Well, here I am about a month into the school year. A month since we basically shut down a lot of Elena's schedule, so she could get used to the changes related to starting First Grade.
Here's what was removed from the schedule (more or less):
-Feldenkrais 2x/week
-bike ride/playground 1x/week
-art class 1x/week
Here's what was added (more or less):
-hippotherapy 1x/week (not really, but the horses get the month of August off)
Here's what changed during this period:
-E has to go to bed promptly by 815pm, up at 620am on school nights (bedtime remains the same on non school nights)
-E is in school (obviously) and has an aide to help
-E has PE 4x/week, and recess daily (not sure how much the aide helps in either of these cases)
-E got KiddieGait braces (rather than her DAFOs)--lighter, a little more flexion with the KGs
-E has learned to run (with and without her crutches)
-the focus in E's PT has been, more or less, away from CME. They have been trying some new techniques (Kinesiotaping) and evaluating her short/long terms goals (many of which are related to independent movement while wearing her braces and shoes)
Here's my big observation.
Elena's gait/stance looks WORSE.
She seems to
1) toe-in more often on the right side
2) weight bearing in standing is decidedly on the left foot
3) right knee/hip caving in more often and more pronounced, when walking or standing, especially when NOT wearing braces and shoes
4) confidence is lower when walking without a handhold (especially without shoes and braces)--immediately falls or whines about falling in the morning. In the evening she might not fall as much--but she's WAY on tiptoes
So, here I am wondering what key element(s) is (are) currently missing to account for this relatively abrupt change. My first thoughts are
1) Elena loves to go fast now. Faster movement is going to involve more spasticity--so her stance will look worse. I understand that, but it doesn't explain why her slow movements look bad.
2) I wonder if she's "coddled" at school? Meaning, if she whines, or is tired, she gets a ride or gets things brought to her rather than do it under her own power? She says her "right leg is weak" a lot now--as if that excuses her from using it. Sorry kiddo, not going to work with Mom.
3) I think E needs more CME. This is BY FAR my favorite therapy, and I've been slacking off at home and her private PT hasn't been doing much of it as late. I will devote some time to this (time to get creative so E will agree to home PT sessions!)
4) Do I need to get Feldenkrais back on the schedule? E loves the practitioner--but realistically, it's going to be HARD to get that squeezed in 2x/week.
5) Could this be related to growing?
I know a lot of you out there try to balance life and therapies--how much is too much? What kinds are important? How do you know if they are doing anything for your child? I guess the best way to figure that out is to remove it from the schedule and see what happens. So far, I'm not liking my decision to do this. Time to add one (at a time?) back in (by magically making more hours in a day??), and see if that makes a difference. Super.
Thursday, September 29, 2011
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8 comments:
I tend to be one who believes therapies are very important. Callie (my almost 4 year old w/sdcp) is in a very intensive neurodevelopmental therapy program. We only see them 3 times/year, but they give us 4-5 hours/DAY of things to work on with her. It has made a HUGE difference. The proof of that to me is from taking 2 months off this summer...we lost a lot of ground!
My #2 therapy for her is cranial sacral and neuronetworking. He is amazing with Callie, and we see instand results! She walks out better than she walks in to his office!
Callie sees a pt 2 times/month, who then gives us things to work on over the following 2 weeks.
I also see a difference when she is able to ride a horse...so we try to fit that in.
These are the things that work for Callie though - I think each is different and each individual may respond better or worse to each type of therapy. It also has to fit into the schedule for the rest of the family and the individual, which can be a challenge in itself!
We consider Callie's therapy to be her school...and since we homeschool, that works at our house!
It sounds to me like you have a really great handle on how E is doing and what works well for her.
I personally recommend that you go back to Feldenkrais. I´m an adult with CP and I´ve experienced that therapies which develop bodily awareness are of the greatest help.
Veronica
TO THE LAST COMMENTATOR.. I AM ALSO AN ADULT WITH CP.. WHAT TYPW OF BODY AWARENESS THERAPIES HAVE YOU TRIED? TRADIONAL THERAPY I FIND DOES NOT WORK AS WELL
THANKYUO
MELISSA
Dear Melissa, I've been practising eutony (Gerda Alexander's method) for 20 years now, and in these past 5 years I've trained to become a practitioner. I've also tried some Mathias Alexander - after 18 years of traditional PT which wasn't good.Feel free to email me at verokostov@gmail.com if you want to.
Veronica
Dear Melissa, I've been practising eutony (Gerda Alexander's method) for 20 years now, and in these past 5 years I've trained to become a practitioner. I've also tried some Mathias Alexander - after 18 years of traditional PT which wasn't good.Feel free to email me at verokostov@gmail.com if you want to.
Veronica
Hello, I'm an adult with CP and my first thought is maybe she's tired. She's doing a lot and learning a lot more as well as adjusting to another setting. Another thought is that if she has trouble with her right hand side, she might benefit from using a cane with her left hand, which could stabilize her right hand side. You use the cane on the opposite side from the area of weakness. I have hemiparesis which is not as serious as hemiplegia. I don't look like the pictures of people with hemiplegia who often have very obvious differences on muscle tone on one side. However I have enough of a problem that I've started using a cane and I find that helps. It could be that her right side is somewhat weak, enough so that she can do a lot but under conditions of pressure or tiredness, she has some difficulty. It might be worth discussing with her doctors. Does she have trouble standing with both feet stable on the floor? that was one of my problems. take care.
Here's a link, it focuses on stroke but mentions CP also - obviously I'm not a doctor and anything you find would need to be thought through and discussed with professionals. However I'm including it b/c I've found books on CP tend to talk about hemiplegia which appears to be a more serious condition. Also, growing up I could have used this information but it wasn't available (to my knowledge anyway.) I don't know what therapies would be useful, if any, b/c this is focused on stroke. I also find that sometimes my symptoms are worse than others and it depends on things like overall energy level, not just physical state. take care.
http://www.stroke.org/site/PageServer?pagename=hemiparesis
Maybe she needs to do a little bit less, not more. School in itself can be exhausting, especially when she's trying to "fit in." She could just be overloaded and tired. Therapy is important, but she also needs time to relax and do normal kid stuff.
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