Hi all,
My 13 year old son Matthew has been doing pool therapy for a month now. He had an evaluation today (not done by his therapist) and she started the appointment by berating him and scolding him for not doing enough to make progress. He works hard in the pool and has had increasingly difficult exercises and is definitely making progress, but she was upset with him for not walking on it out of the pool as much as they would like. (He takes 4-5 steps between the shower room and the pool when he gets in and out, which takes him quickly to a pain level 6 or 7.) She basically told him that he would not be allowed to continue to come there for therapy if he didn't start working harder and showing more progress. The nicest thing I can say about her without using nasty names is that she lacks people skills. If her goal was to leave him discouraged and defeated, she succeeded. What do I do? I don't want to subject him to that again at the next evaluation. His physical therapist has started building a relationship with him, and can get him to do things that I can't at home. So I don't want to end that, either. So frustrated! My only other options are to drive 45 minutes for a pediatric pt place at U of M, or admit him to Cleveland Clinic for two weeks, which we're hoping to avoid needing to do. I need advice, this is so beyond discouraging.

Maybe a private one on one talk with the person? or the manager of the place ??

Not cool to treat a kid that way...

Oh how frustrating and honestly dissapointing this makes me in our pt specialists!! I'm sorry you and your son are going through this!! I commend your ability to control yourself and not tear that person a new you know what...

Can you talk to the doctor and see if they could communicate with your son's pt and relay just how innapropriate that was!!! I could not immagine how discouraged I would feel if I was talked to that way!!! grrr that just gets my blood boiling!!

Will keep you both in my thoughts and prayers!!!

Dawn

If you have an opportunity to send him to an inpatient program, I would highly recommend you do so. Kids have the best opportunity for remission and the success rate at these programs seems to be good. And this opinion has nothing to do with the review. Get him the best care possible as soon as possible.

As a side note, I had a physical therapist that tore the internal stitches in my knee while I screamed when I was 12. A good pt will push you to do your best while understanding your limits. Working with children IS different than working with adults--their bodies are different and depending on how they respond to adults, they might not be able to protect themselves when pushed too far.

I was unclear who performed that review exactly?

Seems like it was someone else at the treatment place??

[He had an evaluation today (not done by his therapist)]

Talk to his physical therapist and say you feel you have no choice but to make an official complaint unless someone else does the evaluations

Swimtime,

So sorry to hear what happened! That's just terrible. I agree with going for the highest and best level of care available. However, I would want to be absolutely sure there wasn't anything in that ankle they've missed. I don't remember if your son had follow up imaging after his surgeries. Sometimes things don't heal properly. Also when he walks on land does he use any kind of assistive device? Having had 3 foot surgeries and been on crutches 9 months I can attest to the difficulty progressing to full weightbearing, the need to take it slow and the various pains that starting to walk created. There really was no pushing it. I went from full crutches to one crutch to a cane. No way I could have gone to straight walking! That would have been intensely painful even for a few steps. My foot and ankle simply were not ready and still had remodeling to do. Slow methodical progression does pay off, I can walk a mile now most days and do fine in the grocery store etc. Tell your son that person is officially a butthead. It takes courage and grit to go through what he is, he is a strong and remarkable young man doing what is needed to get through a difficult challenge. It is vitally important that he recognize his body's limits, pushing too much may cause regression or injury. Only he can make the determination of what he can handle on any given day.

Keep up the fight, I am Sending extra Healing Love,
Littlepaw

BTW, this definitely falls under a legitimate patient complaint. Take it to a higher level or patient rep. The evaluator had no business doing that and someone at the establishment should be appalled and outraged on your behalf. It sounds like your son has a good relationship with the therapist and nobody should get in there and blow that. I am so confused by the whole thing. Yes PT has protocols, etc but it sounds like he's making progress. Not sure what they expect or what happened to individualized treatment plans...

Hi Littlepaw,

I am trying to figure out how to regain function in my CRPS foot. I was operated on last May, but so far have made no progress. Two weeks ago after getting my pain more under control for the first time I tried again to establish a movement routine, this time walking 15 minutes every hour for a total of about 2.5 hours a day. I had good days, then some good & bad days, and then everything went to hell.

I remember reading that you wrote somewhere about how it is imperative to retrain the autonomics when you've had surgery on the LE. That you first (?) let your foot hang down for five minutes an hour. Did you start doing that first before you started to do anything else. And, if so, how did you build it up, 10 min. an hour, etc.

