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I've been told journaling would be very helpful in coping with Matthew's diagnosis, documenting his progression, and keeping everyone who cares about him updated. So here goes....
It's been a challenging Summer, to say the least. Matthew began suffering from tightness in his hands back in the Winter of 2018. As time progressed, he mentioned muscle soreness in his back and his arms. He began struggling to lift his arms over his head. At the time, we felt he might be suffering from a pretty intense growth spurt and growing pains. His symptoms concerned me but he appeared to be taking things in stride and nothing was stopping him from his normal daily routine...including his dance and musical performances. In June, we had him checked out at his pediatrician who advised blood work and an ultrasound of his abdomen. Those tests came back clear with the exception of some elevated liver enzymes and a slightly enlarged spleen. I decided to bring him to a chiropractor who actually helped him a lot. At the end of a week, Matthew was regaining strength in his arms and no longer complained of back pain. All was well for a few weeks. In July, Matthew began complaining of tightness in his legs and actually fell, with no warning, on 4 separate occasions. This was when I knew something wasn't right. We returned to the pediatrician who ordered more specific bloodwork. On July 26th, we received word that his Creatine Kinase level was 9900 (normal is 24-240). Matt was sent to Valley Hospital for further testing and IV therapy to flush his system of the CK (Creatine Kinase is a muscle enzyme that leaks into the blood and urine when muscles are breaking down due to illness or injury). The hospital rechecked his CK level and it came back at 10,300. We were then admitted. Throughout his 6 day stay, he endured an incredible amount of testing to find the cause of his muscle weakness and abnormal bloodwork. Several MRI's, an echocardiogram, EKG, a massive amount of bloodwork (which was sent to Mayo Clinic), a Muscle Biopsy (sent to Columbia Presbyterian), etc....We were released on July 31st with a tentative diagnosis of Polymyositis....a rare autoimmune disease that attacks the muscles. Matthew was put on a high dose steroid and we now had a team of specialists who would be caring for Matthew in an effort to put him into remission, as there is no cure for this disease.
In August, we decided to get a second opinion at Hackensack University Medical Center on the advice of friends. We were able to get an appointment immediately with Dr Ginger Janow at the Pediatric Rheumatology Department at HUMC. After an incredibly thorough workup and the help of blood work results and biopsy results, Dr. Janow felt that Matthew was likely dealing with Juvenile Dermatomyositis with Jo1 positive antibodies. She contacted Dr. Lisa Rider at the National Institute of Health in Bethesda MD who concurred with her diagnosis and is co-managing his case. Juvenile dermatomyositis is an inflammatory disease of the muscle (myositis), skin, and blood vessels that affect about three in one million children each year. The cause is unknown. The primary symptoms of JDM include muscle weakness and skin rash. There is no cure.
For more info (copy and paste into your browser):
http://www.childrenshospital.org/conditions-and-treatments/conditions/j/juvenile-dermatomyositis/symptoms-and-causesMatthew was put on a regimen of high dose Prednisone, Plaquenil, Methotrexate injections, Synthroid (for slightly elevated thyroid), Vitamin D3, Leucovorin, and Calcitrate. Matt will likely have IVIg infusions once a month. All of this in an effort to put his body into remission, regain muscle strength, and get him back to normal activity and the dancing and performing that he loves. Dermatomyositis with positive Jo1 often comes with Interstitial Lung Disease and an increased incidence of cancer at the time of diagnosis and shortly thereafter. Today, we were so blessed to find out via Pulmonary Function Testing and CT scans of his chest, abdomen, and pelvis that he has NO evidence of malignancy or Interstitial Lung Disease. His first dose of Methotrexate was given to him tonight by his dad and our next appointments are for a baseline eye exam and an exam at the Hematology Department of HUMC as well as an endocrinology follow up. His first IVig appointment is set for September.
Throughout the entire process, I have been stunned and awed at Matt's ability to smile and stay positive. The medical staff adore him...he's so cooperative and respectful. He has smiled through every single needle poke and invasive test. He has adjusted to his drug regimen and is dealing with side effects with humor and a positive outlook. I have no doubt that he will be jumping, running, dancing, and performing in no time. He has managed to continue life as a teenager throughout this process...spending time with friends and family and getting his drivers license. It hasn't been his best Summer but he has certainly made the best of it. We are determined to do what it takes to get him into a long-lasting remission.
As for me, it has been surreal. Being the parent of a child with a serious, rare autoimmune disease has been eye-opening. Not only has Matthew become my hero but I am now awakened to the reality of rare childhood disease. I have joined www.curejm.com which is an amazing organization that helps kids and parents deal with the effects of juvenile myositis. I am becoming enlightened about the lack of funding and resources for these rare diseases and the vital need to increase those. As we move forward into the future, helping this cause will become a priority for me. Matthew is taking part in several studies at the NIH this Fall to help future outcomes for children with JDM by having his case studied.
Finally...our family is so blessed by our home community, our medical team, and the new community of friends we have in other JM parents. The texts, e-mails, prayers, dinners, cards, even surprise gifts, and outings, etc have been overwhelming. The offers of help and carpooling for our other kids has been SO appreciated and we will most likely be taking some of you up on those offers. In the last 4 weeks, I have learned that it does in fact, take a village. Putting pride aside to accept help so that all 3 of our children can have their needs met has not been an easy thing for me but a necessary one at this point in time. Thank you to each and every one of you for everything. I'll never be able to put into words how much we appreciate you.
