Day 7 of Blogging for TSC Awareness

by guest blogger LaToya Martin  (Dover, Delaware)

Massiah was diagnosed with tuberous sclerosis complex during utero or fetal development. My Warrior was born with tumors on his brain and in his heart. He also has tumors behind his eyes and cysts on his kidneys. He started having seizures at one week. At six months, he was diagnosed with epilepsy. At 17 months, he was diagnosed with complex partial epilepsy with generalization, generalized convulsive epilepsy with intractable epilepsy and tuberous sclerosis complex. His current diagnosis is partial symptomatic epilepsy with complex partial seizures, intractable, without status epilepticus, infantile spasms with intractable epilepsy and tuberous sclerosis complex. He may have anywhere from one to 18 seizures a day while taking medication. His current medications include Trileptal and Depakene three times per day in addition to  Sabril twice a day. He takes diastat acudial when needed for emergencies. He will soon be taken off Sabril and start Onfi. He will also be taken off his other meds one at a time depending on his seizure control. His current neurologist at A.I. Dupont Children’s Hospital, has discussed the Ketogenic diet, Topamax, vagal nerve stimulator, ACTH and Banzel. He was  on Keppra but needed to be taken off due to aggressive behavior. He has gone through numerous EEG/VEEG, MRI, CT and PET scans, sedations and ultra sounds.

Massiah has developmental and physical delays. I was told that he would be mute and mentally disabled due to the amount of white brain matter, tubers, and tumors on his brain. Doctors also informed me that he would need a wheelchair due to low muscle tone throughout his body,  especially his legs.  So, you can imagine my surprise when he started crawling and taking steps. Also, imagine my surprise when he said mom for the first time on my birthday; just weeks before turning one himself.  Massiah receives aid from an early childhood educator, behavioral, physical, occupational, and speech therapist. He just completed the shapes puzzle by himself after working on it for over a year and now says 60+ words. Massiah is very active and energetic. He enjoys Jake and the Neverland Pirates and Mickey Mouse,  legos, cars, air planes and throwing balls. His favorite movie is Disney’s Cars.