In the beginning…(Part 1)

On August 1, 1998, Lee & I married.  On April 19, 2000 we had our first son, Coleman.  Nearly 15 months later, we had Jack on August 2, 2001.  At this time, Lee was a poultry farmer & I was/am a stay at home mama.  Right after Jack’s birth, the nurses mentioned his heart rate was high.  Not mentioning anything else, I thought all was well.  After transitioning to a regular room for the night, one of the nurses came by for a check on us when Jack was quickly whisked away-his heart rate had soared.  The next day after doing an EKG, it was discovered Jack was born with a rare heart defect called Wolff Parkinson White Syndrome (WPW).  WPW occurs when there is an extra electrical pathway in the heart chambers that can cause an extremely high heart rate.  Many individuals that have WPW are diagnosed by accident, typically by getting an EKG for pre-op testing.  I know God’s hand revealed the WPW before we left the hospital.  In order to keep Jack’s heart rate lowered, he was placed on a beta blocker just two days after birth.  This was a very scary time for me as a new mother.  There are all the wacky after birth hormones going on, caring for two babies & this whammy.  I was terrified Jack would go into a super fast heart rate during sleep, so he slept in the same room with Lee & myself, was nursed, & watched like a hawk!

One particularly funny story from all of this (even won a contest on the radio with it), was Jack’s medication for his heart issue was set to give every 8 hours.  We went home from the hospital on the schedule the nurses were dosing Jack, which was 6:30pm, 2:30am, & 10:30am.  It was 2:30am & you better believe that medication was going to be given at that time.  New parents of a child on a major medication are NOT going to miss a dose!  I sit up, medication is on the nightstand & tell Lee to find the baby.  Well, he gets up & starts searching the house for this one month old baby.  Where could a baby go that could not do anything for himself?  Changing his diaper?  Bathing?  Enjoying the peacefulness of a lullaby?  Being extremely exhausted from the frequent middle of the night nursings, I blame what occurred that night on a severe case of sleep deprivation!  After a few minutes of searching for the lost baby, I realized I had been holding Jack the whole time!  We got a good chuckle out of that & fell asleep within minutes of dosing.  Always a fun tale to look back on.

Once the newness of the diagnosis of WPW wore off, we quickly adjusted the medication dosing so there were no middle of the interruptions.  Life was starting to look fairly normal for us after a few months.  The life of a poultry farmer (hubby’s occupation) is a busy one.  Alarms go off in the middle of the night, early morning risings, & 10-12 hour days everyday.  So it was pretty much me & the boys all day, everyday.  My mama was/is a great source of support.  Spending the night when Lee had to be gone, coming over so I could nap, or taking Coleman to spend time with him.  Soon, life took a sharp turn south.

In February 2001, at Jack’s 6 month checkup with his pediatrician, all was great.  Heart looked good, growing fantastic, making milestones, vaccinations received.  Four days later, Jack was in his play seat at my parents house & started twitching on his left side.  His face was twitching as well as the rest of that side of his body.  This lasted a few minutes.  We drove to the hospital but by the time we arrived, the twitching stopped, Jack was still checked out by the ER doctor who ordered a CT scan (which was normal) & deemed okay.  Two weeks later, the same thing happened again.  This time, we called the pediatrician who referred us to Duke University for neurology treatment, Jack was having seizures.  My first thought was this has to be from the vaccinations.  It was during this time that the controversy of a link between autism & vaccines was going strong & I jumped on that bandwagon!  To me, the connection was there.  I even filed a vaccination injury report.  Nothing ever came from that.  Let me make this clear, the vaccines were not what caused the seizures!  Jack does get vaccinated now, took us a while to play catch-up.

After the second seizure, Jack started having very small seizures where his head would drop for a split second, this would occur in clusters of 100 or more at a time.  Imagine a crawling baby with his head already close to the floor & his head would just keep dropping forcefully over & over, or his arm would tremble for second but 100’s of times within an hour.  No answers were given other than epilepsy from Duke, Jack was started on Phenobarbital (a common seizure med) & no relief-if anything, the seizures were worse.  The seizures types varied, the length of the seizures got longer, more intense & more often.  I was a nervous wreck!  It pained me to hold my child who was constantly seizing.  I was scared, couldn’t eat, had no appetite.  I’m a tall girl, it was around that time I was beginning to look a little Olive Oyl-ish (you know Pop-Eye’s girlfriend).  So that I would not have to physically hold Jack & feel him having seizures, I would load the two boys in the car & ride for hours everyday.  I knew that him riding would put him to sleep which meant he probably wouldn’t have seizures while napping.  I’ve seen roads in our county & neighboring counties that most have never.

