Tag Archives: Febrile seizure

I didn’t hear anything from that moment on even though I saw the doctor’s mouth moving, except “there is no cure.”

Second Annual “Blogging for TSC Awareness Month” Day 30

by guest blogger Katie Creamer  (Long Beach, California) 

keenan in carTwo and half years ago one of my biggest dreams had come true; I was so happy and extremely proud when my healthy and beautiful baby boy was born.  My husband and I had been waiting and preparing the best we could for this exact moment for a long time and we were finally ready.  My baby was perfect; beautiful, big, had a full head of hair already, had 10 fingers and toes, and alert from the first moment we met.

This being our first baby it took us a while to understand each other’s needs as I recovered from my Cesarian section and immediately started breast feeding, but within a few weeks we were perfectly in sync and in pure bliss.  Being a mom was amazing and I immediately knew why I was put on this earth; to be Keenan’s mommy.  When I look back at those first few weeks, the only clue we had that our life would soon be shocked to the core was a white spot/ birthmark on his knee that our pediatrician had waved off as no big deal.  We quickly began the newborn pattern of the day filled with eating, sleeping, and pooping; we thought everything was perfectly normal.

Where our story is slightly different then a lot of others lies within the next 18 months.  We lived the next 18 months as a normal, healthy, happy new family.  Keenan hit milestones on time and was a constant thrill to watch him cognitively advance and become a little person.  We were doing perfect and beginning to plan for a sibling for Keenan in the future.  Then at 19 months old Keenan spiked his first high fever which caused a “febrile seizure.”  Witnessing that was what I thought would be the scariest moment of my life. We called 911, had our first ambulance ride, and by the time we got to the hospital everything had settled down.  We were told Keenan had just had a febrile seizure which was explained to us as keenan after surgery 1“no big deal” and “some kids are just susceptible to this, but they eventually grow out of it.”  Next time, “just remain calm, then when it stops bring him in afterward”, “they can last up to 15 minutes, but just try to remain calm.”  We were told this is common (we even saw another baby come in after a febrile seizure while we were there), we were told how to avoid fever spikes and seizures in the future with high doses of Advil and Tylenol, and then sent home.  Proud of how my husband and I handled this emergency and what we thought might be our biggest challenge, we went on with our lives.  I researched what I could and tried not to worry too much, till six weeks later when Keenan had another fever.  With this fever I was ready with alarms for meds throughout the night but didn’t need them because I didn’t sleep at all and just watched him through the night like a hawk.  He had made it through the night without a problem so I went to work in the morning and left Keenan in my husband’s capable hands.

I’ll never forget at 10 am when I was finally able to check my cell phone and saw that I had five missed calls from my husband.  Listening to the voicemails confirmed my worst fears, I could hear my husband saying, “it’s ok Keenan, daddy’s here.”  My heart dropped because I knew Keenan was having a seizure.  I called my husband quickly to find out what hospital to meet him at, and to my surprise he hadn’t called 911 yet, now realizing he was following the ER doctors instructions and he was following perfectly, “waiting it out.”  My mama gut came screaming out and told him to call 911, and he did.  When the paramedics had arrived he had been seizing for over 20 minutes and they had to sedate him to stop the seizure.  Looking back, our first mistake was listening to the ER doctor. My son had experienced a status event.

IMG_5124jpgAfter a few hours of my son lying lifelessly in the ER, he started to struggle to open his eyes and make sense of his situation.  Quickly we noticed that he could not move his entire left side or even move his eyes to the left even when I called him.  We were scared to death and a CAT scan was done on his brain right away.  Within 15 min they told us that he had a brain tumor and multiple “lesions” on his brain, and they told us he had something we had never heard of, Tuberous Sclerosis.  I didn’t hear anything from that moment on even though I saw the doctor’s mouth moving, except then I heard “there is no cure.”

We sat in shock for the next two weeks, researching what we could (but the internet scared us to death) and making many specialist doctor appointments.  We heard many grim possibilities, but the scariest we heard was that “how this disease will affect your son can not be predicted” and it’s all about dealing with one symptom at a time as they pop up for the rest of his life.  Keenan also has been diagnosed with polycystic kidney disease, has a “medium burden” of tubers in his brain, one SEGA, and multiple nodules.  We now sit in the unknown trying to cherish every moment because we have no idea what the future will bring.

Coming up on 1 year since Keenan’s diagnosis we have gone through three different anti-seizure meds trying to control his 4-20 seizures a day without any success, we have faced the tremendous life changing decision to make to try brain surgery on our 2 and a half year old son to try to stop the seizures, Keenan has to have MRI’s every 6 months on his brain and abdomen to watch the multiple tumors and cysts on his kidneys, and blood work every 3 months.  Everything and all his tumors have to be monitored to decide when the next major decision has to be made.

