Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

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Old 03-04-2015, 10:27 PM #1
swimtime swimtime is offline
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Default How do you measure "enough" PT progress?

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.
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Old 03-04-2015, 11:09 PM #2
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Maybe a private one on one talk with the person? or the manager of the place ??

Not cool to treat a kid that way...
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Old 03-04-2015, 11:11 PM #3
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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
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Old 03-05-2015, 12:52 AM #4
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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?
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Old 03-05-2015, 01:39 AM #5
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Seems like it was someone else at the treatment place??

[He had an evaluation today (not done by his therapist)]
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Old 03-05-2015, 05:47 AM #6
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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
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Old 03-05-2015, 09:41 AM #7
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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...

Last edited by Littlepaw; 03-05-2015 at 03:50 PM. Reason: Spelling
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