To Hell and Back: My Daughters’ Paralysis

I have been living in a household of sickness for four days now and I am hopeful this is the end of it! My first daughter had it, then my second girl way worse than her sister, and then myself, as well as my teenage son. I am reminded of the darkest time in my life, when my little girls became paralyzed after receiving immunizations.

The year was 2005 and I was still married. We were a few months late on giving my daughter’s their eighteen month immunization needles and did so near the end of September, about five weeks before their second birthdays. I remember being at my mom’s and Lexis kept walking then falling down. My mother wondered if it could be an ear infection throwing off her balance. Within the next day or so, both Lexis and her twin sister Lindsey lost the ability to walk.

The next three weeks would be a series of great suffering and great confusion for us all. In that time, we had taken the girls to six different doctors and none of them could explain what was transpiring in my little girls bodies. Within that first week, they became extremely irritable with any contact. I would pick them up out of a high chair, or lift their bottom to change a pamper and they would wail in pain. There was no comforting them. They started losing the use of their arms. The crying intensified. They became constipated, so horribly to the point that a doctor had to lay each girl on their side and using his fingers, he manually removed their feces. It was so sad to watch and hold their hands and wipe their tears. When I bathed them, I had to hold their body while I washed them, otherwise they would fall over. It was a nightmare that we couldn’t get out of. We needed direction and answers!

Nearing the end of that third week, I took my girls to a doctor I had been an acquaintance of through our church in Red Deer. Immediately, upon viewing them, he was alarmed at how deteriated they were and he set us up with a pediatrician at the Red Deer hospital. Within an hour of being there, including the girls enduring a spinal tap, the pediatrician was able to deduce that what we have been facing was Guillain-Barre syndrome, or GBS. It is a neurological disorder that can cause paralysis in the lower and upper limbs, in the facial muscles and ultimately in the lungs. It also strips the myelin sheath protecting their nerves. In other words, every time we picked them up or tried to comfort them, they were a hot and cold mess of exposed nerves throughout their entire bodies. Numbness and tingling can also occur. GBS affects one in one hundred thousand people, and in our case, due to twin sisters simultaneously experiencing this, the number is more like one in a billion. Apparently, we are in medical journals, somewhere.

A definite sigh of relief was felt at that point, in finally being able to give a face to this monster that had disrupted our lives and caused such great pain in my sweet little girls. But the road ahead was very long.

They remained in the hospital for ten days. The only treatment for GBS is either a plasma exchange involving removing blood, filtering it and putting it back in the body, or intravenous immune globulin (IVIG) which is adding helpful antibodies to their blood. They received the IVIG treatment over a two day period. My wife and I alternated nights of sleeping in their hospital room and of course, day visits. At night, both girls needed oxygen assistance. One day, they transferred both girls along with myself to the Calgary children’s hospital to check their nerve responses. My mother met me there, luckily, because more excrutiating torture was to come. I was in the room with each girl respectively and my mother consoled the other in the waiting room. The tests they conducted were out of the dark ages! They shoved these foot long needle spikes into their legs at two different spots, into the bone, and dug around in there for minutes, all the while my daughter’s are screaming. I really didn’t like that day.

On their second birthday, October 24th, they were cleared to go home. My mother and grandmother came for cake and presents, and then we got out of there and brought those poor darlings home finally. The next two months were not much better. They were still paralyzed, though mostly only their lower limbs and as well, their nerves were still exposed. The good news was that they were in fact healing, but it took time.

One memorable day in mid December, Lexis began scooting around on her bum, by moving her legs. It felt like a miracle! All was going to be well. That was the turning point. Less to zero pain eventually. I had them going to physiotherapy to re learn to walk from January through July. And at that point, they were home free!

To this day, almost nine years later, I don’t see any residual long term effects. Apparently, the younger you are in experiencing GBS, the greater your chances are of complete recovery. Both my girls, as well as my son have stopped receiving immunizations. The odds of another scare are very slim but why in the world would I ever want to chance it from happening again.

It was something that is impossible to forget. I love those girls with every ounce of me and I will always be so proud of their strength.

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