Already more than a year ago now on June 20th, 2012, Lucian awoke tugging on his ear. I took him to his pediatrician and he was diagnosed with an ear infection. This is a relatively common issue with children, under a year old, whose older siblings attend public school. We took the usual medications, precautions, and waited. We had no idea what was beginning.
Two days later when I came home from work, my husband and I noticed he was crawling strange. I noticed a slight dragging at first but he didn't seem to be in pain. I planned to take him to see his doctor again the next day but within a few hours, his pain became severe. It had become so painful he began completely dragging his lower legs. My training kicked in and I did my nursing assessment. I found his deep tendon reflexes to be non-responsive, and no sensation to his left foot.
I took him immediately to the Emergency Room after contacting his pediatrician. The doctors there said Lucian's hip was inflamed and that that was the reason for the leg weakness. We went home with ibuprofen in our hands; confused and tired, with little answers. The following day he was not showing any signs of improvement and would not bear weight on his leg at all. I called his pediatrician again and was simply told to keep an eye on him. You cannot imagine the agony in waiting, watching your child become paralyzed by some unknown problem. This wasn't slow, it was kept spreading; kept getting worse.
By the end of the next day, I realized he only needed a single diaper change in 24 hours, something 11-month-olds are not prone to do. We contacted the pediatrician one more time and where instructed to get to the E.R. again for fluids and X-rays. The X-rays and ultrasound gave no insight into the problem, but the fluids seemed to perk him up a tad at least. It was nice to see Lucian smile again. We were discharged again and had another horrid night.
I woke to him screaming in pain and to find my child not being able to move his body; only his head could move ever so slightly. No more phone calls, we went directly to our pediatrician. We needed answers. Upon arrival he called our local major Medical Center and we went straight there. We were admitted to Pediatrics but quickly moved to Intensive Care as they began to realize the severity of the problem. They suspected Guillian-BarrÃ©, Muscular Dystrophy Syndrome, and a handful of other possible diseases.
At this point he lost feeling and control of both his legs. He was no longer able to sit up. We had them run every test possible: MRI's, lumbar punctures, blood screening, anything that could yield a clue. Little Lu then lost bowel and bladder function thus had to have a Foley Catheter. We even agreed to Intravenous Immunoglobulin (IVIG) therapy and a round of steroids to try to stop the swift progression. Nothing was accomplished.
After three weeks of seemingly repetitious days, we were transferred to the children's Neurological Dept. of the hospital. There they did another lumbar puncture and this time found West Nile in the sample. But after three weeks, it was no longer enough to be considered "officially" positive. He also was found to have a positive sample of Mycoplasma. Both of these can cause acute flaccid paralysis. These answers came too late to be useful.
We have been in and out of patient therapy for over a year now and two separate nerve conduction studies showed that there is a break in his long motor neuron signal. These nerve conduction studies are consistent with Polio Like syndrome as well as non-wild Polio virus. To be clear; it is not polio.He is up to date on all vaccinations!. This isn't mild and won't be going away within a month. This unknown virus causes long term to permanent damage to the human nervous system.
You might ask why I would write all this out. During this whole ordeal, I witnessed first hand the lack of knowledge in the medical community regarding signs and symptoms of flaccid paralysis. This is not to say the amazing medical teams at each facility were anything less than some of the kindest, most concerned people I've met. I just worry for the next family or the next child who has to suffer as my Lucian did, has, and still does.
As for the character of my son, he is stronger than I could have ever imagined. He regained upper body control and after a year of therapy he has begun to regain some control of one of his right leg and his trunk is improving. His left leg though, shows little progress.
If my son's story helps one family in getting their child the help from being informed, you will lift some weight from my shoulders. Please don't let this be for nothing. Please be aware of the symptoms. And remember his face, his impossibly large smile. This is the face of A Polio like syndrome.
We haven't given up hope, and he certainly hasn't given up trying. People have been kind enough to help us when and were they can, including his first walker to assist him in being vertically mobile.
I need your help. My son will walk again, I have to believe that. But in the mean time, the physical therapy, medical bills, and other fees are becoming more then our family can take.
Any amount you are able to spare for my son Lucian will go towards, and only towards his medical care.
This is our Lu Lu.
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