An interesting patient

I should write a case study about this one, but based on my current workload- it's not gonna happen. She's been a fascinating patient though.

15 y.o. female, no significant medical history except for a very mild case of asthma. Last fall (I don't remember which month) she had an asthma attack that required treatment so she presented to the ED and was given an albuterol treatment via nebulizer. She also had a migraine so they treated her with I don't know what.

Shortly thereafter she started experiencing left sided weakness and severe ataxia of the left arm.  A few months later she had another asthma attack, had another neb treatment and had the same thing happen to her right arm. MRI of the brain was clear, a year or so before she had been having neck pain and they did an MRI of the c-spine which was clear. No other imaging done. She had seen 2 neurologists, a PM&R specialist, and an orthopedic surgeon. She had previously been treated in PT and was performing ther-ex to her UE's and LE's, with no effect and possible worsening.

She presented to clinic with a rx for PT eval and treat for left sided hemiplegia, possibly psychogenic (and OT which she cannot presently get due to the wait list). When she came into clinic she was noted to have slight ptosis of the left eye, shuffling gait pattern, and holding left arm in flexion synergy (however, not due to tone) in order to decrease pain and control ataxia.  AROM in left arm was extremely limited due to severe ataxia and pain that radiated into her spine. PROM was WNL at elbow and wrist, but painful in joint and radiating to spine, shoulder range limited to below shoulder level. No tone noted with PROM. LE movement, both active and passive cause severe pain in lower spine and she was only able to hip flex for shuffling, sit and stand, and slightly move ankles in plantarflexion/dorsiflexion (and I mean slight). The therapist previously had not done any work with her spine per report and had not "asked as many questions as you are asking". Neither heat, nor ice was reported to decrease symptoms. She had continual headache and neck pain and extremely limited ROM in her c-spine, especially painful with left rotation.

After a very thorough history, some poking around and a general assessment, I decided that she could come for therapy 2x per week and I would start with soft tissue work. In my head I was freaking out.  What the heck?  This was definitely not in any of the textbooks that I read!! I'm not sure why the doc thought it was psychogenic other than that they had no clue what triggered this response. But she was NOT faking it (there is no way that you could possibly fake the ataxia she presented with) and there were absolutely no reports of any kind of change or stressful trigger that would have caused this. She did not present as high strung, stressed out or emotionally distraught even though for 6 months she hasn't been able to move right or shower, do her hair, or dress on her own. I would definitely label it idiopathic, but I don't know how it could be psychogenic.  For a truly psychogenic presentation with her physical presentation she would have had to have some kind of major stressor or trauma to trigger it and she reports none.

So- I started with extremely gentle soft tissue mobilization to neck, back, shoulders. She was exceedingly sensitive to any kind of mobilization and the first session or two was essentially desensitization. She had extreme pain with the massage that would gradually dissipate, but could not tolerate deeper pressure initially. Initiated trigger point release, again so gentle it must have been releasing the fascia not the muscle because the touch had to be so light. But after the first 2 appointments, there was a noticeable increase in LE movement with walking. She could pick up her feet slightly.  For HEP she has been doing gentle ROM (not stretching) to c-spine within tolerable range to joint lubrication/mobilization/nerve "glides"/ anything!! and blood flow. Gradually I have been able to increase depth of soft tissue work and expand to include all areas of neck and back and have worked on craniofascial musculature (which was just as painful if not more than other muscles). Added PROM to bilateral LEs for flexion of hip and knee to stretch low back and loosen up tissue there because she had nerve pain with that movement also.  A week or so ago a physician prescribed an anti-inflammatory/muscle relaxant for her (thank goodness!) and her symptoms have improved dramatically.  She can now move her arm in a limited range without ataxia or pain to the spine. She is able to ambulate short distances with a near normal gait and she was able to stand up long enough to shower standing instead of sitting! [The first time that she was able to stand long enough to stand at the counter and prepare a bagel for herself was a huge success. She hadn't been able to do that in months!).  She is assisting with her left UE for dressing now and is sleeping (forgot to say that, she wasn't sleeping almost at all).  Yesterday I was able to work on her shoulder, previously impossible, and even do some grade I/II mobilizations to decreased the joint pain in her shoulder.  She continues with neurogenic pain with nearly all movement, but we are gradually able to work into positions to provide mobility to her nervous system.