So far I also haven't been able to reintroduce the pool. This has always been my life savior, especially with my first bout of RSD. Did you have a method for introducing it, too.

And last but not least, I saw that you are walking up to a mile a day now. Hip, hip, hooray!!! How did you introduce weight baring walking? Was there a method to your healing madness?

Don't mean to pepper you with so many questions, but I can't find a PT who has worked with CRPS where I live. Every time I try to introduce walking again my toes swell up like two fat piggies and they burn like they are on a grill.

Thanks,
Darcy

[QUOTE=Darcyreid;1128281]Hi Littlepaw,

I am trying to figure out how to regain function in my CRPS foot. I was operated on last May, but so far have made no progress. Two weeks ago after getting my pain more under control for the first time I tried again to establish a movement routine, this time walking 15 minutes every hour for a total of about 2.5 hours a day. I had good days, then some good & bad days, and then everything went to hell.

I remember reading that you wrote somewhere about how it is imperative to retrain the autonomics when you've had surgery on the LE. That you first (?) let your foot hang down for five minutes an hour. Did you start doing that first before you started to do anything else. And, if so, how did you build it up, 10 min. an hour, etc.

So far I also haven't been able to reintroduce the pool. This has always been my life savior, especially with my first bout of RSD. Did you have a method for introducing it, too.

And last but not least, I saw that you are walking up to a mile a day now. Hip, hip, hooray!!! How did you introduce weight baring walking? Was there a method to your healing madness?

Don't mean to pepper you with so many questions, but I can't find a PT who has worked with CRPS where I live. Every time I try to introduce walking again my toes swell up like two fat piggies and they burn like they are on a grill.

Thanks,
Darcy[/QUOTE

Hi Darcy,

I am still at this rehab thing. My only secret is extreme pig-headedness and a willingness to take the long view. I had one doctor say this could take a year to two years and I've gone with that. I am just relentless about getting better and will accept any improvement I can get and build from there. My method requires being happy with gaining 5% or less or at the very least not losing anything. Minimizing loss and setback is actually a gain.

Start slow!!! Two weeks isn't very long and fifteen minutes an hour is a lot. I always started with five and went from there. Sometimes I had to adjust down. I was happy when I could walk fifteen minutes all at once, but only once in a day. That was after countless visits to the gym doing an elliptical called an ArcTrainer that scissors the legs without ankle movement. Very slow steady progression has been key for me. Lots of foot exercises, toe flexing, circles, alphabet etc. My foot did NOT want to be down, it would hurt. It was my surgeon who said I had to start putting it down, five minutes at a time. Initially I couldn't do this standing (blood would pool, ouch) so I would just sit and let it rest down normally. I went from two crutches to one, to cane, used a walker for a while which helped gain heel to toe movement without so much strain. The right shoes and cushion make a difference. I had to let go of the fact that sensible shoes I wore before that ought to be comfortable just weren't working with my new mechanics.

Bummer on the pool! Is it the temperature? I started in a Y kids pool heated to 88. Now I tolerate all temps which I accomplished by putting my foot in the sink at incrementally colder or warmer temperatures. Still can't do super hot for too long or I swell which is uncomfortable. My best advice is to push as a way to test your limits but not to the point of misery. You will have good days and bad days. I still do. Just aim for getting a little better at a time and listen to your body. It is really hard to restrain the impulse to overdo but I would've really backtracked multiple times if I hadn't. Lastly, love on yourself and that foot. Find a pain therapist if you need. I did and was really glad, she helped immensely with feelings of loss and despair. Should've gone sooner!

My mile came slow, after making it down the drive, next door, to the mail box, etc. Be relentless, don't give up even when you don't seem to get anywhere. You are at least preventing atrophy and keeping mental and physical strength. You WILL progress, you know that from the two weeks no pain then walked too much business. PM me if you want, I don't mind questions and take care.

Sending Healing Love,
Littlepaw

After months of PT I was released from it because there was no progress. At first they thought I was stopping at the same time on each exercise intentionally. So they put another person there to engage me in conversation so I couldnt know what count I was at on the exercise.

After a couple of weeks of that they realized that no matter what the leg and foot gave out at the exact same number of reps for several months with no progress. So it was useless to them to keep me there.

That said.....It didnt stop me from working at making progress. It is very small gains over long time spans, but gains none the less. I am not the same as before RSD, but I am miles ahead of where I was at first. Even if they decide to stop, doesnt mean you have to stop.