[FONT=”Comic Sans MS”][SIZE=”2″][I]Cheryl,
Glad you are bullheaded, it sure helps get the grease on the squeaky wheel, doesn’t it?:)
Regarding the PP, it sure did the trick for me.
With my initial dx of GBS, a five day course of IvIg worked well and got me back on my feet, however when I relapsed 10 days later, the same course only brought me back to about 50% and over the course of 2 months I slowly deteriorated to the point of barely being able to manage a walker.
Then my Doc put me on PP course,
The catheter/port was implanted and I had my first treatment as an in patient, on the day of my second PP, I had to use both hands to turn the ignition switch in my car and it was a tremendous struggle to handle loading and unloading the walker.
By the end of the 4th PP, I was walking with a cane and everything became easier. Had 7 PP’s spaced over 2 week period, and by the end I was walking unaided, though I still carry the cane just in case the balance goes off.
My point is, for myself at least, PP was a miracle.
Catheter still in place and I don’t mind accomodating it since i credit it with giving my back my hands and legs.
Now lower that bull head of yours 😀 and charge after your Doc, get him/her to listen. ‘Kay?
I don’t know about IVIG since they didn’t do that with nate, but I will tell you what the technician told me about PE and how it works.
He said that PE removes the Plasma from your blood. The plasma is the water in your blood and it contains the Auto Antibodies that are literally eating the Myelin or nerve coating, causing paralysis. That’s called Demylination or removal of Myelin.
When they remove the Plasma enough times, they feel safe that enough of the Auto Antibodies are removed to stop the progression of the Demylination.
They put IV lines in your arm and neck, one to take the blood out and into the machine, then another to put the blood that has been mixed with Saline and Albumin back into your body. Your body then makes new Plasma.
The machine that they use spins the blood 220 rpm’s to separate the Plasma from the red and white cells. It looked like a big bag of beer hanging over the machine when the 2 hrs was up.
They do it in 2 hr sessions, either 10 or 12 hrs, depending on how acute the case is.
They did nate for 12 hrs. He was also sedated so as not to move his head any.
They destroy the Plasma that they remove since it is of no use to anyone.
I had about 20 sessions of plasma exhange last year. I am 44 with excellent veins, so they were able to access my veins with a needle stick in each arm. The catheters used for pheresis are quite large, however, and may be problematic for a 3 year old’s veins. If the patient cannot be accessed via peripheral veins, the doctor will need to place venous catheters that pig-tail externally, which I understand are often in the neck area. The process itself caused my blood pressure to drop to about 90/40 until about 15 minutes afterward, rising to normal after I sat up, etc. The process also really wiped me out from an energy standpoint for the rest of the day.
It was somewhat beneficial as it helped me to slow down a major exacerbation. I think it might be a little rigorous for a 3 year old, just my opinion, based upon personal experience.
Best of luck to you.