It has been such a crazy experience.  It started with a shot in the dark, but appears to be working! I have no idea what caused this, but somehow her entire nervous system was not functioning properly and she ended up with severe myofascial tightness and spasms as well as immobility of her nervous system.  She is talking about going back to school next month (for the first time since this all went down)! It has been a crazy adventure.  There is still a lot of work to do. I am sure that she is extremely weak on her left side and hopefully with decreased pain we can start addressing that and other impairments.  

It's terrifying to work with someone where you really have no idea what is going on and to be playing by trial and error based on the reasoning skills that are tucked away in the brain somewhere, but it has also been rewarding to see what a huge impact I have been able to have with very basic skills.

And more than anything, this with other experiences has taught me more than ever to look at each patient as a whole person. Her complaint is in her extremities, but not really- it's really in her spine, and really this has got to relate to the center of her body- her core, her spinal cord, her spine- because of how global it is.  It makes me sad to hear stories of patients who go to a PT who only looks at one thing.  Why didn't the first person she saw look at her spine since she has radiating pain into her spine with any movement? Why force a person to repeatedly do activities that just cause more pain?  I don't know.  I don't have access to modalities at this office that decrease pain except for my hands and ice cubes (which is another story), but so far it hasn't taken anything fancy- some $1 baby oil and my hands and her life is continually improving. If ever I doubted the importance of wholistic care (which I didn't), I certainly don't doubt it now.

Almost a year...

It's been almost a year since I posted, but I decided this year that I need to write more about work.  It turns out that my profession is really emotionally involved and takes a lot out of me.  Except that I can't show that at work. I have to maintain my professional relationships and demeanor and so...there are tons of things that happen and that I get involved in that I just kind of stuff away and never get to process.  I decided that I think writing will help me.  Today is probably just a sad story sort of blog because there have been a lot of things on my mind that are super sad. But not all my posts will be so sad.

Ok- birthday wishes-
I met a girl who was 10 years old.  I met her the day before her 11th birthday.  She has osteosarcoma.  She was in the hospital for surgery on her leg- they removed all of her tibia except the last two inches or so. They replaced it with a metal substitute and then added a metal joint to the end of her femur to essentially make a knee joint. She has lost all her hair from chemo. The day I met her, she was very sad.  She had an epidural in her back, a couple of IVs, and a foley.  She was so afraid her foley would fall out. Her birthday wish- to be able to sit in a wheelchair and go downstairs (off the unit) for her birthday party.  The visitation policies right now are extremely strict because of the flu and RSV and so her little sister and her friends couldn't come see her.  The first day I saw her, we tried sitting on the edge of the bed.  It was the first time she had been up since her surgery and it took 3 or 4 of us to actually make it happen.  The next day was the wheelchair. I won't lie- I was really nervous.  I didn't know if she could tolerate it for a minute let alone a couple hours for her party.  But she was a trooper! We walked in and it was a different girl.  A birthday girl. She had cute new earrings and was all smiles.  Even though she was so scared, she let us put her in the chair and even helped move and position herself.  She was amazing.  And two hours later she was still up and at her birthday party. Opening presents, smiling and enjoying her family and friends.  It was a beautiful scene. I look at her and think how---sometimes you have to grow up so fast.

Firetrucks and Ladders-
I have been treating a 3-year old boy with cancer- I think it is histiocytoma. He is so precious.  The first time that I met him we put together a puzzle of a firetruck.  Then he showed me his toy firetrucks and his toy ambulance. I mentioned to his mom and grandma that I saw a firetruck on the Saturday before putting the ladder up.  His mom quickly explained to me that they came for him.  His daddy had called a couple of fire stations to see if one of them would bring their truck with a ladder and climb up to his window.  Apparently both fire stations got back to them and they just had one come for now.  They drove the fire truck up to the building and put the ladder up to his 5th story window. Apparently they came up and waved to him and he showed them his firetruck through the window.  While they were there, they went down the row of kids windows to say hi. He loved it. When I saw him he was pointing out the window and saying "ladder", "ladder".

