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Guest Bloggers For TSC Awareness Month, Tuberous Sclerosis

Doctors informed me he would need a wheelchair…imagine my surprise when he took his first steps.

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Day 7 of Blogging for TSC Awareness

by guest blogger LaToya Martin  (Dover, Delaware)

20150227_120253-1-2Massiah 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, 20141217_134205without 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.

20150131_154427Massiah 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.

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Guest Bloggers For TSC Awareness Month, Tuberous Sclerosis

You are not winning, TSC.

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Day 2 of Blogging for TSC Awareness Month
by guest blogger Mary Garnett  (Roanoke, Virginia)

10530697_10152504883715700_7231308209995918033_nI was just 24 weeks pregnant when the words “tuberous sclerosis complex” were muttered to my husband and me, and pamphlets about this disorder were thrust into our hands by the doctor. They found cardiac rhabdomyomas on my otherwise healthy baby boy in utero. From that point on, I had biweekly monitoring by multiple doctors, scanning every bit of our child to detect any other marker of TSC and they did not find anything, even after a fetal MRI.

Our little boy, Owen, made his appearance on March 16 at exactly 1619175_435903126574175_3888823022529246311_n40 weeks. Everything about labor and delivery couldn’t have been more perfect and our son scored wonderfully on Apgar and hearing. After four days and some NICU monitoring, we were able to take our little man home to enjoy. We didn’t realize how soon that would change.

Three and a half weeks later, I began noticing a twitching of Owen’s r11046409_447237978774023_1711788437182916419_night arm. I had done my research on TSC and the different types of seizures I should be on the watch for. Intuition was telling me these WERE seizures. My husband was more optimistic, but the twitching was increasing, so off to the pediatrician we went. Following that appointment, we were immediately sent to be admitted at the hospital after our pediatrician got to witness what I had been seeing all along.

Multiple tests including a lumbar puncture and bloodwork came back normal. It was not until a VEEG was done that we got our confirmation that these were indeed seizures. A brain MRI the next day then officially diagnosed our son with TSC after finding multiple tumors in our son’s brain. You know when four doctors, a chaplain and social worker walk into your hospital room at the same time, that the news can’t be good. Owen was started on his first anti-epileptic medication that same day. We were thrilled when it worked from the first dose and were excited to go home, thinking this was the end of seizures for Owen. That medication worked for three days.

Multiple seizure types, six medications, one diet and one brain surgery later…

Owen is now 13 months old and experiencing freedom from seizures for the first time since he was a newborn. How has someone who just celebrated their first birthday been through so much already? How does he continue to smile and play despite seizures wreaking havoc on his development for 11 months? Because this kid has strength and spirit that only God could bestow.

We don’t know what the future holds for Owen, but we don’t care. He has taught us that no matter the battle, the strength to continue on will always be there for him, and for us that is enough. You are not winning, TSC.

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