I'll get to our return to school experience when I can.
First, let's talk knees.
Elena has patella alta (high kneecap) and has for some time. Her mobility and endurance took a big hit earlier this year, with school and homework and standardized testing. Basically, lots of sitting from January to May this year. We spent the summer getting back into stretching and different types of movement, gradually and in lots of different ways. It was great. E's range and mobility look good; her endurance still isn't as good as it used to be.
Last Friday something new happened. Elena complained of pain--which she rarely ever does--around her left knee. Left kneecap, to be precise. And not just complaining--sometimes it's miserable crying, and hurts her to walk. It's terrible. Elena rates the pain a 4 on a scale of 1-10. It seems to be localized on or right above her left kneecap. My guess is it is related to patella alta, and on her left b/c that is her predominant weight-bearing side. Basically, she carries most of her weight on her left leg, which is in a perpetual squat.
Her stance isn't new. Most of the time, she's looked better than ever--more even weight bearing, standing tall, happy (this is all observed at home). Except when she says it hurts, which is typically afternoons/evenings since Friday.
I have seen her at school and the only real difference is lots of running and more time on her left (without someone barking at her to try her right side, I guess?). My guess is she has muscle soreness due to running in gym and on the playground, and it's taken a toll since school started (two weeks) and hopefully she'll heal up. My fear is it's a CP-related muscle/tendon/bone problem, where there isn't a clear solution.
Elena has an appointment tomorrow with her orthopedic doctor.
Recent Doodle Updates
Next up: School recaps. Holiday prep, maybe. Recaps on some events.
Overall things are going well here.
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No one plans, or expects, to have a child with a disability. When this happened to us, we started a desperate search to find information relating to milestones or expectations for our daughter after her diagnosis. Most of this was fruitless. My hope is for this site to help any person or parent in a situation similar to ours.
About Me
- Amy
- I'm a work-hard, play-hard multitasking wife and mother of two. I'm lucky to have a supportive family and friends, and live in a great town for children with (and without) disabililties. Elena is my firstborn, born at 33w with moderate spastic diplegia. Vivian is my secondborn--almost at 28w, but with a lot of help, made it to 38 1/2w and developing normally; she was diagnosed with focal epilepsy at age 9.
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9 comments:
Ouch!! Sorry to hear that Elena's been having some knee trouble...hope the appointment goes well today!
I know that her doctor will be able to advise you better than I can, but as a person with SD CP, I thought I'd contribute my two cents as well, just in case it's helpful...
Starting in about third grade, I had occasional pain as well, in just one knee. It seemed to come on suddenly, and it went away after about 1-2 days of resting. Sometimes -- like Elena -- I could hardly walk, on and on those days, my mom wrapped my knee with an ACE bandage and I stayed home from school without bearing weight on it. Now that I'm in college, it still happens every now and again, but it tends to subside on its own fairly quickly!
I'm not sure if I have patella alta (no doctor has ever mentioned it to me) but I can definitely relate to her experience! At least in my case, I think that my tight muscles sometimes wreak (temporary) havoc on my knees and joints, which is annoying but not particularly serious!
As an aside, you mention that Elena rarely ever complains of pain in her legs...you might want to make sure that she doesn't have decreased sensitivity to pain in some areas of her legs. My CP is very similar to hers (albeit slightly milder), and we realized when I was about 14 years old that I feel less pain in my upper legs and lower back. I burned my back and didn't even know until my mom noticed it a few days later. Also, it takes a lot of physical activity before I feel anything in my upper legs -- sometimes the first sign is that my muscles start to shake from fatigue.
Again, it might not be an issue for Elena, but I just wanted to bring it to your attention *just in case*, because it's definitely something to be aware of for safety reasons!
Fingers crossed that Elena gets good news at her appointment today!
Ouch , sorry to hear!
As a mostly wheelchair-bound person with ST CP and Patella alta , I can definitely feel some relation.
I don't know how much of this is applicable for Elena, but sometimes the (knee) pain started for me after bending my knee too far in/by the PT while I was tired/somewhat sore.
We only knew later on that this was due to my bad circulation in the lower leg area.
Don't know if this might prove helpful, but you never know.
Hope Elena's knee gets better!
Ouch , sorry to hear!
As a mostly wheelchair-bound person with ST CP and Patella alta , I can definitely feel some relation.
I don't know how much of this is applicable for Elena, but sometimes the (knee) pain started for me after bending my knee too far in/by the PT while I was tired/somewhat sore.
We only knew later on that this was due to my bad circulation in the lower leg area.
Don't know if this might prove helpful, but you never know.
Hope Elena's knee gets better!
Hi, I work with Gregg Mozgala and continue to follow your blog. I don't know if Gregg ever mentioned this to you but we both noticed there is a slight decrease in sensation in CP. Our nerves function just fine but our brains just don't read the signals very well. It reminded me of the above comment by "K" about decreased pain because I also heard about the sensation issue from PTs. However on the flip side I have a very low pain tolerance. The slightest knee ache can hurt me very badly. Tendonitis is common in CP so I am glad that is all it turned out to be. Fantastic idea getting 2 DynaSplints. I always thought E should have 1 splint for each leg.
Elena's quiet show of strength is admirable. The fact that she gets to smile through all that is doubly so. People like her deserve the best medical treatment around, and assistance for the processes of pain management and recovery. I'm really hoping for the best in everything for her. Take care always!
Agnes Lawson @ MedWell Spine, OsteoArthritis & Neuropathy Center
I TOO HAVE SOMW KNEE PAIN AND I TOO HAVE LEARNED THAT I ALSO HAVE PETTLLA ALTA(SP?) I ALSO AM GETTING A DYNA SPLINT FOR MY ANKLE TO TRY AND GET MY FOOT BACK INTO POSTION.. ASK YOUR DOCTOR ABOUT ONE FOR THE ANKLE BECAUSE I TOO REQUIRE MORE MOVEMENT AT THE ANKLE BECAUSE RIGHT NOW IT IS VERY POOR... NO HARM IN ASKING.. I HOPE I WILL BE ABLE TO TOLERATE IT
MELISSA
Oh my! I’m sorry to hear about the condition of Elena’s knee. It seems really painful. Anyway, it's good to know that she's consulting with an orthopedist. Don’t be threatened about your fear that there isn’t a clear solution for her condition. You have to be strong for her. In any way, I hope that she's faring better these days. Thanks for sharing that! I wish your family all the best!
Derek Sparks @ Forgey Chiropractic
She has so much strength, I wish I was as brave as she has been. My knee issue has left me really immobile. It is not an enjoyable thing to have and so I know what a difficulty it has been also for my husband who has had to carry me a lot or make extra arrangements for me, thanks.
Agnes Lawson @ Pain Relief Experts
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