Ben's story from his mom below:
Starting around Halloween we noticed Benjamin falling, more fatigued, cranky and just not acting himself. He would sleep as soon as he came home from school and was complaining of aches and pains mainly located in his legs. Originally we thought the clumsiness and leg pain was a side effect of the Tibial torsion (an inward twisting of the shinbones located between the knee and the ankle) that he had as a toddler and we were told would correct itself over time. We decided to keep an eye on him and for a little while he seemed to be doing okay. Then around mid November he began falling a lot, including at school and seemed to really struggle with his balance especially on stairs. His teacher even reached out with concerns so we decided it was best to have him checked out. His appointment with PCP was the day before Thanksgiving. He struggled to walk in the hall for the doctor, had a hip x ray to be sure we hadn't missed an injury and to check for septic hip. The x ray came back normal. Labs were drawn and she also preformed a neurological exam. During this exam she noticed a difference between his pupils and decided it warranted a STAT CT. We were sent to UVA straight from her office. I was so flustered and trying to make sure we arrived on time I actually received my first speeding ticket, oops.
We had the CT and were sent home to await results. Later that day as I was leaving for work the PCP called and said the labs were normal but they had found something called Chari Malformation on the CT and that they were setting up referrals with neurologist for after the holidays. We were in shock to say the least. Over Thanksgiving holiday I noticed a rapid decline in his walking as well as him complaining of more pain, and new pain in his arms. I came home from work picked him up and dropped him off at school Monday. Before leaving the parking lot I burst into tears. I felt like he wasn't safe even though his teacher and administration were aware of his circumstances and had implemented a hallway buddy and elevator access. This info was relayed to his PCP and it was decided that instead of waiting for follow up referrals that we needed to take him to the ER, so we did just that. It was a very long day/ night in the ER, I had to miss my scheduled shift that night because I had zero sleep. After tons of labs, a urine specimen and a full spinal MRI with contrast we were released at 2am with no real answers. The following morning a neurologist called and said that the Chari Malformation they found on the CT was not causing his symptoms but they did find that all his spinal cord nerves were severely inflamed which led them to believe he had some sort of autoimmune response happening. We made a plan to come in, have a nerve conduction study and stay overnight ONE night to receive an IVIG treatment.
I worked until 3am the night before our planned admission, came home and rested some and arrived back at the hospital at 11am. Much to our surprise and the doctors Ben's nerve conduction study came back NORMAL. This made the doctors rethink the diagnosis and prompted them to double check for any infection. He had a brain MRI that night and we planned to have a spinal tap done the next day. The brain MRI showed inflammation in his cranial nerves and optical nerves. The spinal tap required him to be sedated and was a scary experience for everyone. He was a trooper and did wonderfully. The results yielded no signs of infection but his protein levels were very elevated which once again suggested something autoimmune. They decided to go ahead and start round one of a broad spectrum IVIG treatment to hopefully prevent anymore nerve damage. You can only get one infusion per 24 hours and he needed three total. (these treatments start at $3000 a dose) You have to be monitored closely for your first round of these treatments because some side effects include difficulty breathing; swelling of your face, lips, tongue, or throat, drowsiness, confusion, mood swings, nausea and vomiting, wheezing, chest tightness, sudden numbness or weakness, sudden severe headache, confusion, problems with vision or speech, warmth or swelling in one or both legs, fever with headache, neck stiffness, chills, increased sensitivity to light, purple spots on the skin, and/or seizure (convulsions); or pale or yellowed skin so that's why we ended up with a 4 day, 3 night stay in the hospital. Luckily he had no reactions other than some mood swings!!
After the treatments we were sent home and have had one neurologist follow up so far. They said that he wasn't any worse, but also wasn't any better. He still had zero reflexes in upper and lower body. Still requires hands on assistance when walking. They decided to give the treatments a little more time and are hoping that more lab work will be back to help us better pinpoint which antibody is misbehaving. For now they are saying he has a variant of Guillain-Barre syndrome which is an autoimmune disorder that for an unknown reason your immune systems starts to see your nerves as "foreign" and attacks them. They aren't sure until more blood work comes back and time passes if this is chronic where he may continue to have flare ups and treatments or if it is an acute case.
He has returned to school and has a detailed safety plan in place. A part of that plan includes that an adult has to be with Benjamin whenever he is moving place to place to avoid falls and injury. He also can not use the steps or ride the bus. Because of this we are driving him to and from school and escorting him to class at drop off and from class at the end of day. I am continuing to both try to be there for him as well as work full time, which often time includes appointments during the day then working that night. I have very little PTO saved since I was just on maternity leave. Between all the follow ups, physical therapy, copays, added fuel costs driving him to and from school and the medical bills we are struggling. Anything would be greatly appreciated.
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