Since then I had seen him a couple of times and every time he just charms me.  He likes to stand on the "bench" that is by his window and see the cars pull into and out of the parking garage, and down the busy street.  He watches for ambulances and when they come by he says "ambulance", holds up his toy ambulance to show through the window and says "sick, sick".  His mommy says- yes, they are going to help someone who is sick! On Thursday he showed me his new car track.  It hangs on the door- which his mama loves cause it doesn't take up floor space. He has two buckets of cars- one to catch the cars when they get to the end and one to put the cars onto the car track. He would squat down and pick up the bucket and hand it to me, then choose a car and put it on the track.  Later he was playing with his airplanes and helicopters. He would "fly" them and "crash" them (so then he would have to squat to pick them up).  It was so sweet.

As I talked to his mom my heart sort of broke. For one, they live about 45 miles or so west and her husband is in the marines so he works quite a ways south of the hospital.  With his commute into work and the amount of time they spend in the hospital, they are going to have to find somewhere to move because they can't do all the driving they are doing now.  I asked if she knew when he was going to get to go home this time.  She said she had no idea, but from the reading she has done, the kids who actually make it through this kind of cancer are usually hospitalized for at least 6 months in order to get the treatment they need.  Apparently last time he tried going home after a course of chemo, he didn't do well at all and so now...he's just in the hospital. 7 weeks down...who knows how many to go.

How very mortal we are and how fragile is life.  I can't imagine watching my child play everyday and not knowing if he will be here next year. I can't imagine watching him have to go through treatment so intense that it just makes him ill- nearly kills him- in order to try and save his life.

Friday nights- just over a month ago I started treating a two year old (whose birthday to turn 3 is tomorrow!).  He is SO cute.  He has a heart disease and another genetic disease that are both very rare and basically unheard of in combination.  He has about as many doctors as I have family (which is truly saying something). His mom is so kind and so loving and so amazing. Unfortunately, very soon after his birth, his father left them. So now she's a single mom doing this alone.  She can't work because she has to take care of him.  I don't know how she makes it. I don't know if she does either. The week that I saw this cute little boy the first time he made me happy.  He smiles and plays and can't but definitely lets his personality shine through. And it's a very happy one.  Mom and I were talking about his medical diagnoses and basically his last ECG showed that his is nearly always having seizures.

The next week, mom came in and told me that the Friday before he had this massive seizure.  His O2 sats drop when he has seizures, and so she and the nurse ended up having to do CPR. Trip to the ED- she said to me...I thought it might be my last day with him.  But no- the next week he was back to normal.  Now this has happened 3 of the last 4 weeks. Three of the last four Fridays she was in the ambulance with him riding to hospital, sobbing because she thought he was going to die, right there in her arms. I just...I don't know how she even does it. I don't know how she finds the strength to stay put together. I guess she does it for him.

Today she was telling me about her boyfriend's daughter and how sweet she was.  She was at the house last Friday when the seizure happened and after they loaded mom and boy into the ambulance she said to her daddy- can we kneel down and pray for him? So she prays for him every time he gets sent into the ER- and even comforts the mom- patting her on the back and saying "it's ok. He'll be ok".  Mom says that her boyfriend is very open- they are all very open. Any day could be her sweet sons last day on this earth, but that's ok. Everyday he is here is a blessing to us. She also told me that this man's daughter decided on her own that when she participated in jump rope for heart she would raise money in this little boys name. She raised $450. I almost started bawling when she told me that. Life is so hard. So hard. And yet people come through and are so strong and amazing! It breaks my heart and gives me strength all at the same time.

Breaking the bad news-

I have another patient- a young girl, who has a very rare disease called Pompe's disease. Her parent's wrote on her intake for that "she is one of the first survivor's of Pompe's disease and maybe the only girl". Over a year ago she had some kind of fall and she's lost her ability to walk. Today dad asked me if this was her disease getting worse (because it is degenerative) or not. I had to tell him that yes, I think that she has dengenerated since the fall. I don't think she will ever be as functional as she was before that- but I think she can make progress.  I do believe that. I think she can progress. But my heart is kind of breaking because the more I work with her, the more I wonder how much progress she will make.  I don't think she will ever walk on her own again.  I hope she will stand. I hope she will do a lot of things, but...things don't look terribly hopeful.  How do you tell that to someone, but also maintain enough realistic hope? It's so...bizarre. It still makes me feel so weird that I am involved in people's lives like this. I help make or break their dreams.


