Hi everyone! I am Ann-Marie, Matthew’s mom. I just thought I would give an update as to what is going on in our world. We have an appointment to go to the Mayo Clinic in Rochester, Minnesota, on November 18 to see the diagnostic department. They will review all of Matt’s 400 pages of medical records, and direct us as to what specialists and tests that need to be done from there. We expect to be out there for approximately seven business days, although they advised us that it could take longer depending on how extensive the case is. For those of you who really don’t have much background of Matthew’s story I thought I would try to explain it in the short version. A little over 18 months ago, Matthew fell off a skateboard breaking his elbow & wrist. While they were doing the original x-rays, they thought they saw a simple bone cyst in his humerus. After taking him to an orthopedist, we were told “that it was not a simple bone cyst; he thought it was Fibrous Dysplasia, a rare bone disease in which Matt develops tumors & cysts inside the bone.” We were immediately sent to our first orthopedic oncologist. He thought it was fibrous dysplasia as well, but said we could not do anything until the factures healed. In the next few months I did as much research about the disease as I could, unfortunately there is not a lot of information about it. In July 2013, Matt had his first surgery on his arm. They removed a large cyst, performed a biopsy of a tumor in hopes of confirming fibrous dysplasia, and an allograft (a bone graft using cadaver bone). Unfortunately, the biopsy was inconclusive. December of 2013, Matt started developing an unexplained weight loss. In March on 2014, Matthew developed hypokalemia (low potassium). He was hospitalized twice in March for this. After he was released from a weeklong stay the second time, we were told that he needed to go to Columbia Presbyterian Hospital because “that’s where you send the patients that you don’t know what’s wrong with them. They’ll be able to figure it out.” After seeing another orthopedic oncologist /pediatric tumor specialist, we were told he needs surgery on his arm again. They performed a second surgery in April of this year again doing another biopsy, removing cysts & tumors; they put in a large plate and eight pins to stabilize the bone, and another allograft. The fibrous dysplasia was confirmed after this surgery, but we were told the continuous weight loss and hypokalemia was not linked to the fibrous dysplasia. Therefore, to date Matthew continues to have his weight monitored and blood work every three weeks. We have seen somewhere between 25-30 doctors who have run numerous test and still have not been able to come with a diagnosis as to what is causing this mystery. He has now lost 97 pounds and it has become critical that we find out what is wrong with him. The last 18 months have become an unimaginable nightmare for my family and myself. It is incredibly frustrating to go to some of the best hospitals and doctors in the country and have no answers. It is our hope that the Mayo Clinic will give us those answers to help Matthew. Words cannot express the gratitude that we have for all of you, having been kind enough to help Matthew while sharing this on your social media pages to get the word out. Your thoughts and prayers are greatly appreciated! Thank you for giving us hope!! Love, Ann-Marie
Posted on: Tue, 21 Oct 2014 18:58:10 +0000
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