Q's battle with AFM
Say hi to our 7 year old Quinton. He was diagnosed with AFM, Acute Flaccid Myelitis, last Friday 9/28/18. AFM is a rare Polio-like Neuro-Immune Disorder that affects predominately children. The statistics show that only 1 in a million people are affected. Thousands of people can have the same cold or enterovirus and maybe only one child contracts AFM from it. Quinton like most AFM kids got sick with an upper respiratory infection which turned to pain and sudden paralysis. We feared meningitis initially and the family doctor ran blood and strep tests and sent us home with negative results and a low dose steroid prescription. After three sleepless nights we went to the Children's Hospital in St Paul MN where we spent the next 14 days and I our life took a dramatic change. After a CT scan, spinal tap, x-rays, multiple MRI's and a bunch of blood work, they diagnosed Q with Brachial Neuritis. During his acute stage he lost his ability to move his left arm and had leg and left facial weakness as well. Thankfully he has some distal strength in his fingers and a little in his wrist. He also had a very stiff and floppy neck. The doctors had us on a 5 day steroid treatment and we thought we were going home last Thursday. Q had his IV out and was so looking forward to going home to his family and dog. Then the doctors came back with the concern that they wanted to do a 3rd MRI and we heard the term AFM for the first time as a possible change in diagnosis. Q was brokenhearted when we told him he needed an new IV and more testing and we weren't going home quite yet. The doctors said they noticed something new in the 1st MRI that they wanted to look into, but we later found out that several other kids have come in with similar symptoms in the Twin Cities area in recent days. They did the 3rd MRI of his full spine Friday morning and we received a visit from a Infectious Disease doctor who told us he has AFM. They told us they needed several samples for CDC testing and research and placed Q on a quarantine to his room for two days. The doctors suggested a five day treatment of IVIG to help boost and reset Q's immune system. We had several sleepless nights and did as much research as possible which was difficult because of how new and rare AFM is in the medical community. Eventually we found a facebook group of parents of AFM kids which has been a blessing to talk with other families affected by this horrible disease. It has been difficult to watch our son go through this and not be able to fix it or take it away. We're relieved he's not in pain anymore but brokenhearted about his arm. His neck strength has improved and he has adapted well to not having use of his left arm. He can hold his head up now and once they gave him gabapentin he could start to sleep again without pain. In the world of AFM, Q is in the outside spectrum of those affected and we are very blessed that the paralysis only affected one arm. There are so many other kids out there that have had a much harder time and our hearts break reading their stories. Q received Physical and Occupational therapy daily in the hospital and we are stretching and moving his arm multiple times daily trying to prevent it tightening up and the muscles from dying. Now that we are home from the hospital the next steps for Q are continued PT and OT to try to encourage the body to heal the damaged spinal column and nerves. Part of the problem with AFM is that it is so new and rare that average Doctors, Physical Therapists, Neurologists and Primary Care Physicians do not know what it is or how to treat, diagnose or rehab the children affected by AFM. Only a small percentage of kids with AFM recover and most have life-long affects. We are looking to give Q every chance possible to overcome and adapt. We are looking to get an estim machine at home to use Neuromuscular stimulation in hopes of preventing atrophy in his arm. We are also looking to get Q into a two week program at the Kennedy Krieger institute in Baltimore Maryland. KKI is known as being the leader in helping AFM kids and others with spinal chord injuries create a personalized rehab program with state-of-the-art tools and facilities. After giving Q's body 6 months to heal what nerves it can, we plan to look into nerve transfer surgery to "rewire" any muscles possible and fight against the paralysis. For those of you that know Q, he is back to being Q and he will continue to adapt and be resilient. Q does a great job of making sure "righty" doesn't forget "lefty" and carries his arm around, and positions it to use his fingers when possible. It's humbling to watch him as he takes on this new challenge in his life and he teaches us something new everyday. Without being asked or told, in his nightly prayers he asks his Father in Heaven to bless all the other kids afflicted with AFM before even asking for help for his arm. We are so proud of Q and he has truly been our hero through this. We are especially grateful and humbled by the overwhelming support and caring that has been shown to our family through this tough time. As a family we appreciate the prayers and thoughts in our behalf and we have set up this page for those that have offered to help with Q's continued fight and medical bills. Thank you and God Bless.+ Read More
We are home from Baltimore and Q has started outpatient therapy at gillette's. Baltimore was good for Q and he worked hard. Q worked on strengthening his weak leg, core, neck and arm, and learned to do basic life functions like dress himself with the use of one arm. Our plan is for him to gain as much strength as possible over the next couple months. We have an initial consultation with Dr Seruya in Los Angels in January to look into options for nerve transfer surgery. Q will continue to battle and we appreciate everyone's continuing love and support for our family. These funds have been and will continue to be a big blessing in helping with the mounting costs of his care. Thank you and God bless
As a quick update on Quinton. We fly out to Kennedy Krieger in Baltimore this weekend for treatment. KKI has seen and helped more kids with AFM than anywhere in the country and we are encouraged that we are able to have him treated there. We are so thankful for the outpouring of love and support that has been shown to our family during this time. Quinton is good spirits and doesn't complain about the inability to use his arm. Our treatment plan is to take the therapy plan provided at KKI and institute that back home with Gillette's Children's. We have an appointment with a surgeon in LA in January to look into possible nerve transfer surgery plans for areas that are still lacking progress by that time. That surgery if needed will be done in February or March. We appreciate the donations received which have and will help us with travel and medical expenses for Quinton. We have faith that Quinton will continue to improve and are grateful for the prayers and positive thoughts on his behalf. God bless.