But on to the main reason of this post...actually it is the reason I started this blog to begin with over 5 years ago. In 2008, Matthew had us all a little preoccupied but it wasn't with fun stuff like a new house. At that time, Matthew had a mass on his back that they thought was sarcoma. He had surgery up at Lucile Packard Children's Hospital and it was found to be a vascular malformation. He was followed by the neuro team there for a couple of years and eventually discharged from their care. The next couple of years were pretty uneventful. He was doing great and it seemed all of his health concerns were behind us. That is until last summer when Matthew began complaining of headaches. After several months and several doctors, a brain MRI was ordered. In December 2013, Matthew had a MRI that showed a cavernoma on the right side of his brain. After much debate, frustration, even switching doctors, we were given a referral back up to Lucile Packard. By mid January, he was seen by the neurologist and neurosurgeon. Both doctors believed Matthew had migraines and that the brain cavernoma was not related to his symptoms. He was put on medication and we tried to figure out what was triggering these headaches. As time went on, his symptoms got worse and new ones appeared. The headaches were 4-5 times per week and he was waking up at night vomiting. Then came the scary ones...he would complain that he couldn't feel his arms or legs, he was having complaints of vision changes where things didn't look right (which we now know are actually focal seizures). In February 2013, Matthew had another MRI. This MRI showed a second cavernoma in a different part of the brain. At that time, this neurologist still wasn't convinced that his symptoms all went together. She felt he had migraines and possibly a genetic condition that accounted for the cavernomas. From here, Matthew was seen by a slew of doctors (geneticist, ophthalmologist, gastroenterologist, radiologist, a second neurologist...you name it, we saw it) and a slew of tests (abdominal MRI, fructose testing, lactose testing, EEG, blood work). Finally, just this month, we found a doctor that listens and has a possible answer. They believe that Matthew has the genetic/familial form of a condition called Cerebral Cavernous Malformations. Here is a link that has tons of information: Angioma Alliance
At this point, we are working on finding a medication that controls his headaches and seizures with minimal side effects, and fighting insurance to approve genetic testing. His next MRI is October 16th and we will meet with the neurosurgeon the following day. As of now, there is no true treatment for this disease. All we can do is control the symptoms with medication. The next option would be brain surgery if/when his seizures can no longer be controlled or he has a large bleed/stroke. Sitting back and waiting for a catastrophe is just not how we roll folks! Cory and I are getting involved with the Angioma Alliance (see above link) to fight for research, clinical trials, and treatment..more about that another time. But for now, if you could please pray for my lil' man. Pray for relief of headaches, fewer side effects and ultimately healing! God is good, all the time-we are holding onto the promises our Lord has made and the knowledge that He is sovereign in ALL things!
