*3-13-2002 Guillaume Barre Syndrome,

March 13, 2002

OK, we have a diagnosis, he is suffering from, and now being treated for

Guillaume Barre Syndrome,

a demilinating neuropathy, which can, as I’d projected before we knew

what it was, cause increasing

weakness until the patient hasn’t the strength to breathe. On the other

hand, they have now started

treatment- which consists of 5 days of IV Gamma globlulin, which should

arrest the disease. They

won’t say that it will arrest the progress of the symptoms- but they

will be watching him closely, and

if he starts getting that weak he will be whisked off to ICU to be

maintained on a respirator until the

strength returns- and meanwhile, we can hope it won’t get that far. One

COULD wish that they’d done

the EMG (which confirmed the diagnosis and they’ve been hoping for since

Saturday) sooner. Sorry,

I had to say it. It’s at least a trifle comforting that his doctors were

just as cross at the delay in schedualing

the test.

Anyway, after dealing with cancer for a year, just hearing the doctor

say that they know what it is,

it’s treatable, and an acute, not chronic condition is a relief.

Recovery may take a month- so I guess

we can figure on a long stay here on 6C again. (with, or without, and

intermediate stay in the ICU,

I prefer without, please.)

He will now have PT & neurologists and pulmonary experts coming in a

lot, but the infectious disease

doctors will lose interest.* He had a bad night last night, because he’s

been in bed so long that his back

has started to hurt- and his shoulder (dislocated in the 70s) has, in

the absense of muscle tone, been

popping in and out. So they gave him morphine, but he didn’t really

sleep well. He’s dozed a lot today-

even when they were doing the EMG- which consists of running electric

current through different

muscle/nerve groups. That COULD have been the benadryl. Since IGG is a

blood product they pre-

medicate him with 50 mgs. of Benadryl, and 25 mgs. is enough to put him

to sleep if he’s tired.


I’m scedualed for home tomorrow, and the home computer I use for e-mail

is on the blink, so if you

don’t hear from me tomorrow, that’s why. Prayers are welcome, questions

too, and any information

anyone might have on GBS- I guess I’ll go look it up. (Oh, they say that

no one knows what causes

it for sure, could be viral, but it also is a known side effect of the

Ara-C he had as chemotherapy last

year, and maybe a virus- say whatever gave him the temp last week-

uncovered it.) Guess I’ll have

more time to clean house.


And his blood numbers remain good- especially for a guy who’s not eating


White Blood count:3.53  Hematocrit: 29  Platelets: 26


*PS, I’m told not- the infectious disease folk will stay interested as

long as he occationally has

positive Cytomegalovirus readings- which he did this week.





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