about perfect. Elena woke up just as we took her to the hospital for her procedure. She was friendly to the doctors and nurses, even though the time was getting late and she was hungry. She took her "pre"-sedative like a champ...but didn't fall asleep.
I carried her in to the operating room. She had been in places like this before, and she does NOT like the gas mask...but she got it anyway. I was escorted out.
Then, we waited.
Thursday, January 29, 2009
To SDR or not to SDR, that is the question
Parents of kids with spastic diplegia know that fighting to get into their shoes/AFOs is a daily struggle. This was ameliorated for a while with Botox injections. Botox allowed Elena to have her feet flat for the first time, which allowed her AFOs to form an arch in her feet (previously she pronated so badly she didn’t have one) as well as give her a better foundation for balance. We had three rounds of Botox in total. Her last one (July 2, 2008) hardly took effect, despite the fact that more muscle groups were targeted (hip flexors and adductors in addition to the usual calf and soleus). We still had to struggle to flex her feet to put them in her AFOs—it was only marginally easier post-injections, and only for a month or so. Her AFOs were on the verge of being to small, and they were “old and worn”, as far as Velcro fasteners and plastic molding goes, so it didn’t take long for Elena to be back on her toes after putting on her AFOs/shoes.
I knew SDR was an option for Elena, I have since our orthopaedist told us after Elena’s second botox injection. The question for me was when to do it; I didn’t know (at the time) when Botox would stop working, and I was pregnant with our second child. Our doctor said to consider SDR when Botox was “off the table”. That was August of 2008. He amended that to “when Botox was off the table and AFTER the new baby is born”.
What is SDR?
Selective Dorsal Rhizotomy, for those who don’t know, involves severing nerve “rootlets” from the spine responsible for overstimulation to the muscles in the legs. Effectively, it can “permanently” (this has been debated) reduce spasticity. It is not a cure for cerebral palsy, and it is not recommended for all people who have CP. Good candidates for this treatment have all or most of the following: relatively symmetrical spastic diplegia, muscularly strong (not to be confused with just being “spastically tight”), easily motivated for PT, and still be young (preferably between ages 4 and puberty), and have parents that are committed to an intense PT schedule post-op. Elena is/has all of these. St. Louis Children’s has a great site.
SDR is not performed at every hospital—the percentage of patients who get this surgery is quite small, so even if a surgeon is trained, they may not have lots of experience with this procedure. Since it involves a judgement call, experience is a plus. Since it is “permanent” (quotations b/c spasticity can return, but not as great, and it takes a long time), there is a real risk of trading strength for mobility—kids can have the range to move, but be left without enough nerves to stimulate the muscles to support the desired movement. The ideal is to have a normal range of motion with the strength to support it, and that is not always achievable.
Team Opinions
My first course of action was to poll everyone who had anything to do with Elena as to their opinion of her as an SDR candidate:
Orthopaedic (surgeon): Strongly Pro. (Of course! He cuts into people for a living!) He said she’s a great candidate, and it would reduce her need for future surgeries (not all).
Neurosurgeon 1: Pro. Probably strongly pro, but he’s not pushy. He thinks she can really benefit from the procedure, and it should alleviate the need for some (probably not all, but maybe) future surgeries.
Neurosurgeon 2: Pro. Probably strongly pro, but also not pushy. Said that he thought E would benefit tremendously, but reminded me—cutting nerves is a very painful procedure. Said that E was a natural with PT and her movement patterns were good, and he has never had a patient that wasn’t the same kid (psychologically) post-SDR as they were pre-. The longest it took a kid to mentally recover, in his practice, was 2 days.
Main PT: Cautiously Pro. She understood Elena was a good candidate, but she was concerned about interrupting her current progress (PT and school) and wondered how she would cope psychologically. Wanted her to be older/stronger.
Orthotist: Pro. He said future bracing can’t keep her in her shoes, and SDR would allow her to have a good support for balance, and would help keep her soles/feet in line, therefore preserving her knee and hip joints as well as possible.
Auxiliary PT1: Cautiously Pro. Had lots of experience with kids pre/post SDR. Strongly Pro if using the head surgeon from her former location.
