Webster's Dictionary
Cerebral Palsy - (noun) a condition marked by impaired muscle coordination (spastic paralysis) and/or other disabilities, typically caused by damage to the brain before or at birth.
This Mother's Dictionary
Cerebral Palsy - (noun) a condition that takes your precious, flawless looking newborn, and transforms her into a child with tightening muscles, eating problems, and spastic behavior. And in just a few short years, takes her from a car seat to a wheelchair.
I can vividly remember the spot where Chris and I sat, drinking coffee and Diet Coke, trying our best to carry on a conversation despite the anxiety we were feeling. Elise was having her first procedure at only a few days old at Children’s Medical Center in Dallas. A moment to be repeated countless times over the next 8 years. What I recall most about this particular day, is the doctor coming to talk to us afterward concerning a term I knew nothing about. In the middle of updating us on her procedure, he quickly interjected the fact that Elise would have Cerebral Palsy. I’m embarrassed to admit that I didn’t know the difference between Cerebral Palsy and other afflictions such as Multiple Sclerosis, or Cystic Fibrosis. Foreign terms such as these just all ran together for someone like me, who had never faced one personally. Finding myself staring nose to nose with this new threatening diagnosis, began what I would consider the most frustrating and painful trial that Elise, and we as her parents, would experience. What we didn't know was how all encompassing this Cerebral Palsy (CP) would be to the life of Elise and to those who cared for her.
**Cerebral Palsy is not a "sickness", you can't catch it, and it is not hereditary. The cause of cerebral palsy is brain injury or brain malformation that occurs while the brain is developing — before, during, or after birth.**
After figuring out exactly what this condition would mean for Elise, it explained why she was so stiff, even as a newborn (although doctors typically don’t diagnose before the age of 2). From the very beginning, if we put her on her stomach on the floor to sleep or just stretch out, she showed an extraordinary talent. As she would cry and wriggle around, she would propel herself forward as if crawling across the floor.
Funny story…
At 2-weeks-old, we put Elise on her tummy on a blanket on the floor next to my husband, who was sleeping on the couch. (I do know all about babies and sleeping on their tummies. We had our reasons…) At midnight, I was jolted from my much needed “new mom sleep” by my husband and mom frantically asking if I had taken Elise. She was gone. They had searched the living room to no avail. I ran out of the bedroom looking for her everywhere, wondering how you could lose a newborn baby. I even opened the front door and stepped outside, fearing someone had come in and taken her. Finally, she was spotted clear across the room from her blanket, sleeping in a corner behind a floor lamp. Apparently, she had cried and cried as newborns do, and my husband had failed to wake up and comfort his helpless baby girl (as husbands sometimes do). As she wailed with arms and legs flailing, she was put into motion, crossing the living room only to reach a wall and fall back to sleep. If I wouldn’t have been there, I wouldn’t have believed it!
***If stories like this worry you, no need to fret. She is well cared for, but often provides us with some good laughing material!***
So began our journey through the devastating and ugly world of CP.
Immediately, Elise’s CP showed up in how she held her body. As a small baby, she would keep her arms bent at the elbows, and pulled up tight to her chest. Her legs stayed stiff much of the time, eventually crossing at the ankles when she reached 2-years-old. I worried about her bent arms. It was like pulling down on a tightly wound spring when trying to straighten them out.
She still prefers to hold her arms this way at times, mainly because she wants to suck on her hands. Her hands are her comfort. Because of this behavior, she doesn’t have much of a chance to loosen up or lengthen those arm muscles. So, we just deal with it. We stretch, range, massage, and even splint her arms, all in an effort to keep them as “loose” as possible. (I will write about other avenues to help this rigidity further down.)
Another big problem that we are now facing is the position of her hands. From infancy, she showed a strong preference for her right hand. Unfortunately, that meant the left hand being completely ignored, unused, and left to atrophy. Gravity, along with muscle tightness, eventually pulled that left hand out of wack, making it look as if it is broken at the wrist. We now use wrist braces to try and stave off further tightening.
