All about Guillain-Barré syndrome: Simon's story of chronic GBS with ITP and adult ADD

I found your site about Guillain-Barre very interesting and, after reading several case histories, decided to submit my own.

Patient: Simon Ludgate
Born: October 8, 1981
Location: Montreal, Quebec (Canada)
Treated at: Montreal Children's Hospital
Trigger: Meningitis vaccination in October of 1993
(just turned 12)
Diagnosed: December '93
Treated: February '94 to Summer '97

In October of 1993, my entire grade six class had their meningitis vaccinations. It wasn't until months later that it was traced as the trigger that started me on the rollercoaster of Chronic Guillain-Barre Syndrome.

The first signs showed up around Christmas time: I noticed my hands became harder to use. My already bad handwriting was deteriorating, but as a 12-year-old boy I had no idea why and was too afraid to tell anyone about it. I had a hard time using my hands for thing that required strength in fingertips, such as pulling on socks and doing up zippers. Things continued to get worse until my aunt, visiting in late December, had me squeeze her hand and noticed I was far weaker than I had any right to be.

I was rushed by my parents to the Montreal Children's Hospital ER, where I was first examined by a med. student, then by the head of Neurology. A few hours later the diagnosis of Guillain-Barre came through and I was admitted to the ICU. Tests were mostly external, however: I don't even remember if they took blood. I was released after five days on the belief that I was improving. Actually, I was just getting better at improving my results on the tests they administered.

After another month of slowly getting worse I returned to the hospital, this time to a normal ward, where I was observed, poked, prodded, and tested for a week. Tests included blood tests, Lumbar puncture, ECG, EMG (awful thing to do to a kid), and various physical tests. Reflexes were gone by this point. This was also the worst period of GBS I succumbed to, so here's what it was like after four months of slow-onset paralysis:

It was mostly a mobility issue; sensation, even in fingertips, was merely blurred and numb. However, I no longer had enough strength in my hands to pick up even a simple item like a spoon or turn a page in a book. Nor had I enough strength in my wrist to lift my hands: they hung limply from my arms. GBS affected only peripherals; I had no loss of strength or sensation in my abdomen, torso, neck, or head. I could walk, barely. I couldn't pick myself up if I fell down though.

After ten days of tests and observation, treatment was issued. I received a good dosage of IVIg (800ml, if memory serves). The next morning I woke up and the results of treatment were immediately apparent: my first act of rejoicing was having enough strength and mobility in my fingers to pick my nose! It was a minor bit of rejoicing, but felt like a miraculous recovery at the time.

Within a week all signs of GBS were gone, only weakness from atrophied muscles remained. Sensation was near fully restored, though reflexes never returned. Fine motor control was back, through I required months of physio- and ortho- therapy to fully regain control of my body.

The relapse was significantly faster. Within a week in May symptoms were rapidly returning and I was quickly getting weak. I returned to the hospital, was subjected to a second round of testing, and treated again with IVIg. Once again, I responded very quickly to the treatment, regaining strength and motor control within 12 hours.

The diagnosis changed from GBS to Chronic GBS, and I was put on a monthly schedule of outpatient treatments of IVIg. For the next two years I went to the MCH for a liter of IVIg, spending about five hours at the hospital during the infusion then returning home. My life was otherwise normal, though I avoided any intense physical activity as my reflexes had yet to return.

After two years the treatments were elongated: six weeks, then eight weeks, then the dosage cut in half. Finally, after over three years of infusions, the treatments were stopped. To this day, I've yet to relapse! I even got basic reflexes back by fall '99, which was my final visit with the head Neurologist who had followed my case and finally discharged me from the Children's Hospital (as I turned 18 that October).

I suppose by Chronic GBS I do mean CIDP, though I hadn't heard that term until I found your website. The doctors here in Canada always refered to it as GBS and Chronic GBS.

GBS isn't the only auto-immune disorder I've experienced. As a baby, just like every other in Canada, I was treated with a lengthy series of booster shots. These caused my body to develop ITP (Ideopathic Thrombocytopenia Purpura, the white blood cells destroying the platelets that cause blood to clot). Of course, at the time, it was believed I inherited the ITP from my father. The thought that it was caused from vaccinations just didn't seem to click back in the early eighties. It's only in hindsight that this appears to be the cause.

Either way, I'll never be vaccinated again to prevent another possible autoimmune reaction that could be far more serious. This is on the recommendation of numerous department heads at most of Montreal's top hospitals, so I won't be going against their advice unless it's a pretty critical immunization. It was one of the many subjects I discussed at length with as many doctors as I could in an attempt to form a well-rounded knowledge of the situation.

Now GBS is just a part of my history, there's nothing left in me to show that I once suffered an extremely slow onset paralysis.
I also have adult ADD, go figure, though it's unrelated to the
auto-immune disorders ;-)

Simon Ludgate
12.2002