Tag Archives: Epilepsy

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

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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“If you spend too much time waiting for the storm, you’ll miss the sunshine.”

Day 5 of Blogging for TSC Awareness Month

by guest blogger Amy Dublinske  (Kansas City, Missouri)


kier06“If you spend too much time waiting for the storm, you’ll miss the sunshine.” A wise quote to live by, though easier said than done when battling a chronic illness.  Realistically, with the tribulations of tuberous sclerosis complex it does feel like you are always waiting for the other shoe to drop, waiting for the train that’s about to hit you or walking through a land mine.  Our journey with TSC officially began one decade ago today, 05/05/05.

Cinco De Mayo is the ultimate celebration in the United States and kier03-2Mexico.  A day observed to commemorate Mexican army’s unlikely victory over French forces.  For the past decade Cinco De Mayo has carried a new meaning for me and my family.  On May 5th, 2005, our precious daughter Kierstin Gabriella was born….with tuberous sclerosis complex.  May 5th now marks the day we officially entered “The TSC Club.”  The dreaded diagnosis that we truly feared that may just become our reality.  Cinco De Mayo has truly been a bitter-sweet day for the past ten years.

kier09While pregnant, doctors told us that there was a 50/50 chance that our baby girl had TSC due to numerous cardiac rhabdomyoma tumors.  We researched TSC.  We talked to several TS families but were plotting out how we would tell them the day that they determined that our baby “really didn’t” have this awful disorder after all.  Denial is a happy place, Right?! Unfortunately that day never came and we were officially inducted into “The Club.”

I can clearly recall the cardiologist trying to gently explain Tuberous Sclerosis to this very pregnant mom-to-be for the first time ever hearing those words uttered. Though his English was broken, the one thing that was abundantly clear in any language were his words “we hope it is not Tuberous Sclerosis.  This is a very grim diagnosis.”  The words “brain tumors, heart tumors, kidney tumors, mental retardation and there is no cure” were also communicated rather clearly.

When leaving the hospital, while nearing the elevator I witnessed a mom pushing her infant daughter in a stroller.  She began lifting her in the air and playing peek-a-boo with her to the point of the baby belly laughing.  I suddenly became weak in my knees and collapsed right there on the floor at over eight months pregnant. It suddenly struck me that we may never have this with our baby girl or may never experience the privilege of hearing those belly laughs.  How could this possibly be happening to us and to our precious daughter that we longed for years to have? We had so many hopes and dreams for this little one and all those dreams seemed to be suddenly shattering with just one sonogram.   I think at that very moment I knew in my head that she had TSC, yet my heart wasn’t willing to accept it.  The next month is a complete blur as we prepare for the unimaginable while still holding onto a small shred of hope that they might be wrong.

Essentially, May 5th doctors confirmed what we dreaded and the medical journey which was filled with much uncertainty began.   She was induced with the anticipation of open heart surgery given large rhabdomyoma tumor growth.   Though her heart was more stable than initially expected, we quickly received the dreaded diagnosis of TUBEROUS SCLEROSIS.  All of her organs were affected with tumors at birth.   We were devastated beyond words!  A short glimpse of the journey begins with evaluating every organ by a new “ologist.”  Countless appointments, numerous medications, relentless seizures, years of therapies, multiple hospitalizations, brain surgeries and weeks and weeks and weeks advocating and educating about this diagnosis that I have quickly become an expert on is what our “new normal” consisted of.  No one imagines their baby struggling to reach the most basic of milestones like rolling over or sitting up.  Who plans their family vacation destination in conjunction with medical appointments with specialists from across the country?  Every parent of a child with special needs grieves their child’s diagnosis at one point in time.  I remember silently crying in the shower in the mornings, so that no one would hear me.  I am ashamed to admit that I have never completed Kierstin’s baby book. Every time I would try it would be a reminder to me that she had not met any of her first year milestones, or if she did, briefly she would lose the milestone with the next seizure.

If I knew then what I know now, I would definitely have spent more time in the sunshine and less time waiting for the storm.   “The storm,” which was more equivalent to a never-ending roller coaster ride with some of the most gut-wrenching twists and turns you can imagine, has taught us how to live in constant chaos and crisis so to speak.  This journey and particularly Kierstin has taught me more about life than anything else I have ever experienced.  Throughout the years I have had dozens of people say “You are such a strong person, this must be why you were chosen to be Kierstin’s mom.”  Being strong is the ONLY option.  We refuse to allow TSC to define our daughter, but more importantly SHE refuses to let TSC define her!!

royalsKierstin has taught me unconditional love to a higher degree than I ever thought possible.  Though my dreams of having my first born daughter are much different than today’s reality, I have so much to be thankful for.  This journey with TSC is not quite the journey of my dreams; though Kierstin is the daughter I have always dreamed of!!  This year we celebrate Cinco De Mayo thankful for God choosing us and mostly trusting us to be her parents.  We are eternally blessed and thankful for this privilege of meeting our hero on May 5th of 2005.  Many people dream of someday meeting their hero, but fortunately I gave birth to mine!! So after a decade battling TSC, Cinco De Mayo is now my day of celebrating my HERO!! Enjoy the sunshine, forget about the storm.  And Always Remember: We Will Give Everything!  But Up!!