Auxiliary PT2: Con. Worried about the permanency of the procedure. Elena was already so functional, why mess with what works (albeit, works not as well as those without CP). Didn’t think it was worth the risk.
Auxiliary PT3: Pro. Thought E was a great candidate and would benefit tremendously. Not worried about E’s psychological state, said she was one of the best prepared she’d worked with.
Auxiliary PT4: Con. Thought it was better to work with what we had then try to give Elena a new body to learn to move. Said there was never surgery without risk. Interestingly, he is also impaired (including legs) from a brain injury during adolescence.
Developmental Pediatrician: Pro. She’s distant/impartial, but seems to think it’s a good idea.
Regular Pediatrician: Pro. He thinks we’ve weighed all options and thinks SDR is the right call, given her tightness and strength and motivation.
Finding a good neurosurgeon
Before her last Botox shots (July 2008), I decided to go on a hunt for a neurosurgeon do perform SDR.
I checked here, at UVA first. Dr. Elias does SDR. He does about 3 a year. He is one of the top neurosurgeons in the country, but his specialty is epilepsy. I liked him, but wanted a second opinion—how was I supposed to figure out if he was the best person for the job?
The recommendation from one of Elena’s PTs was for Dr. Tae-Sung Park. She used to work with him, and he has seen every type of CP kid there is. He is located at the Children’s hospital in St. Louis. He has “pioneered” what is the modern-day SDR procedure (smaller incision site, etc) and hands-down has the most experience. This seemed just fine, except for the fact that I am absolutely scared to death of flying, and our-in town neuro (Elias) was taught by Park. I wondered about Dr. Park’s age and notoriety—he could retire, and Elena isn’t exactly a high-profile case. She’s not going to be some poster-child for impairment-to-normal-gait type of change, so I wasn’t sure if Dr. Park would actually be the one to operate. If not, well…maybe his team would be better than other surgeons, since it’s Park’s team. How was this different than Elias? Hmm. St. Louis also does NOT take my insurance. The procedure runs about $50,000. I didn’t want to make this about the money—we would find a way to pay if Park is the best person for the job. But I wasn’t sure if that was true.
Our orthopaedic surgeon didn’t seem to recommend Dr. Park. He said he had changed his criteria for selecting SDR candidates, and had become a little more lenient in his selection. Meaning, if you weren’t as strong or symmetrical or whatever, he’d still consider SDR even though other surgeons wouldn’t. This was a red flag for our ortho. He had a lot of confidence in Elias. I still wasn’t convinced that there wasn’t some bad blood or something between our ortho and Park, so I continued to look for information.
I made an appointment at Duke neurosurgery. I spoke to Dr. Fuchs, who does more SDR procedures/year than Dr. Elias does. He’s very easy to talk to and spent a lot of time with me. He echoed our orthopaedist’s concerns regarding Dr. Park. Not because he had any personal problem with the man, but because he considered Park to be more aggressive of a neurosurgeon than he used to be. For a child like mine, this was a big deal—Elena is highly functional, and I wanted a more conservative surgeon (that’s not to say that Park wouldn’t do an excellent job). Fuchs had knowledge of Elias, and had very good confidence in him and the UVA staff. He also mentioned the truth of having everything Elena needed in my home town, and the benefits of staying local. He also said the best way to find out about a surgeon for something like this isn’t to ask the surgeon or their staff—it’s to ask the patients. That’s slightly problematic, given doctor-patient confidentiality, but some centers will contact former patients to see if they would be willing to talk with me. So that was my next job.
Over the next few months, I had the opportunity to talk with 5 mothers of SDR patients. 3 of them had their procedure done by Dr. Park, and couldn’t be more happy with their experience. One child was 2 yrs old when she had SDR, and her legs were “scissored” all the time—she’s going to college this year, and was on the cheerleading squad in high school, and was skiing at the time I talked to her mother. She uses loftstrands for long distances, and that’s it. Another was a boy who had it when he was 6 or 7. Now he plays baseball—granted, he’s not the best on the team, but he’s ON THE TEAM. He’s had 2 heel cord lengthenings post-SDR. Another was a girl who had it done when she was 5 or so. She uses loftstrands now also, but can run and jump and all that. They all did warn me of the immediate aftermath of SDR, with their children slumped over in wheelchairs, drooling, due to weakness/change in balance. These candidates seemed more impaired than Elena, although the two older children could already walk before the procedure.
