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Wednesday, June 8, 2011

CIDP Still "Gone" & Battle At Rehab

Yesterday morning, I still had high hopes of getting, at least, Speech/Swallow therapy to continue. I had gotten the swallow test results from February and gave those to the Speech Therapist. I thought it looked good, that Bob had indeed "progressed" since February, so you can imagine my devastation when we met with the Speech Therapist and she disagreed with me. During the first part of our session, the therapist went over the test results from February and also Bob's video from the recent swallow test, again pointing out problem areas. She told us that Bob's prognosis for recovery was "poor", that he had not progressed since February and said she consulted an "e-stim expert" who agreed that continued therapy would not help him and so she was ready to discharge him from the therapy.

This was quite upsetting for the both of us. Bob, bless him, even tried to defend himself. He told her, "I get better" and "I do good" to no avail. Watching him plead was just heartbreaking. I had to leave the room at one point, tears were welling up in my eyes and I had to get out of there just to compose myself.

I don't understand it. I have read both reports, the one from February and this new one. And though I'm not an expert, it looks like progress to me. For example, to compare the two reports (italics are mine):

Feb. report: "There was severe impairment of the oral phase."

    June report: "Oral phase of swallow shows mild delay with mild difficulty propelling the bolus posteriorly in the oral cavity."

Feb. report: "There is significantly delayed swallowing response"

June report: "Mildly delayed initiation of swallow is evident."

I ask you, isn't that progress?

The rest of the day at Rehab was spent "discharge planning", i.e., both the OT and ST giving me instructions on how to do therapy at home. This therapy consists basically of exercises as there is no way I can do the e-stim at home as I don't have the machines. Very disheartening, the whole thing.

After rehab, Bob had an appointment with his neurologist. The good news here is that after an exam and a few tests, the neurologist is certain that Bob's CIDP is gone, or as he said "inactive". Doctors will never admit that something like CIDP is "gone", just in "remission". Well, whatever. This certainly is good news!! We then talked about Rehab and, of course, I told him all the trouble with being discharged and gave him copies of the two swallow tests and though he was disappointed with the new results, he said the new test was certainly "better" and (get this) the doctor is going to send a new script to the Rehab Center requesting them to continue Bob's therapy!  Both OT and ST. Yes!

Now, we'll see what happens. Will Rehab follow the doctor's orders? Will the therapists be pissed that I have gone over their heads?

We go back to Rehab today. 

Stay tuned....


oc1dean said...

Diane, hang in there, I'm sure that the insurance/HMO behind the therapists are causing the stop in therapy. They want to see functional progress in a limited amount of time. They have no realization - and don't care - that brain injuries require a long time to recover. I used to lie about what I wanted to accomplish on things I already could do to keep therapy going. For your eStim needs I got a unit 77715 from for around $70 from Allegro Medical, now $85.

Jenn said...

Yup. I echo Dean's post.

Nikki said...

Yes, going from severe to mild is progress- very good progress!