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To TSC:

Day 4 of Blogging for TSC Awareness Month

by guest blogger Annaka Vimahi  (Utah)

originally posted on her blog

To TSC (Tuberous Sclerosis Complex):

We had never heard of you when you randomly entered our lives,

You ruthlessly descended on our first born son, changing the trajectory of his life.

How cruel you can be, filling our lives with calamity.

Because of you, our son endures severe autism and ADHD.

We are constantly guessing when he’s in pain, he cannot speak.

We never know what you will do next.

A new surprise challenge lurking around every corner.

So many life-threatening possibilities:

Brain trauma, kidney bleeds and maybe failure.

Will his heart stop beating? Or will he go into status epilepsy?

You are unrelenting, unforgiving, you see?

Controlling every single moment we breathe.

We are slaves to all your twists and turns.

We are not free: to travel, to play, to relax,

To make quick trips to the grocery store.

We cannot leave any door open,

Or any item overlooked in our house.

Or, it will end up ruined, destroyed, thrown about.

The financial burden you inflict is enormous.

You wreak havoc in every aspect of our lives.

You make us play a constant guessing game.

We don’t sleep. We are never at peace.

You demand all our time and energy.

I fear shutting the door when I lay my son down to sleep.

I panic, “Will my son live through this night?”

You leave us feeling crazy,

Fear driving our days and nights.

I see TSC in every ailment, big or small…

Every out-of-the-ordinary move could be a sign of something big.

I’m constantly questioning, “What is real and what is not?”

You control our past, present and future;

Have taken our free will. I despise you.

You inflict so much pain: emotional, mental, physical.

We are forced to bend to your command,

As you demand all our time and energy.

You leave us isolated. We feel so alone.

No sure answers or solutions.

Even professionals don’t know how to help.

You don’t draw empathy,

And leave us feeling like no one understands.

You are unknown to most,

Yet unlike cancer, you leave no possibility for a cure.

Unlike diabetes and heart disease, there is no way to proactively manage you.

You have created an impossible task,

As we try to deal with what you throw at our son.

You have tried to take my child from me.

In spite of this, he shines.

Through all the chaos, I can still admire his curly hair and his deep brown eyes.

His eyes: so inquisitive. There is so much there.

You try to block it, but I can see who he is.

You try to break us:

Creating harrowing situations that leave us in anguish.

You have come close to success so many times, making us question who we are.

But in those moments we fall to our knees.

Praying to God to help us through each tragedy.

Our son brings joy to all those whose paths he comes across.

Without you, who would we be?

Would our child’s accomplishments mean so much?

Would his laughter and smile be as bright?

You’ve made us realize: We are not here for him, he is here for us.

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Unconditional Love

 Day 3 of Blogging for TSC Awareness Month

by guest blogger Caroline Clyborne Ramirez  (Austin, Texas)

image4-2Since our son, Leif, first learned to talk, we’ve been drilling him on a basic call and response:

“Why do I love you?”

“Because I’m your son.”

We did this because we wanted him to know that he was loved, no matter what. He had our permission to be lost and a knucklehead while figuring himself out. He could worry about other problems, like having to eat vegetables and sharing. He did not need to worry about courting his parents’ love.

Then, my daughter was born. At four months, we learned that Colette had a diagnosis– tuberous sclerosis. She had about 20 benign brain tumors and epilepsy. We didn’t know if she would be smart or independent. Our blank slate of a baby came with no guarantees.

The grief and terror of the first couple of months were intense. I image7wanted to pull away. I wondered if I could ever love this child like I loved my son. What had I told him? “I love you because you’re my son.” I’d promised him. Could I sincerely offer that to my daughter? I felt like a fraud.

Life got busy. I stepped away from my career and into the life of a medical advocate. Colette had weekly PT, OT and eventually speech therapy. She had frequent overnight hospital stays to adjust medication any time we saw seizure activity. There were eye appointments every 3 months because her seizure control medication endangered her vision. We drove to Houston every image6three months to participate in a clinical study. The insurance company required weekly hounding to cover the basics. It was only the beginning, and already, the tasks made me a busy bee. My son loudly demonstrated his frustration with the redirection of my attention. I tried to be enough and constantly fell short. I worried that our sleepy, medicated baby was the most flexible member of the family. Her big blue eyes sparkled, and she never complained.

It’s an odd thing to be given an open-ended diagnosis. There was no adjusting to the news. The hope and despair pulled me up and brought me down like a roller coaster– tea leaf predictions from smiles and gas. I wanted to either grieve or enjoy my child. The image2“what ifs” of the future were easy to Google, from skin lesions on her face to LAM in her lungs. What if she can’t learn and spends the rest of her life in diapers? What if she develops behavioral issues and hits us? My one life experience as a substitute teacher in a Special Education had taught me that was NOT my population. I did not reach out to moms with older kids whose fates scared me. I clung, tooth and nail, to the shallow end of the pool and hoped we would never have to drown.