Whew- that's enough for one night. I have some really interesting cases right now that are worth writing about. I need to start writing more. Get out the experiences that I have. They aren't even my experiences. They don't belong to me. They belong to these families and I just observe them. I just experience a fleeting moment but somehow, they burn themselves into my heart.

The sweetest thing...

On Friday I was treating a two year old boy.  I was sitting behind him, he was sitting between my legs. The OT who I was co-treating with was sitting in front of us to help him play with a toy.  The toy we had out was a cash register and it had different shapes for buttons.  One of the shapes was a heart (it's a Disney Princess cash register), so the OT said "Where's the heart?"  This little boy pauses and then puts his hand over his heart on his chest to show us his heart.  It was absolutely precious.  The OT said "Good job. That's right, that's your heart and did the same thing to show where her heart was.  So this sweet boy turns around and puts his hand on me and says "heart" to show me where my heart was. So priceless.  It was adorable.  Clearly this two year-old has spent too many months in the hospital where he has nurses and doctors listening to his heart since he knows where his heart is in his body, but doesn't know the shape. :(

During this same session, the fire alarm went off which includes a very loud bell and flashing lights.  It scared this child to pieces.  He was about to get frantic, so I held him close and said to him really quietly that everything was ok and that the bell is ringing, but I would stay right with him, so everything was fine.  I pointed to the bell and showed him where it was coming from.  It only lasted a minute at the most and he was more than a little jumpy, so we told him it was "all done". I kept holding him in my lap and we continued playing, but periodically throughout the session, he would turn his head toward the alarm and say "bell all done?".  It was so cute and so sad.  That thing scares the kids so much!

More stories

I decided to continue blogging. I want to somewhere document things that I remember.  I have a lot of catching up to do, but for now...I'll just include recent.

One reason I love my job is the opportunity to love children.  I see so many children who need so much love.  They have so many challenges to face.  I know that they will not get the love and support that they need in life. They have so much strength and resilience.  They demonstrate so much love, so much joy. They are amazing.

So yesterday, one of my little friends was having a hard day.  I will call him Wayne. Wayne had a symes amputation recently.  He has had severe problems with wound healing, scarring, stump shaping, closure of wounds, etc.  He's been walking around like a rock star! He's so awesome.  He is two years old and as soon as we stood hip up to start walking, he walked. He was ready as every. Never mind that he is missing his foot- he's ready to play!  He's a blond hair, blue eyed, beautiful boy!  So yesterday morning I went to go see him at 8 in the morning.  I like to go get him first thing, right before breakfast. I change his diaper, get him dressed and go and play a couple days a week.  I walked into the room to get him and he was sitting in bed in his onsie saying "Uh-oh. Ow-ie. Uh-oh. Uh-oh. Owwie!" and pointing at his residual limb (it was uncovered which is unusual).  So cute.  I couldn't get him in the morning because his dressing had been soiled and he was waiting for a dressing change. The nurse also informed me that he had been running a fever, had an ear ache and was throwing up all weekend.

In the afternoon, I went to pick up another patient who is in the same room.  Wayne was in his crib, looking quite miserable.  My patient wasn't in the room, so I went over to give Wayne a hug.  I picked him up and he just laid against me giving me a huge hug.  He just laid on my shoulder and I held him for about 10 minutes.  They are afraid that he has osteomyelitis so they planned to transfer him to an acute care hospital.  After 10 minutes, my patient became available so I had to go and treat.  I put Wayne back in bed and told him to stay there and that I would come back in a little while.  He was remarkably calm and by the time that I got back he was asleep.

About an hour or so later, I was in the room to get another patient. Wayne woke up from his nap, saw me and just starting calling to me "pay, pay pay"...how he says play. He was so sad and pathetic.  I was about to take him with me to play while I treated this other patient, but the ambulance transport arrived to take him to the other hospital.  I said "Look Wayne. You get to go for a ride! They came for you."  He just melted away into tears.  I scooped him up and held him and tried to talk him into calmness. I told him his momma would come and see him at the other hospital and he could go ride and that he would be ok. Oh, it broke my heart!  What I would have done to be able to ride with him and take care of him.  The EMT was great and started distracting him and talking to him.  Rarely in my life have I felt such love for anyone outside of my family.  I think I try to put up a bit of a wall between me and the kids. It just hurts to much to become too attached.  But I love him so.  He has involved and very loving parents. But he is so alone right now.  It breaks my heart. I want to bring him home and make him mine.  I want to give him all the love and joy and benefits in life that I received. I love him oh so much!