** UPDATED PIC ON 8/2017 **
I wanted to add this picture to show how Elise's hand has continued to bend in. We saw her Orthopedic Surgeon about this, wondering if she should have surgery. He pointed out that Elise loves to chew on her thumb from that hand. If he were to fix the hand, it would lose the ability to turn in the direction needed for her to have access to her thumb. That wouldn't be good for her :( He also said that if it doesn't hurt her, it's probably best to leave it alone. Straightening it just for the sake of what it looks like doesn't make sense. Elise has never "used" this hand for anything other than biting her thumb or sucking on her hand. So, we are leaving it alone!
As she grew, we would pick her up and she would lay out flat in our arms, unbendable like a 2X4. She had “high tone” in her legs, arms, neck, feet, you name it. After struggling with this “stiff as a board” position that she would maintain, I began calling her “One Piece Elise”.
(Keep in mind my motto: If you don’t laugh, you’ll cry).
As a family, we have always found the funny in all situations. This was funny. Not so much when you think about the fact that she suffers from CP, but more the situation of it all. How ridiculous it looked to see us trying to bend her and transfer her from here to there. It was nuts.
Elise has always reminded me of the Tin Man from The Wizard of Oz. All he required was a little oil to loosen up his rusty, stiff joints. If only I could use a simple oil can to relieve Elise's spasticity, freeing her to walk and dance as he did!
It’s a bit ironic that both of my sons have dressed as the Tin Man for Halloween in the past. This picture of Lane being carried in his costume looks so much like his sister, unable to take her stiff costume off.
We’re REALLY not laughing now, though, as she is much larger, longer, and stronger, making it a true struggle to handle her.
(I may be smiling, but my muscles are burning!)
Reminder #3,157 that Elise has Cerebral Palsy:
We had to CUT her out of her Halloween costume this year! Her little arms were so tight, that it was like trying to get a super small outfit off of a Barbie doll. Don't ask me how I got the dang thing on her! I should have put more thought into the material when I bought it... MUST BE STRETCHY!
Nothing has improved for Elise. All that we do for her is just to slow the inevitable. She is still super stiff, forcing her body into awkward postitions. The first signs of scoliosis have recently made their ugly appearance. She is growing, which is her biggest enemy right now. I do all I can to keep her stretched and ranged. She receives TONS of therapies at school and home. I use many different tools, methods, and medications to stave off the spasticity and keep it from advancing. Some of it works, some doesn’t.
TREATMENTS
These are the treatments we have used for Elise from birth to now. Different treatments work certain ways for certain people. Depending on the child’s behavior, disabilities, cognitive abilities, and access to therapy, some see better results than others.
We're still looking for that magic oil can!
Therapy (In-Home and School)
Elise has been receiving therapy in one form or another since she was a newborn. Since we knew she was going to be severely brain injured, we were on the ball and hit the ground running after she was born.
PT (Physical Therapy) and OT (Occupational Therapy) are VITAL to Elise’s physical well-being.
Elise & her PT using a special bench to weight bear on her legs and encourage her to hold her upper body up with her elbows.
During her PT sessions, we would put floaties on her arms over her elbows to keep them from bending too much. Sometimes you have to be creative!
Elise & her PT. She has several toys that keep her interest during therapy sessions. Her favorites vibrate and serve as an incentive for sitting up, holding her head up, or just cooperating without crying.
Elise and her OT working on head control and bearing weight on her arms. She still needs lots of help to get into positions that babies achieve. This is due to CP.
CP also causes difficulties in eating and drinking. It not only affects the muscles of her arms and legs, but also her internal muscles. The muscles used to chew, swallow, and just eat safely, were weakened by her CP. She received feeding therapy for many years. (You can read more about her eating journey here.)
Baclofen (oral)
Elise has been on oral Baclofen, (a muscle relaxer), for years. She is on the maximum dose for her size, and we don't see that it helps much at all.