The other two had their surgeries with Elias. They did not experience any of this extreme “floppiness” post-SDR, although there is no way to determine if that is due to the child or the surgeon (or anesthesia). The first child was a boy, he was 3 at the time of the procedure, and he could not walk at all independently and was crouching very very badly which made using a walker very difficult. He was officially GMFCS 3. A year later, he is taking a few independent steps at a time (5-10) and no longer crouches. They have been doing PT (or some other athletic activity) 5x/week since the surgery. The second child, also a boy, had the procedure done when he was 5 and his feet turned so badly inward (pigeon-toed) he fell constantly and could not walk on any surface that wasn’t perfectly flat and was still in diapers. Now, even though his feet are still turned inward, his balance has improved amazingly and he can run up hills, curbs and run and jump and is now potty trained.
All the parents had intense praise for their respective surgeons.
Now What?
Here’s what I know: Elena is a good candidate. She’s great with PT. She’s had to get used to new legs twice already (post-botox) and did fantastically. She’s had three surgeries already (eyes), and isn’t nervous about doctors b/c we are honest with her when she asks questions about her operations. I was on bedrest for 2 months, and she saw in the hospital and understood why I was there, why I couldn’t move, and that I’m fine now. I know that if we do NOTHING, Elena will be alright (mentally). I also know that she absolutely will have future surgeries, to lengthen her tendons, or fuse her ankle bones, or fix a hip dislocation or something like that if we don’t do anything. She’ll probably need surgeries even if we do SDR; but SDR has the potential to alleviate the spasticity that would cause lots of future problems. I’m pretty sure that it’s not going to get easier for her to psychologically deal with the surgery or PT afterwards for many years—and then, it may be too late to avoid/lessen issues related to tendon length or joint stability. She is strong now, motivated now, young now, and her body (jointwise) is in great shape now.
Still...my girl Elena is a wonderful child. She’s happy, even though she knows she doesn’t move like the other kids. But she gets tighter all the time.
My anxieties revolve…
E's a great kid.
She moves pretty well for a kid with CP.
She's getting worse.
Repeat.
I have a chance to give her the best, most normally functional body she can have. If there is always a risk with surgery, I have a chance to reduce the number of surgeries=reduce the number of risks. Now is a good time.
I scheduled her surgery date for February 18th, 2009 with Dr. Elias. I picked him for several reasons: he was local, he was well recommended, he was conservative, he’d seen Elena several times before her procedure so he knew her functionality well, he was plugged into the PT/children’s hospital network here, UVA takes my insurance, and Elena’s friends and family and therapists are all close by.
I knew SDR was an option for Elena, I have since our orthopaedist told us after Elena’s second botox injection. The question for me was when to do it; I didn’t know (at the time) when Botox would stop working, and I was pregnant with our second child. Our doctor said to consider SDR when Botox was “off the table”. That was August of 2008. He amended that to “when Botox was off the table and AFTER the new baby is born”.
What is SDR?
Selective Dorsal Rhizotomy, for those who don’t know, involves severing nerve “rootlets” from the spine responsible for overstimulation to the muscles in the legs. Effectively, it can “permanently” (this has been debated) reduce spasticity. It is not a cure for cerebral palsy, and it is not recommended for all people who have CP. Good candidates for this treatment have all or most of the following: relatively symmetrical spastic diplegia, muscularly strong (not to be confused with just being “spastically tight”), easily motivated for PT, and still be young (preferably between ages 4 and puberty), and have parents that are committed to an intense PT schedule post-op. Elena is/has all of these. St. Louis Children’s has a great site.
SDR is not performed at every hospital—the percentage of patients who get this surgery is quite small, so even if a surgeon is trained, they may not have lots of experience with this procedure. Since it involves a judgement call, experience is a plus. Since it is “permanent” (quotations b/c spasticity can return, but not as great, and it takes a long time), there is a real risk of trading strength for mobility—kids can have the range to move, but be left without enough nerves to stimulate the muscles to support the desired movement. The ideal is to have a normal range of motion with the strength to support it, and that is not always achievable.
