Day 7 of Guest Blogging for TSC Awareness

By guest blogger ZZ Mylar (San Antonio, Texas)

My husband and I always knew we wanted a big family.  After the birth of our first child, we waited just a year before trying again.  And kept trying.  And kept trying.  We were heartbroken to find out that we had “secondary infertility” and that it would be difficult for us to get pregnant again.  After three more years of every procedure imaginable trying to conceive and countless prayers, God led us to adoption.  While adoption is a wild ride unto itself, we were blessed to be led to Las Vegas, Nevada for the birth of our second child … Emily “Presley” Mylar . . . what a Vegas win!  Her birth parents had been through some rough times and while they loved her very much, they knew they could not care for her in the same way that we could.  We were overjoyed to bring her back to our home in San Antonio, Texas, and our four-year-old daughter was thrilled to be a big sister.

Presley ruled the roost since day one.  She was vigorous and outgoing even as an infant.  She talked early, crawled early, and walked at 10 months old.  Starting at about 18 months, we thought she had hit the “terrible twos” early.  But she never outgrew them!  Her tantrums started getting worse and worse, and I would get a sinking feeling in the pit of my stomach when she had one, convinced that something was wrong.  I even half jokingly told a friend of mine, “I bet she has a brain tumor!”

At age three and a half, Presley started having absence seizures.  Except we didn’t know what they were.  We thought she was ignoring us on purpose and being passive aggressive for a change.  We even punished her after these episodes.   Finally I called the doctor about what was happening and she had us come right in for a CT scan.  We got the call that night that Presley had TSC.  Of course this started endless research on my part and many doctors appointments to follow.  We saw a geneticist, neurologist, dermatologist, ophthalmologist, dentist, therapist, psychiatrist and a cardiologist.  We began trying seizure meds and finally went to the TSC clinic in Houston where they confirmed what all the other doctors had already told us.  Presley had TSC.

This diagnosis began to explain her crazy behavior and the white spots on her skin.  We found that she had tubers in her brain and we could expect a yearly brain MRI and renal ultrasound.  We were told that her heart was clear, but we should expect kidney and lung issues and tubers on her face, nails, eyes and teeth.  Her mental development could be stunted.  She may not lead a normal life, only time will tell.  Until then, hang in there, they told us.

Through the next couple of years, we did our best to manage her behavior, though it was very trying for all of us.  Luckily, her seizures stopped after a year (though the doctors assure us that they’ll be back with a vengeance at some time).

At age five, Presley began kindergarten, and we found out that she was very smart but had many social limitations.  This is when we began ADHD meds and her life (and ours) changed.  We began to see the sweet Presley we knew was in there somewhere and she began to make friends again.  Our family continued to grow (we have six kids now – yes, God has a sense of humor!) and the house was actually more peaceful than it had ever been.

Today Presley is an active fourth grader.  She takes quite a cocktail of meds each day to keep the Sweet Presley on the forefront and the Impulsive Presley buried down.  From Zoloft and Intunive, to very high doses of Focalin, we get a lot of looks and raised eyebrows from other doctors, but it is what is working for us.

As with many kids on ADHD meds, school gets the best of Presley.  By the time she gets home, she is tired and cranky and we’re not quite sure what to expect day-to-day, though this is getting better as she matures.  We found that she really needed an outlet to let off some steam and boy, did she find it!  Her impulsivity and anger are heightened being in tight spaces, but when she hits the soccer field, no one can stop her.  She has moved from YMCA teams to a club team here in San Antonio where she plays at a grade level higher than her own and at the top level of that age group.  She makes all As in school and gets excellent marks in leadership, manners, helpfulness and CONDUCT.  She has become a leader in her religious education classes and is wonderful (most of the time) with our younger children.  We could not be more proud of her.

I have been very hesitant to post on the TSC facebook pages because I realize how blessed we are.  I read about parents watching their kids struggle in school, socially or even to dress themselves.  I see posts about surgeries and hospitalizations and hear of drug therapies we know nothing about.  And I don’t feel worthy of telling our story.  My little girl has a pretty mild case of TSC, but it has hit our family hard.  We are blessed that she is bright, has not had kidney issues to date and has limited growths on her precious face, but her future health is not clear.

Whether we are dealing with mild or severe cases of this disease, we all have one thing in common: We want to kick TSC’s butt!  Our family prays for all of you affected by this disease.  We pray that Presley will continue to excel, to go to college without being tied to drug therapies and social boundaries, and to have a long and happy life.  We love our Presley . . . our big Vegas win, and we will fight for her to win against TSC.  Either way, we have truly hit the jackpot.

Related articles

• The epilepsy lie . . (undiagnosed.org.uk)
• World-first study predicts epilepsy seizures in humans (sciencedaily.com)