For 6 months, Jack had to suffer with seizure after seizure, countless ER visits, specialist appointments, MRI’s, CT scans, blood draws, EEG’s & boy were the EEG’s a mess!  Jack had the most beautiful, curly hair ever.  After having his first EEG, his hair was ruined-it had to be cut off to remove the glue…such a sad day.  By the age of 9 months, several seizure medications were added to his regimen & no relief was found, the medications did not even take the edge off the seizures.  Jack was diagnosed with medication resistant epilepsy.  There was one treatment that we did for Jack where I had to give him shots of steroids myself when he was 9 months old called ACTH.  This was done at home for a month with some relief but the seizures quickly started back once treatment was complete. During this time, friendships were lost, endless plans canceled, going out with my husband came to a complete stop, & the phone stopped ringing except by a few family members calling to check on things. I became a mother who literally was running on fumes, sleeping with one eye open & one eye closed.

My aunt Sue, who has now passed away was watching a movie featuring Meryl Streep called First Do No Harm (true story btw).  This movie is about a mother whose child was having countless seizures like Jack.  Medications were not helping her child, she looked for alternatives & found a possibility called the ketogenic diet.  Once the diet was implemented, the child’s seizures lessened.  Sue told me about this “miracle” so I decided to investigate.  Duke did not have a ketogenic dietician at that time, so just after Jack’s 1st birthday in August of 2002, we were admitted to Carolinas Medical Center (CMC) in Charlotte.  All of Jack’s neurology care had to be taken over by the folks in Charlotte.  The diet is not typically used as a treatment for epilepsy because it is extremely hard to follow, has to be under a doctor’s care & a dietician, even shampoo, toothpaste, anything applied to the skin has to be looked at carefully to make sure there are no sugars.  The diet is 90% fat, think of the Atkins diet or what everyone is calling the keto diet now.  One of the big differences in those diets versus the ketogenic diet is all of Jack’s food had to weighed out in grams, very small grams & he had set times he had to eat.  He was allowed three meals & two snacks everyday.  During Jack’s week long admittance to the epilepsy ward at CMC, my husband & I stayed all day everyday learning the fundamentals of the diet.  The diet was gross!  One meal example would be 10 grams of mayonnaise, 5 grams of canned chicken, 5 grams of green beans.  I think the reason we were so successful with the diet is because Jack went from breast milk to the diet.  He wasn’t privy to the world of cakes, ice cream & candy. Meals had to be planned in advance. If we went to a restaurant, we packed a cooler with Jack’s meal & Diet Sprite. He never cried about his food, was extremely accepting.

During Jack’s run on the diet, the boys & I & my parents went on a vacation to the beach. Lee stayed behind because he had chickens. I went down not feeling 100%, something was just off. Well, I discovered I forgot Jack’s gram scale to weigh his food. We live 2 hours from the beach, so Lee drove down (bless his heart), spent the night & left to go back home. The day he left, I had to go to the ER due to the pain from what was determined to be food poisoning. The pills the ER doctor gave me, made me even worse & the pain was unbearable. That same night, I went back to a different ER. I went in my pajamas & robe & smelled like crap! While there, my daddy got to talking to someone in the lobby (like most Southern men do) about me. She told him I probably had a parasite from drinking bottled water, I was starting to get scared because I lived on bottled water! Thankfully, a parasite had not invaded my body but rather bad Chinese food! I got best thing ever made-morphine & a bag of fluids.

Lee had to come back to the beach the next day to take me home. He was tired of driving to the beach to see about my crazy self & was taking me home where I belonged! We laugh about this story so much. I ruined everyone’s vacation & Lee came to the beach twice & never even got to see the ocean!

Getting back to the story…thankfully, my parents once again stepped in to save the week with watching Coleman while we were confined to the hospital room learning something that would give us a break from a horrific time in our lives.  Coleman was just a little man, a little over two.  We were so consumed with caring for his brother for a solid year, but there was absolutely nothing we could do to prevent that.  We are just truly thankful we have people in our lives that are able to support us especially during times like those.

The good news is the diet was our miracle for a few years.  The moment Jack went into ketosis (when your body produces ketones), his seizures stopped!  What a true blessing, our prayers were answered!  For 2 1/2years, Jack did not have any seizures.  He met all of his milestones & developed normally.

Stay tuned for part 2 of the Young & the Rest-less (both of those words are correct)!  Rest-less we became & still are.

The boys before the storm, Christmas 2001. Coleman on top, Jack being wrestled by Coleman!

Author: dravetsyndromeblog

44 year old Mama of three kids, wife of a farmer, & business owner. View all posts by dravetsyndromeblog