Sometimes we feel like we are just waiting for the next bomb to drop, but we have learned so much in this past year.  The major lesson we’ve learned is to prepare for the future but live in the moment: whether it be good or bad it won’t last long.  So cherish the good times and live them to the fullest!

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It Affects Us All

Day 18 of Guest Blogging for TSC Awareness Month

By guest blogger Tina Carver   (Eureka, California)

Please check out Tina’s blog at http://captainjacktastic.wordpress.com

Jackson and Tina.
Jackson and Tina.

Prior to April 2009, all that I knew about Tuberous Sclerosis Complex would fit on the head of an angel dancing on the head of a pin.
In other words:
NOTHING.
Never heard of it. AT ALL.

Once I met Jack, all of that changed.
I became Jack’s stepmom in September of 2010, and shortly thereafter, his birth mother left the area, leaving us with sole custody.

Now, I have to be honest.  The hardest part of Jack’s TSC  had already happened.  The in vitro diagnosis.  The debilitating and never ending febrile seizures.  The rounds and rounds of various seizure meds.  The brain surgery.

That all happened BEFORE.

In the TSC community I feel a bit adrift — I get asked questions about the specifics of his disease — the types of tumors, etc– and I cannot answer them.

My life with TSC is all about moving forward and making Jack’s life the best it can be in the here and now.  It is also about dealing with how the disease affects US: myself, my husband, my daughter.

Our life revolves around “what if’s”.  Every plan that we have has a back up- “just in case”.  We have emergency seizure meds in each of our cars, Jack’s backpack, the home.  We plan and plot ANY trip to make sure we are near hospitals.  My husband and I get THREE WHOLE hours a week to be adults outside the house.  My daughter knows that any school function most likely means only ONE OF US will be there (respite is a harsh mistress). Tuberous Sclerosis may have had its way with Jack, but it also has the rest of us in its grip EVERY. SINGLE. DAY.

Jackson and Dad.
Jackson and Dad.

But there are days……lovely days like last Sunday when all of us were in the backyard.  My daughter running fully clothed through the sprinklers, much to the delight of Jack who had his favorite spot on what he calls the bouncepoline.  The sky was clear and sunny.  There was laughter from all.  And it’s for these moments that we continue on.  THAT is what makes it worth it all.  We forge ahead because these moments make life worthwhile.  These moments balance those tense moments in the ER, the sedation for MRIs, and the uncertainty of the future.

Now, to be honest, how Tuberous Sclerosis has had its way with Jack has NOT been kind-

Febrile seizures have left permanent damage.
There is a thick scar that crosses his scalp from brain surgery.
There are developmental delays.  There are physical issues.
There are over 30 tumors in his brain.

But over the past few years we have seen progress.
We have speech and communication.
We have staid the growth of the tumors.
We have found the right cocktail of meds to keep away the seizures.
And Jackson the boy is blossoming……

SO what else can I say about this disease that I have come to know and loathe?
That it took away one boy and left us another.
One that I love just the same.

Jackson hanging out in Darrah's room.
Jackson hanging out in Darrah’s room.

JACKSON The Poem

In my dreams

I constantly see

You

Your smile so bright

and beautiful

A mischievous grin

to match the

glint in  those

bright blue

Eyes

You run

Untroubled

Carefree

with an easy

and natural

gait.

Laughter unfettered

Musical

And there are

no tumors

no damage

Or delays.

There is only a boy

who is

Not You.

Jack loves the number 9.
Jack loves the number 9.

Alex’s Journey

Day 6 of Guest Blogging for TSC Awareness Month

By guest blogger Kelly Oberg  (Merrionette Park, Illinois)

make a wish 2013 kim sd card 092Looking at Alex you would never know there is anything wrong with him. Alex has blonde hair, blue eyes and a smile that will capture your heart from the start. Alex has always been such a happy little boy. No matter what he is going through, he always has a smile on his face. Even though Alex cannot vocalize his wants and needs, we as a family have learned how to communicate with him in different ways. And being strong parents, makes for a strong little boy, who is being given the best care and love that can be given to our special little angel. There are never enough words that I could find to describe the love I have for my son Alex. In the past three years he has taught so many people so many things. He has taught me so much, that in a lifetime with him I would never be able to repay him for all that he’s taught me. Alex was born July 14, 2009,  and the moment Alex was born he made an impact on everyone around him.