I was in constant fear that she would take a turn for the worst and we, as a family, would not be okay. Meanwhile, Colette was a bright-eyed and happy baby. She splashed the water in her bath and gnawed on her Sophie giraffe. It was a bizarre juxtaposition. Colette was the poster child of innocence. I was her strung out Mom. In tiny slivers of clarity, I dug my nose into her neck and smelled her yummy baby smell. Regretfully, I often saw TSC more than I saw my daughter.

That was when she had seizure control. When that ended at 10 months old, my nightmares developed a physical form. I took detailed notes of what movements we saw and sent them to the white coats in this army. Please, I said. Please protect Colette. Our precious baby continued to smile, but she almost never babbled.

Even though we were creeping toward the chasm that I’d feared would swallow our family, I felt calm and sad. I acknowledged more publicly what was happening, and wept big tears as I faced how little control we had over a disease that had no cure. Colette had good days and bad days, and so did I. I spent my time taking her to appointments, arguing with insurance, and trying to keep things normal for our family. I felt depleted and I felt despair.

I realized at some point that my nightmares were a very loud image3statement to both my kids. Colette’s imperfection had made Mommy sad. TSC was in her DNA. Colette, by simply being born, had brought TSC and all of its challenges into our home. Her sweet demeanor may have been lovely, but it was a consolation, a kindness that momentarily offset a mountain of pain. She had more to worry about than having to eat vegetables, and even more to worry about than experiencing seizures. She had caused her family to suffer by means of existing. Something was terribly wrong, and that something was within me.

There was a woman on Facebook with a daughter who was cognitively two and physically 25. She kept posting proud mommy posts, and she baffled me with her acceptance of her child. I didn’t understand her, but something in me was shifting. I realized that a 2-year-old is lovable and delightful. My expectations of her child– that her child act 25– imposed onto her child’s existence something presumably painful that might not be real.

As I thought about her child, I was flooded with memories of my beloved Grandpa. Grandpa had Parkinson’s. He was sweet. He threw a purple foam ball back and forth with me. I didn’t “know better” that he’d lost something. I just loved him, and he loved me. Maybe I didn’t need the conditions I had for loving my child. Maybe I could just love my child.

As my eyes opened wider, I became aware also of how my vanity bled into my relationship with my son. He was so smart. He was so handsome. My pride appreciated pieces of him he never chose for himself. It was an easy mistake to make. In a family of nerds, his brains made him feel like our boy. However, he was getting extra credit because of his luck– because I was proud of his gifts.

How unfair of me. My job was to help him develop his character, and my preference for his smarts added conditions to my love and modified my expectations of him. His sister aside, I saw a rot forming in my parenting. Colette’s condition challenged my vanity and made me see both kids more clearly.

Humbly, as a flawed person mid-stream, I am challenging myself to change what I expect of both my kids. I am going to love them both because they’re my kids. I am not going to give Leif extra credit for being smart, and I am not going to turn Colette’s existence into a burden anymore. I’m just going to support her health as she needs and enjoy her in the present, stripped of all the disparaging “shoulds” that diminish her humanity. If I need to, I’ll think of Grandpa and find a way to throw a ball to my daughter. I’ll appreciate the day she can throw it back, but I won’t love her more for it.

I’ll keep love simple. That way, my kids can stop worrying about the quality of my love and start focusing on the road in front of them. When I whisper in my daughter’s ear that I love her, I now really know the answer. I love her because she’s my daughter– no matter what.

Brain surgery is coming this month. Finally, we’re ready.

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You are not winning, TSC.

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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Tuberous Sclerosis Complex Awareness Month – Joy

Third Annual Blogging for TSC Awareness Month  Day 1

by guest blogger Ryan Kennedy  (Woodward, Iowa)

Joy

Who knew what this journey had in store?

I was going to be a father again.

My wife held a child within.image1

A healthy birth, everything looks great!

Joy!

Who saw this coming?

A heart murmur

A routine doctor’s visit

A heart tumor

Hope.

This can’t really be TSC. Can it?

More doctorsimage3

Neuro, nephro, cardio, genetics

My son has TSC.

Pain.

How bad will it be?

Infantile spasms

Sleepless nights

My son has autism.

Grief.

What does this mean?

He walks.

He laughs.

He smiles.

He has joy.

He gives me joy.

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Georgia Rally for In-State Cultivation of Medical Cannabis

As I previously posted, Gov. Deal stripped HB1 of the growing option, leaving it as immunity only. There will be a rally at the Capitol tomorrow to demonstrate the support for in-state growing. Please attend to show your support.

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There are currently 17 medical conditions included in the bill. However, the Georgia Sheriffs’ Association and District Attorneys’ Association do not support the expansion to other diagnoses beyond epilepsy. Please contact your local sheriff and DA.

Hope to see you tomorrow!