Hudsyn's Journey with AFM

In September of this year our Huddy came down with a typical cold, cough and runny nose, no big deal then he came home from school on a Wednesday and complained of his neck hurting, I thought maybe he was getting a headache but just to make sure it was nothing serious I had him bend over and touch his toes and turn his head side to side, he did. By that Friday he was complaining of his arm being broken, I thought he was joking as he wasn't acting funny or complaining of pain and is kind of a practical joker. Saturday morning  came and he was screaming in pain, he couldn't sit up, he could not move his head and was having a hard time walking. Immediately we took him to walk in clinic where they sent him straight to the ER for an C T of his head and an crazy of his left arm which by this time was completely limp hanging by his side. The ER could not find anything his tests to give answers besides the fact that he had bronchitis and sinusitis, they treated him with antibiotics and sent us home telling us if he got worse to take him to an ER that was better equipped to handle this as he would need a lumbar puncture done. A few hours later  Hudsyn wasn't any better so we called the doctor that saw him that morning and she advised us to take him to the hospital right away however the two local hospitals said they would just send him to a different hospital so we drove an hour to one of the hospitals they would have sent him to. Huddy had a lumbar puncture done and another slew of tests and was admitted. I'm the morning he under  went an MRI of his brain and we met with a pediatric neurologist, he suspected Guillian Barre Syndrome as Hudsyn had lost all reflexes of his left leg and use of his left arm accompanied by lower extremity weakness. The MRI came back clean and the next day he had some reflexes back in his left leg so this ruled out GBS, but now he was falling, legs just giving out on him, his gait was off so he would run into walls and he had neck pain and couldn't turn his head. Eventually he started therapy and and we were told he was improving after a few days i.e. not getting worse, sent home being told we might never have answers but to continue OT/ PT outpatient  and wait for the West Nile & Lyme disease tests to come back. Huddy started therapy the next week, after therapy we made a stop at the gas station  and in the matter of seconds he fell head first into the ground, see his legs would still give out on him and he could catch himself because of his left arm being paralyzed. It was awful to see, that wasn't the last horrible fall my baby would take either. I called the pediatric neurologist and told her what happened and was immediately given an appointment for him. Hudsyn went through another MRI, nothing, and was referred to a children's a hospital in Chicago, we go January 7th and hope they can give us answers. We also have an appointment with a well known rehab hospital in Chicago so they can give us a custom rehab plan for Hudsyn. To wrap up though because I could go on and on  we still have 0  answers as to why our healthy, active 5 year old boy became paralyzed and weakened. Hudsyn still can't use his upper left arm and has weakness in both  of his legs. He continues to go to therapy once a week and tries to do things he did before some he can do with improvising and some he can't. Never once had this sweet little boy asked "why me?" He trusts that we will help to get better along with the doctors, and therapists however we just  don't know how much better it will get for him. As a parent you always give your child what they need without question and that is what we are trying to do for Hudsyn, however finances are super tight as I am at home with him to run him to all of his appointments, take calls from the doctors and because he is only in school half days as the doctor ordered. Hudsyn goes to PT/OT once a week for now, was going to the chiropractor twice a week and was taking liposomal vitamin c but we can't afford the last two anymore. We really dislike discontinuing any of his treatment as he has been making progress and we don't know if it's because of all of what we have been doing or not. Our insurance doesn't cover the chiropractor as we haven't met our deductible yet, my husband changed jobs after 13 years right before Hudsyn got sick so we were without insurance for 30 days, and each visit is between $40-$65 a visit and the vitamin c that he was taking is to help with nerve damage however it is over the counter and around $90 for a month's worth. I said from day one we would find a way to get him everything he needed s o he had every chance to get back to his baseline self but now we are at a crossroads because we have to choose between investing in  his treatment across the board  or our mortgage and living expenses. We just can't afford the $600 plus out of pocket on top of his therapy costs every month any more and that is why with my head down I am sharing his story and asking for help. Please help us help Hudsyn to be himself again, being able to run without the fear of falling, climbing like a monkey on our trellis out front, lol, and being able to go out in public without being self conscious. No matter what we find out we know one thing for sure, our Hudsyn is one in a million!


https://www.kwqc.com/content/news/Polio-like-illness-reaches-young-boy-in-Rock-Falls-Illinois-497121571.html