Team Opinions
My first course of action was to poll everyone who had anything to do with Elena as to their opinion of her as an SDR candidate:
Orthopaedic (surgeon): Strongly Pro. (Of course! He cuts into people for a living!) He said she’s a great candidate, and it would reduce her need for future surgeries (not all).
Neurosurgeon 1: Pro. Probably strongly pro, but he’s not pushy. He thinks she can really benefit from the procedure, and it should alleviate the need for some (probably not all, but maybe) future surgeries.
Neurosurgeon 2: Pro. Probably strongly pro, but also not pushy. Said that he thought E would benefit tremendously, but reminded me—cutting nerves is a very painful procedure. Said that E was a natural with PT and her movement patterns were good, and he has never had a patient that wasn’t the same kid (psychologically) post-SDR as they were pre-. The longest it took a kid to mentally recover, in his practice, was 2 days.
Main PT: Cautiously Pro. She understood Elena was a good candidate, but she was concerned about interrupting her current progress (PT and school) and wondered how she would cope psychologically. Wanted her to be older/stronger.
Orthotist: Pro. He said future bracing can’t keep her in her shoes, and SDR would allow her to have a good support for balance, and would help keep her soles/feet in line, therefore preserving her knee and hip joints as well as possible.
Auxiliary PT1: Cautiously Pro. Had lots of experience with kids pre/post SDR. Strongly Pro if using the head surgeon from her former location.
Auxiliary PT2: Con. Worried about the permanency of the procedure. Elena was already so functional, why mess with what works (albeit, works not as well as those without CP). Didn’t think it was worth the risk.
Auxiliary PT3: Pro. Thought E was a great candidate and would benefit tremendously. Not worried about E’s psychological state, said she was one of the best prepared she’d worked with.
Auxiliary PT4: Con. Thought it was better to work with what we had then try to give Elena a new body to learn to move. Said there was never surgery without risk. Interestingly, he is also impaired (including legs) from a brain injury during adolescence.
Developmental Pediatrician: Pro. She’s distant/impartial, but seems to think it’s a good idea.
Regular Pediatrician: Pro. He thinks we’ve weighed all options and thinks SDR is the right call, given her tightness and strength and motivation.
Finding a good neurosurgeon
Before her last Botox shots (July 2008), I decided to go on a hunt for a neurosurgeon do perform SDR.
I checked here, at UVA first. Dr. Elias does SDR. He does about 3 a year. He is one of the top neurosurgeons in the country, but his specialty is epilepsy. I liked him, but wanted a second opinion—how was I supposed to figure out if he was the best person for the job?
The recommendation from one of Elena’s PTs was for Dr. Tae-Sung Park. She used to work with him, and he has seen every type of CP kid there is. He is located at the Children’s hospital in St. Louis. He has “pioneered” what is the modern-day SDR procedure (smaller incision site, etc) and hands-down has the most experience. This seemed just fine, except for the fact that I am absolutely scared to death of flying, and our-in town neuro (Elias) was taught by Park. I wondered about Dr. Park’s age and notoriety—he could retire, and Elena isn’t exactly a high-profile case. She’s not going to be some poster-child for impairment-to-normal-gait type of change, so I wasn’t sure if Dr. Park would actually be the one to operate. If not, well…maybe his team would be better than other surgeons, since it’s Park’s team. How was this different than Elias? Hmm. St. Louis also does NOT take my insurance. The procedure runs about $50,000. I didn’t want to make this about the money—we would find a way to pay if Park is the best person for the job. But I wasn’t sure if that was true.
Our orthopaedic surgeon didn’t seem to recommend Dr. Park. He said he had changed his criteria for selecting SDR candidates, and had become a little more lenient in his selection. Meaning, if you weren’t as strong or symmetrical or whatever, he’d still consider SDR even though other surgeons wouldn’t. This was a red flag for our ortho. He had a lot of confidence in Elias. I still wasn’t convinced that there wasn’t some bad blood or something between our ortho and Park, so I continued to look for information.