Baclofen (pump)
Intrathecal baclofen is a treatment used for children with spasticity and dystonia. Baclofen is a medicine that tells the muscles to relax. Intrathecal baclofen is baclofen that is given into the space around the spinal cord. This is done through a permanent, surgically implanted pump that is placed in the abdomen with a catheter (tube) that goes to the spinal cord.
The pump is a wonderful solution for many children/adults with CP. Yes, there are cases of malfunction, withdrawals, and other bad experiences with the pump, but we definitely wanted to give it a try.
Several months ago, Elise had a Baclofen pump trial. This is done before the pump is placed. The space around her spinal cord was injected with a small amount of the medicine to see how she would react. Well, she OVERREACTED, and spent the next 6 days in the hospital. The Baclofen paralyzed her bladder and put her in a comatose state for several days.
Believe it or not, we are hopefully going to try again soon. As bad as her reaction was, the alternative treatments for her if her tone is not managed better are way worse (ie: painful injections, serious and painful surgeries).
UPDATE 4/2/15:
We finally did it! Elise had her Baclofen pump placed in November of 2014. She has had it for about 4 1/2 months. At this time, since we are still working up to a dose that will benefit her spasticity, (it takes many months), we haven't seen a huge difference in her tone, yet.
I will spare you any pictures of the pump itself. Let's just say that it looks like Elise swallowed a hockey puck. Literally. It sits low on the right side of her abdomen. It looks incredibly awkward and uncomfortable, however, Elise has not shown any awareness that it is even there. (Thank goodness!) We are careful now when putting her in positions and holding her, that there is not a great deal of pressure on the pump. So far, no more tummy time! That was becoming pretty impossible because of her hips, anyway...
The most surprising and immediate change that we saw was in her overall disposition and temperament. I am assuming that, even though we do not "see" a huge change in her tight muscles at this dose/time, she MUST "feel" a difference enough to take the edge off of her discomfort.
We have seen some improvement. Before, she wouldn't have been able to lay on the couch like this without stiffening up and twisting her body around. Now, she is better able to have times of relaxation like this with our sweet dog, Tanner.
We are still in the process of finding the right dose, and we return to the doctor to have the medication increased every 2 weeks.
To increase her dose, a hand held tablet is used. The doctor places an external controller on Elise's pump, and her dosage can be increased or decreased. To refill the pump, they actually have to stick a needle into the pump through her skin. Yuk! This is done every 6 months.
It's really pretty cool, as long as you can get past the horrible thought of the whole, "My kid has a hockey puck in her abdomen" part.
Little brother, Ty, watching the doctor increase Elise's dose. I like her brothers to be knowledgable in all we do with Elise.
Botox Injections
Botox is a therapeutic muscle-relaxing agent that reduces the rigidity of muscles or unwanted spasms in a specific muscle. Botox is injected in small amounts into the spastic or stiff muscles. It begins to take effect by blocking transmission between the nerves and the affected muscles. The injection stops the signal between the nerve and the muscle, relaxing the muscle and reducing stiffness.
Elise has undergone several rounds of Botox into her tightest muscles over the years. These, too, have not shown great results.
This is us right after her first injections at around 3-years-old.
And, this is Elise just last week (10-years-old at time of this update), in the same room ready for more injections.
Phenol Injections
Phenol is a chemical injected directly into muscles to treat spasticity. It blocks messages sent from nerves to the muscle that tell the muscle to contract.
Elise has also had a round of phenol injections along with botox. She was sedated for these in the operating room because they are very painful.
We do not typically see much, if any, improvement with either of these injections. We do not do them as often as years ago.
Surgery
At 3-years-old, the spasticity in Elise’s legs had forced her into a “scissoring” pattern. Unless forced apart by us, her legs would stiffen and cross at the ankles. This made changing diapers, dressing her, and handling her all that more difficult. The tone was causing her muscles to tighten, pulling her legs inward, and her hips out of joint.
Tight adductors (think inner, upper thigh area) cause an imbalance in the ball and socket joint (hip). The result of this imbalance is a subluxation and eventual dislocation of the hip. This is the process of the "ball" moving out of the "socket."
