Halo’s Story: Febrile Infection Related Epilepsy Syndrome

November 28, 2016

by Felicia Caples

My daughter, Halo, was always such a interesting little girl. I was told I could never have children, but yet she still came and was a blessing. During infancy, Halo had a mild temperament. She always smiled and was just a happy baby. Teething and terrible twos were a piece of cake for her. As she grew older, small medical issues that later needed surgery started to occur. But as always, this little girl, even after recovery, would smile and remain happy.

I’ll never forget the second day after she had her second surgery, she woke up immediately, grabbed her microphone and started singing in the mirror. I stared in disbelief, like where did this little girl come from? Straight A student , first chair violinist at six-years-old, but in second grade studies. She was very humble, and very respectful. When I was tired from working so much and mommy needed just a small nap, she always stayed by my side.

And if she had to go potty she woke me just to let me know. The weekend of the Fourth of July of this year was the last holiday she would ever spend with me and our family. That Monday Halo complained of a tummy ache with a mild fever. I took her to her doctor and they ruled it to be no more than a passing virus. Days later her fever was consistently high and had to be monitored every few hours for her next dosage of ibuprofen.

I didn’t like the idea of her being that sick as I was suspicious that her doctor might have missed something. So I took her to the hospital. The doctor said the same thing, gave her antibiotics and sent us home. I was on a strict schedule with fever, meds and antibiotics, all day and night. Waking up at what ever time was needed to give it too her. She later felt a little better. Then again worse. Then again the hospital.

The next day Halo was asleep then abruptly woke up screaming –mommy my legs! They were shaking. I immediately picked her up checked her temp and it was 106.00! I shoved down more ibuprofen ran too get more ice packs . Holding her I asked Halo talk to mommy. What hurts? Halo had a confused look on her face and was unresponsive. She moved her mouth, but words were not coming out. She looked away, I snapped my fingers to get her attention. I said Halo if you can hear me point to where it hurts. She pointed to her tummy. Halo immediately looked up fell backwards turned her head to the side and became stiff! I knew she was about to have a seizure. I called 911.
Her body became limp after. I picked her up and talked to her. I said her name with a weak voice, I know you can hear mommy, stay with me I’m right here. She looked in my eyes still not speaking but never took her gaze off me. In the ambulance she was looking around her trying to focus on her surroundings, pulling her hair looking at it as if she was trying to figure out what was going on. When we arrived she was having what I noticed was a partial seizure. I assured her I was here and not going anywhere. In a low voice she said ok. In the exam room the doctors flooded in. My brother came in also. She spoke to him while still slightly shaking. She was immediately moved to the ER . Halo’s breathing became shallow. She was given a tube to help her breathe. My brave little girl was fighting the doctors still while seizing. After she was moved too ICU and induced into a coma. I watched my child suffer seizure after seizure for hours. Doctors asked every question they could to find out the under causing problem of her seizures. One test came back positive for the adenovirus.

The adenovirus is what some call a super cold. This virus is a tricky and sometimes deadly. With fevers that can spike extremely high and are difficult to control. They immediately began to treat her… However there is not a cure for it and it basically has to pass on its own. The doctors also started her on seizure medication. The virus soon passed, but oddly Halo’s seizures did not . Her temp also subsided.

I found out that day that the area of her brain where the seizures were affecting was the area of the brain where perception of information is processed. That would have made sense why she was having such a hard time understanding and touching things in her surroundings. Doctors tried every medication known to treat seizures. Blood, spinal fluid, everything was taken to CDC across the street for testing of every disease, virus etc. known to man. The results showed nothing.

Halo’s seizures were powerfully resistant too all medications for seizures. Later after finding nothing the doctors diagnosed her with F.I.R.E.S. Febrile Infection Related Epilepsy Syndrome. FIRES does not have a cure or a reason for what causes the continuation of the seizures.
Halo was now on six different machines. After her diagnosis doctors started taking her off certain medications. Prolonged use of some would cause kidney failure and other organs to fail.

Unfortunately, after I brought that part to the attention of the team of doctors working on her, it was to late. Halo was already on dialysis. In one country when a child such as Halo has uncontrollable seizures there are certain medications they do not use because of this factor. Early during initial onset of her seizures I recommended cannabis oil as well as the Ketogenic diet.

The doctors didn’t think that was considered a good idea because there was not enough medical research to conclude that it worked effectively. Two weeks later , the Ketogenic diet was given to her and I was administered a medical cannabis card to legally obtain the oil. I stayed by my baby’s side every day. I hardly ate. I read her favorite bed time stories and scriptures from her bible. My family flew into town and we stayed everyday, closely watching Halo and her care.

Her health was failing. Halo was fighting hard to stay alive. Her tiny heart was failing and I immediately came to her bed side and spoke to her. Her doctors said that she would not make it through the night. I told Halo to show them that today is not the day you will die. Show them who God is. That night I prayed with her. I watched through the window at a distance the several helicopters fly children in from all over. Wondering and looking back from day to day. One helicopter to several. How many children were actually going home or leaving their parents with just memories? I was there 29 days calmly ignoring my mind’s mental insane asylum of fear. I often, at night, walked the hallways when I could not sleep. And through the glass doors witnessed the over bearing sadness of parents with sick children and the look that I often felt of feeling helpless and not being able to kiss the boo boo away.
A few days later I snugged up close to her. I told Halo how proud I was of her because I always taught her to fight. And that I loved her very, very much. Halo loved butterflies, especially purple ones. On her pillow the hospital not knowingly gave her a pillowcase of purple butterflies. Laying with her on her pillow I kissed her and repeated I love you until she took her last breath in this world.

They say FIRES is rare. So rare that it is only one in a million children diagnosed with this disorder. Children are dying from this disorder or if they live, they have severe brain damage, with seizures off and on. Their are small support groups and one known organization in Europe. This disorder is not localized, but world wide. There is also a board of national neurologist who currently study this disorder. One who personally flew in to help my daughter. I have seen and met parent’s who have children who died from FIRES. And in some cases stayed hospitalized for a few years.
People need to know and become aware of this terrible disorder and more research needs to become available before another child suffers.

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