TMR

Been using this technique on some of my kiddos.  One of the therapists took the class.  Very interesting.  It's similar to strain-counterstrain treatments.  That's where the original idea came from
http://www.totalmotionrelease.com/index.html

"Insidious Toe-walking"

I hate insidious toe-walking.  Some argue that there is no such diagnosis.  If a child is toe-walking, there is a reason. Something is wrong if they are on their toes.  Let me tell you, some kids, it is so dang hard to tell why the heck they are toe-walking. It makes no sense.  I had an onslaught of toe-walkers come in.  Three evals in one week (which is a TON for the setting I am in by the way) and they are all toe-walkers.  Only one of them appears to possibly have any sensory issues and she is 13. 13 years old and just now she finally got sent to PT because she is toe-walking.  Her pediatrician has been telling her mother since this girl was 10 months old that she would grow out of it, the orthopedic who saw her 4 years ago told her to do calf stretches.  Seriously? What 9 year old kid is going to do calf stretches everyday, especially when they hurt.  This girl is in a ton of pain.  Whatever. So frustrating.  She ended up seeing a different orthopedic surgeon this last week and she is going to have surgery. Which is good...but anyway, back to toe walking. Another little girl comes in- she's almost three and not only does she walk on her toes, she walks on her tippy toes- like a little ballerina without toe shoes. She has the ability to walk flat footed, but as she fatigues she goes higher and higher up on her toes. What the heck? And then, the other girl is 6 and the first time I treated her after the eval, all I had to do to get her to walk with heel-toe progression is put a "squeaker" on her foot so every time she put her heel down it makes a squeaking sound and she walks heel-toe for the entire session.  What in the world? I don't understand toe-walking.

Poop

Poop.  I hate poop. And yet...poop is an integral part of my daily life. Why?

1. I am human. I have to poop. It's unfortunate, but true.
2. Pediatrics. Ah pediatrics. The kids poop. We have one who my CI explained to me (before I met him) that basically he is constantly pooping because he was a conjoined twin and his bowel was incomplete or something so he has no muscle to control it. So, what comes in comes right back out. These poor kids. It can't be any fun at all and I don't say it to be mean, but man. Poop. Yuck.
3. I think at least half of the kids I work with are in diapers. If they poop during or before therapy we have the privilege of changing it.  Poopy diapers go out in the garbage can in front of the clinic. One time we tied the diaper in a grocery sack, but there was air caught in it.  I didn't have to actually change the diaper, but I was the one to take it out and it almost didn't fit into the garbage can (it's one like you find at the park that has a top on it and openings to stick your garbage in).  Oh I was so dreading having to untie the bag and let that odor back out. I made it fit.
4. viruses and germs.  We had one mom call in today and told us that she was going to pick her son up from school because he had diarrhea. She was calling to see if she should bring him in to therapy today.  Uh...how about??? NOOOOOO!!! First, if it's a stomach bug, we don't all want to be pooping all day (see the next comment for more information on that) and second we don't want an accident.  Can I emphasize that?? We don't want an accident.  It happens. Poop happens. But let us be honest. I don't want to be cleaning it up from our gym floor. 
5. My CI is the manager of our clinic. As such, she has her own office (everyone else shares an office in the front).  It's great and dandy and all except that her office sits right next to the bathroom.  It's a small clinic, not a big deal right? Oh wait, except whoever built the building made a "minor" error and the bathroom is vented into the back office.  Every time that someone poops the smells just comes right in. Awesome. And then if you try to cover it up with spray that seeps right in too so you get a nice mix or apple cinnamon glade and poop. Wow.
6. Kids with decreased muscle tone or strength tend to have decreased tone/strength of their involuntary as well as voluntary muscles. This mean they get constipated easily.  Solution? Deep tissue massage to the large intestine.  Usually we don't reap the benefits of this in clinic (usually the poop makes it out after the end of their session), but it still makes poop a part of my daily life. 
7. Pooping in the front bathroom.  This is the patient bathroom.  I don't know if it's the kids of the parents, but a couple of times a week I will walk into the front office and the smell of poop is so strong from the patient bathroom that it fills the hallway too. Awesome.  Sometimes this comes from people actually pooping there or sometimes it is just the changing of a diaper.