(Source: http://gait.aidi.udel.edu/procedures/adductor_lengthenings.pdf)
That is when she had an adductor release.
This surgery gave Elise so much relief, and we were very glad that we did it!
Although she had a great outcome, the surgery landed her in leg casts. It was a challenge bathing her, changing her, and carrying her. We rigged her wheelchair for her casted legs. Worked out well!!
This is a recent x-ray of her hips. They are what you call hip subluxation. It is a partial dislocation of the hip- the ball of the hip joint is only partially in the socket. As you can see, her left hip doesn't seem to be in the socket at all. Until this causes pain, we will hold off on surgery. The surgery needed is INTENSE, so I am glad we haven't crossed that bridge yet!
** UPDATED ON 8/2017 **
This past Spring, Elise (12-years-old now) had surgery on her legs. We did one at a time and she was in leg casts for about 7 weeks each time. She had her calf muscles lengthened, her hamstrings released, and a couple of toes released. This surgery was extremely beneficial to Elise. Her legs are now much looser and more easily bent for dressing, bathing, transfering, and positioning. The amount of straitening was very surprising to me!
We weren't very well prepared for taking her home after the first surgery with her leg sticking straight out. If you look close, you can see the contraption that my husband created out of wood WHILE IN THE RECOVERY ROOM! He brought the wood, screws, and a drill to the hospital to fashion this leg brace for the chair. The nurse is holding the drill! She said that was a 1st for her :) Thankfully, I was able to get an appropriate chair from our DME about a week later!
It was hard dressing her with just one leg at a time casted. I stretched the heck out of these candycane leggings to get them on over the cast! I was determined for her to wear them :)
Equipment
Standing Frames
Standing Frames are not used to teach a child to stand. They are a weight-bearing tool for people who can't bear weight on their bones naturally. It is also good for stretching the leg tendons, and bowel and bladder function. Elise is currently on her 3rd standing frame. The Buffalo works well for her here at home. She used to have a Sit-to-Stand that did not work well for her amount of tone.
The standing frame is not Elise’s favorite activity, but she has learned to tolerate it as long as she is distracted/entertained while in it.
Elise has used a Rifton Activity Chair for many years now. It is a great alternative to her wheelchair, which she is not thrilled about being in, much less working in. These are super easy to adjust, and provide her with great support. She mainly uses this chair as another alternative to just laying down. (Ideally with her AFOs, which she did not have on in this picture.)
In her Rifton, she can be wheeled outside, play with her switch toys, and be in an upright position.
Hensinger Collar
While in her Rifton and Standing Frame, she now uses a Hensinger Collar to help her keep her head upright for working/playing.
HOPSA Dress
The HOPSA-dress provides vertical orientation, without the need for weightbearing, to children with multiple disabilities. Items with interesting textures can be placed near the feet for tactile stimulation. Later, the pulley system can be adjusted so that the child can bear weight gradually, at their own pace.
I am elated to have a HOPSA Dress for Elise. It was invented by Lilli Nielsen (lilliworks.com). It is part of the Active Learning equipment used by children with multiple disabilities. Elise thoroughly enjoys being in her HOPSA dress, and therefore, I am happy!
This is how it hangs up in her room. My husband crawled into the attic to secure it. The goal is to eventually install a track system that could allow Elise to propel herself forward and explore more of her world. This is achieved by creating a tactile wall next to the track with fun-to-explore things attached to it.
(Also, the top 3 pics and one further down of her using the HOPSA at school were from when we first began using the HOPSA dress. The shoulder ties are not properly aligned. We now bring them down to tie right above her shoulders.)
** UDATED PICS ON 8/2017: **
We quit using the Hensinger neck brace. Sometimes she hangs her head, which is ok. We encourage her to hold it up. At times, we will put on her new 90 degree elbow braces on to keep her hands out of her mouth. When wearing them, she is more likely to hold her head up and explore the toys on the toy belt.