We were told when Alex was born that he had two holes in his heart and a heart murmur. The doctors were very hopeful that the holes would close before he reached two years old. The holes closed by the time Alex was a year old on their own. At this time we had thought that our prayers had been answered and Alex would be fine. Little did we know that there was another plan for us. I noticed early on that Alex was not big on sleeping; he would sleep for a hour then wake up screaming. He was also not hitting his developmental milestones like normal children would. After numerous trips to his doctor, we were told Alex was normal and just had colic. We knew it was not colic that we were seeing. It was something else, but as young parents we didn’t really know what it was that Alex was doing, other than not sleeping.  Alex has always been a big child with a big head and big body; he came into our lives at a whopping 9lbs 8 oz. But as he grew his doctor was concerned about his growth being so big, so she sent us in for an ultrasound of his brain. We found out Alex had calcifications on his brain and hydrocephalus. Hydrocephalus is when you have too much fluid on or around your brain, and his doctor told us we just had to monitor Alex; if over time it got worse, we would address it then.

In February 2010, we learned Alex had severe hearing loss in both ears. After a few hearing tests, the doctors told us it was nerve damage, and they didn’t know if he would ever be able to hear. They suggested we try putting tubes in his ears. We did get the tubes in March 2010, as well as his adenoids taken out. Alex started to vocalize then. It was like a whole new world was opened up to him when he could hear.

In June 2010, while taking a bath, Alex was not acting right, so we took him into his room and kept an eye on him. This is when I experienced seeing my first seizure. At the time Imake a wish 2013 kim sd card 050 had no idea what a seizure looked like. Alex was pale and laying so still on the bed just staring at the ceiling. I remember feeling so scared. I have never felt more scared than that moment looking at Alex. Within a minute or two, Alex came out of it and went to play. We watched him closely thinking he just didn’t feel well.  The rest of the month, Alex did this three more times. The third time we decided to go to the emergency room. After describing what we saw, the emergency room doctors told us that Alex had a seizure, and because he had a fever, it was just febrile seizures. Febrile seizures usually go away when you reach age 5, but when you have a fever as a child you have a seizure. The doctor told us he would grow out of it. We were relieved that he would grow out of it and everything would be okay.  In August 2010, on our third trip to the emergency room, the doctors grew concerned because now Alex was having seizures without the fever. The febrile seizures diagnosis was thrown out the window. They admitted Alex and ran a ton of tests from blood to urine to an MRI of Alex’s brain. The very next day, Alex’s pediatrician came into the room to talk to us. She said she had the results from all the tests but wanted to look at Alex for herself with this “wood light”. I agreed, and shortly after starting she stopped and sat down next to me. She started to cry and explain to me that the hospital staff of doctors, as well as her believe Alex had a disease called tuberous sclerosis.  As she cried, she told me that Alex’s life would be very short; he would not talk, would not walk, or do things a normal child would. She told me to have Alex get a blood test to confirm this diagnosis and then make an appointment with the genetic doctor of the hospital. We did that and saw the genetic doctor on October 1, 2010.

It was in that very appointment that I found a side of me I never knew I had. I found a strength I had never seen before, as well as a voice for Alex that I never knew I had before.  After not one, but two doctors told me my son would never walk or talk, let alone do anything a normal child could do, I made a promise to Alex that I would do everything in my being to allow him to have as normal of a life as I could give him, as well as get him the best care I could as far as doctors are concerned. A few days later I found the TS Alliance and found the TS clinic in Chicago, and ever since then I have never looked back. Alex now has a great team of doctors and nurses that know us and love Alex so very much.

Over the past two years, we found out Alex has severely obstructed sleep apnea,  and that is the reason why he has not slept his whole life. Two surgeries later and Alex’s apnea is worse than when we started. Alex’s seizures have become more frequent up to six times a day, even with taking two different medications to help control them. Alex’s neurologist suggested that Alex would be a great candidate for a vagal nerve stimulator.  A VNS is similar to a pacemaker but it is for the brain. It is hooked up to the vagal nerve in the neck and sends a pulse to the brain either at five-minute, three-minute, or one-minute intervals to help control the seizures. Alex was implanted on November 26, 2012, and the VNS was turned on Dec 6, 2012. Since the VNS was turned on we have not seen any seizures at all. We are off one of his seizure medications and almost off the other. This is a long-term help that we were in desperate need of.  After an MRI in August 2012 we learned that Alex’s two SEGAS we were monitoring had grown a lot over the past three months, and Alex was a candidate for a medication called Afinitor. Afinitor is a medication that, to me, is a miracle drug. It helps people with tuberous sclerosis complex, not only with the problem they are taking it for, but in many other aspects too. See, Afinitor has shrunk Alex’s SEGAS by 20 percent in only three months of taking it, as well as helped him be more focused and develop cognitively.

We know that we as a family have a long road ahead of us, but it’s because of Alex that we have the strength to keep going. Alex has been through so many MRIs, blood tests, and hospital stays that he has shown us what a true warrior is by staying so strong during all of it. I feel truly blessed to have Alex as my son; he is one amazing little man.