I made an appointment at Duke neurosurgery. I spoke to Dr. Fuchs, who does more SDR procedures/year than Dr. Elias does. He’s very easy to talk to and spent a lot of time with me. He echoed our orthopaedist’s concerns regarding Dr. Park. Not because he had any personal problem with the man, but because he considered Park to be more aggressive of a neurosurgeon than he used to be. For a child like mine, this was a big deal—Elena is highly functional, and I wanted a more conservative surgeon (that’s not to say that Park wouldn’t do an excellent job). Fuchs had knowledge of Elias, and had very good confidence in him and the UVA staff. He also mentioned the truth of having everything Elena needed in my home town, and the benefits of staying local. He also said the best way to find out about a surgeon for something like this isn’t to ask the surgeon or their staff—it’s to ask the patients. That’s slightly problematic, given doctor-patient confidentiality, but some centers will contact former patients to see if they would be willing to talk with me. So that was my next job.
Over the next few months, I had the opportunity to talk with 5 mothers of SDR patients. 3 of them had their procedure done by Dr. Park, and couldn’t be more happy with their experience. One child was 2 yrs old when she had SDR, and her legs were “scissored” all the time—she’s going to college this year, and was on the cheerleading squad in high school, and was skiing at the time I talked to her mother. She uses loftstrands for long distances, and that’s it. Another was a boy who had it when he was 6 or 7. Now he plays baseball—granted, he’s not the best on the team, but he’s ON THE TEAM. He’s had 2 heel cord lengthenings post-SDR. Another was a girl who had it done when she was 5 or so. She uses loftstrands now also, but can run and jump and all that. They all did warn me of the immediate aftermath of SDR, with their children slumped over in wheelchairs, drooling, due to weakness/change in balance. These candidates seemed more impaired than Elena, although the two older children could already walk before the procedure.
The other two had their surgeries with Elias. They did not experience any of this extreme “floppiness” post-SDR, although there is no way to determine if that is due to the child or the surgeon (or anesthesia). The first child was a boy, he was 3 at the time of the procedure, and he could not walk at all independently and was crouching very very badly which made using a walker very difficult. He was officially GMFCS 3. A year later, he is taking a few independent steps at a time (5-10) and no longer crouches. They have been doing PT (or some other athletic activity) 5x/week since the surgery. The second child, also a boy, had the procedure done when he was 5 and his feet turned so badly inward (pigeon-toed) he fell constantly and could not walk on any surface that wasn’t perfectly flat and was still in diapers. Now, even though his feet are still turned inward, his balance has improved amazingly and he can run up hills, curbs and run and jump and is now potty trained.
All the parents had intense praise for their respective surgeons.
Now What?
Here’s what I know: Elena is a good candidate. She’s great with PT. She’s had to get used to new legs twice already (post-botox) and did fantastically. She’s had three surgeries already (eyes), and isn’t nervous about doctors b/c we are honest with her when she asks questions about her operations. I was on bedrest for 2 months, and she saw in the hospital and understood why I was there, why I couldn’t move, and that I’m fine now. I know that if we do NOTHING, Elena will be alright (mentally). I also know that she absolutely will have future surgeries, to lengthen her tendons, or fuse her ankle bones, or fix a hip dislocation or something like that if we don’t do anything. She’ll probably need surgeries even if we do SDR; but SDR has the potential to alleviate the spasticity that would cause lots of future problems. I’m pretty sure that it’s not going to get easier for her to psychologically deal with the surgery or PT afterwards for many years—and then, it may be too late to avoid/lessen issues related to tendon length or joint stability. She is strong now, motivated now, young now, and her body (jointwise) is in great shape now.
Still...my girl Elena is a wonderful child. She’s happy, even though she knows she doesn’t move like the other kids. But she gets tighter all the time.
My anxieties revolve…
E's a great kid.
She moves pretty well for a kid with CP.
She's getting worse.
Repeat.
I have a chance to give her the best, most normally functional body she can have. If there is always a risk with surgery, I have a chance to reduce the number of surgeries=reduce the number of risks. Now is a good time.
I scheduled her surgery date for February 18th, 2009 with Dr. Elias. I picked him for several reasons: he was local, he was well recommended, he was conservative, he’d seen Elena several times before her procedure so he knew her functionality well, he was plugged into the PT/children’s hospital network here, UVA takes my insurance, and Elena’s friends and family and therapists are all close by.
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