These are currently my favorite pictures of Elise! Her legs are drastically straighter than before because of a leg surgery she had several months ago. I wrote about that in this post as an update, as well. She looks so tall and straight... a view I don't often have of her :)
The most important part of the HOPSA dress for Elise is the toy belt. We used Velcro to attach a few toys that appeal to Elise. Two are squishy and interesting to feel, and the other is a hard plastic ball thingy that she hits with her hand to make it jump around and vibrate vigorously. These toys give Elise an incentive to participate and stay active during the time she is in the HOPSA dress.
We put a tray with marbles and toys under her feet to encourage her to explore and move her legs/feet around. She does! I am also amazed at how gravity alone stretches her legs out and down to the floor.
We also are sure to put a blanket or something soft in the bottom of the HOPSA dress to prevent her from cutting off circulation at that point (which was happening).
This is Elise in her HOPSA dress at school. I talked them into getting one for her and it was a great addition to her school day.
(straps are a little high off of her shoulders, but we fixed that!)
Side-Lying Bench
This is a bench used at school for Elise. I am so jealous that they have this and I don't have one at home! I have put it on my husband's "Honey-Do" list. It is a wooden bench that is covered in foam for comfort. Although it looks like a regular bench, which would not be helpful at all for Elise, it is actually constructed at an angle. Using gravity to pull her into the inside of the bench, this assures that she does not sweep her legs to one side, allowing her to lay in a more aligned position. She doesn't fight it when she in the side-lying bench, and I believe it puts her in a pretty comfortable position, good for her spine, hips, and legs.
Chill-Out Chair
http://chill-outchair.com/
This chair is AMAZING! We do not own this chair yet. (SEE UPDATE BELOW!) This was a chair used for a trial run to see if it would be good for Elise. Before putting her in it, she was extremely spastic with some major extensor patterning going on in her bed... along with crying and whining. As soon as I put her in this chair, she got quiet, relaxed her body completely, and enjoyed herself for the next 30 minutes until the rep had to go. We hope to order this chair as soon as we can... (not covered by insurance).
(The low center of gravity for the butt is what breaks her tone and allows her to relax)
** UPDATE on 8/2017: **
We ended up purchasing this chair for Elise, and it has been the ABSOLUTE BEST THING FOR HER!!! I'm just mad we didn't find it earlier.
The Chill Out Chair has opened up the possibilities to where we can bring Elise along with us as a family. It has provided a wonderful alternative seating position for Elise when she needs to get out of her chair, stretch her legs out, and take the pressure off the areas that receive the most contact.
We take the chair to the pool, outdoor get togethers, relatives' houses, the park... It is light weight and travels easily.
This is Elise at a couple of July 4th celebrations at our church. It is outdoors and lasts many hours. Too many for her to stay in her wheelchair. We bring the Chill Out Chair, and she relaxes all evening!
Elise also sits outside in the chair. If we are all out in the yard or around the fire, she can be out relaxing with us, too.
This is a pic of Elise at our neighborhood pool in her Chill Out Chair. We swam and she stretched out and enjoyed the outdoors.
Dreama Bed
http://www.jenx.com/products/sleeping/dreama
Elise's positioning in her bed has become a major problem. Elise has become "windswept" in the last several years. Her muscles are pulling her over to one side, resulting in the beginnings of a curvature of her spine (scoliosis). As you can tell, this is only getting worse as time goes by... Being pulled this way leads to crippling effects on her joints, bones, spine, and muscles.
You can see the progression...
A couple of years ago:
Now:
She can also go into a "backbend" when placed on her back. I always dreamed that my daughter would be a gymnast, but this isn't quite what I had in mind!
The Dreama bed offers several good positions that relax Elise, while making it impossible for her tone to take over and change her position. It lays on top of your existing bed and is super easy to use. Elise was calm and happy while in this, and I know it will benefit her greatly.
NO MORE ROLLED UP BLANKETS, TOWELS, AND PILLOWS STUFFED AROUND HER IN BED! NO MORE COMING IN IN THE MORNING TO FIND HER TWISTED IN BED! YAY!
This was also just a demo. The bed is being ordered now. This is genius, and I wish I could have had it years ago for Elise.
A good rule of thumb when it comes to equipment for kids like Elise is:
The more it looks like a torture device, the better it is for my child. :)
Special-Needs Car Seat
Since we don’t have a wheelchair accessible van (at least until we win a radio contest!), Elise rides comfortably in her Snug Seat Traveller Plus.
Yes, it is hard to put her in and out of the car seat, in and out of the wheelchair, and then the wheelchair in and out of the back of the van. (I should have better biceps...)
But, I am THANKFUL for what we have, and it works.
UPDATE: Thanks to family, friends, and even strangers, WE NOW HAVE A VAN!!!
For more info, click... The Big Red Marshmallow
Bracing
Elise wears braces of different kinds for her arms, legs, hands and feet. She HATES them, but they are used to keep her body in alignment, stretch out her tight muscles, and prevent further contractures (shortening or hardening of the muscles).
Knee Immobilizers and “NoNos” to keep her legs straight and her arms stretched out. Elise can only tolerate these types of braces for a short while at a time.
This was a specific kind of arm brace we tried years ago. Turns out, it hurts pretty bad when you hit your face with your hand/arm and get a face full of metal. Not the best design for a hitter!
We joke when we put several braces on her at once. She looks like “Robo-Girl”. This is only a few out of many. It would be torture to do them all at once.
This is the best pic I have of her hand brace for now. She tolerates it well, though we have to watch how long she wears it because it will cause blisters if worn too long.
AFOs have helped with her feet over the years. They still pull in weird directions and have absolutely NO arch, but these braces/shoes keep her aligned better than nothing at all.
** UPDATED ON 8/2017: **
These are Elise's newest braces. They are for her elbows, and keep her arms at an angle that she can tolerate. Over the years, her ability to straighten her arms out has slowly diminished. These are useful for keeping her contractions from becoming worse, preventing the breakdown of the skin at the elbow crease on the inside, and also deter her from constantly having her hands in her mouth. When I want her to engage in an activity or explore a toy, it can help to put these on.
Some children collect baseball cards, dolls, or coins. Elise collects braces!
This is her current collection. We have tried many types, and finally know what works best for her.
"Alternative" Therapies
ABR
(Advanced Biomechanical Rehabilitation)
The purpose of ABR is a complete recovery of the musculoskeletal structure so that the functional changes (head control, trunk control, sitting, crawling, walking....) happen spontaneously. Only after recovery of the structure, will the functional results become visible.
We started ABR with Elise at 7-weeks-old. We flew to Canada, Florida, and Chicago to learn and use this therapy on Elise. I whole-heartedly believe that ABR works. It just wouldn't "work " for my family and our life. This therapy is time-consuming, expensive, and intense. We were sad to have to stop when we did, but we don't regret the time we spent learning and doing the therapy on Elise.
Yes, it looks odd, but we saw definite results in many different kids...
Receiving instruction from the founder of ABR
HBOT
(Hyperbaric Oxygen Therapy)
In a HBOT room, the air pressure is raised up to three times higher than normal air pressure. Under these conditions, your lungs can gather up to three times more oxygen than would be possible breathing pure oxygen at normal air pressure. Your blood carries this oxygen throughout your body, stimulating the release of substances called growth factors and stem cells, which promote healing.
Source: http://www.mayoclinic.com/health/hyperbaric-oxygen-therapy/my00829
I did over 150 dives with Elise in a hyperbaric chamber. We used several different kinds of chambers, and did eventually come to the conclusion that she was not showing enough improvement to continue. It is EXTREMELY costly and time consuming. At the time, we were willing to try it all because we were desperate to help Elise. Any improvements we saw in her quickly deteriorated, so we decided to stop HBOT for Elise after about a year and a half.
This is how I like to see Elise. Good and aligned! The right wheelchair is always important. To see a post I wrote on our experiences with wheelchairs, go here.
Although much of Elise's time is spent with bent arms, stiff legs, and an arched back, she is able to relax.
Now, if I could only get my hands on a magic oil can...
