March 7, 2016 at 4:44 p.m.
Paint the town purple
Local family raises awareness for epilepsy, Purple Day
Paint the town purple
By Kayla Thomason-
Lynne Wakely's son, Eli, is 20 years old and has been dealing with five types of seizures, drop seizures, absence (staring), tonic (stiffening of arms and legs), myoclonic (sudden head jolts), and tonic-clonic (whole body jolting, used to be called grand mal).
Eli was 2 1/2 years old when he was diagnosed with epilepsy.
"I heard gurgling coming from his crib," Wakely said, detailing the first time she witnessed his seizures. "When I picked him up it looked as though his body was jolting. I was so scared and had no idea what was wrong."
The seizure stopped and they took him to the hospital where the family was told Eli had had a seizure.
The news shocked the family.
A week passed incident free, and then he had another tonic-clonic seizure that lasted 10 minutes which, for the family, felt like a lifetime.
Eli was then diagnosed as epileptic and put on phenobarbital, which caused him to have drop seizures.
"He had to wear a helmet so he wouldn't injure himself," Wakely said. "He could hardly function on this medication, so we went to see a pediatric neurologist."
This doctor prescribed Depakote Sprinkles, which Eli remained on for three years, two of which were gloriously seizure free.
Having gone that long without seizures, Eli's doctor felt he had outgrown them and was slowly weaned him off his medication.
It didn't last. A year later in July 2002, at a swimming lesson a tonic-clonic seizure came back with a vengeance. It happened just before Eli was about to go into the pool.
It was the last time he would be seizure-free for a year.
Eli went to the hospital and was put back on Depakote, but the dose wasn't strong enough. He continued to have seizures into the evening and had to be airlifted to Saint Joseph's Hospital in Marshfield, in order to get them under control.
Over the next few months Eli and his family had to make several trips to Saint Joseph's to get his seizures under control. Little did they know the epilepsy would be a blessing in disguise.
In October of 2002 the pediatric neurologist suggested the ketogenic diet - which is high in fat, protein-rich and low in carbohydrates. The Wakely's wanted more time to look into the diet before trying it, and the doctor suggested they get an ultrasound of Eli's kidneys to make sure they were free of kidney stones, as the diet can cause them. The Wakely's agreed to have the ultrasound.
The results weren't anything to be concerned about, even though Eli's left kidney's outlet was enlarged. The doctor wanted them to come back for a follow-up and get a Computerized axial tomography (CAT) scan.
The results from the scan sent shockwaves through the family. Eli had a cancerous tumor - a Wilms Tumor stage 1 - in his right kidney. His left kidney was fine.
"Eli's seizures brought us to Marshfield and without that we probably would not have caught this type of cancer in its early stages," she said.
Wakely added that this type of tumor is normally found in children 5 years of age and younger. Her son was nearly 7.
"My husband and I were in shock all the way home," she said, "but we had to gain our strength so we could tell Eli's 15-year-old sister, Kara, and his 9-year-old brother, Isaac, that their brother, at only age 6, had cancer."
In that same month Eli had surgery to remove his right kidney, followed by 18 weeks of chemotherapy. For the next five years he would have countless blood tests and ultrasounds to make sure the cancer didn't come back.
While undergoing chemotherapy, the ketogenic diet was out of the question because the chemotherapy would interfere with it.
In April of 2003 he finished the grueling chemotherapy.
Eli's seizures became progressively worse, and by November 2003, he had a hard time communicating due to the number of episodes he was having in a day. The Wakely's decided to give the diet a try.
"It is not an easy diet, but somehow we have managed to keep Eli on the diet for (14) years," she said.
Some children who have gone on the diet have eventually become seizure free or able to come off some of the medication. Unfortunately, Eli was not one of them, as he has a severe form of epilepsy known as Lennox Gastaut Syndrome.
"The diet has helped Eli to be able to function, but he still has to take three different seizure medications," Lynne Wakely said of her son's condition. "Even with the diet and his medications, Eli has anywhere from 10 to 30 seizures on a good night. Thirty to 70 on a bad night. And yet there are still many more that we don't even physically see."
Although the epilepsy allowed the family to find Eli's cancer, they are searching for a way to ease the constant barrage of episodes.
"These seizures helped find his cancer," Wakely said. "Now we need something to stop this constant storm in his brain."
Eli is now 20 years old, and according to his mother, "He is an unbelievable young man who brings smiles to everyone around him."
No matter how many seizures Eli's family has seen, it is still heart-wrenching to see.
"We all just want Eli to have a chance at a better life," she said. "We need a cure before it is too late."
He is an uncle to four children, two of which are infants, and the other two are ages 4 and 5. The family has told the children about epilepsy, so that if they were to witness it they would have a little understanding of what is happening to their uncle.
"Because they have grown up with Eli, they are totally accepting of him," said Wakely. "He's like a big kid to them, but they know he has problems and they understand that it takes him a long time to process, so they always wait patiently for him to respond. I think the earlier kids are exposed to different needs, the more understanding and caring they will be."
The 4-year-old knew Eli had seizures, but hadn't witnessed them until this past month.
"We're trying to explain to her and it's not something to be afraid of, we want people to be aware of it so if somebody does have a seizure they can help that person in some way or just be supportive," Wakely said.
Eli is at the end of his options, new medications either don't work with the diet or he can't use them due to only having one kidney.
He has tried 10-12 different medications through his life.
Wakely and another parent have been raising awareness on epilepsy for three or four years by celebrating Purple Day at the schools.
Purple Day is always March 26, which falls on Saturday of Easter weekend/spring break this year.
Due to where the day falls during the students' break, Wakely will be dropping off purple ribbons for the entire school district the week prior.
"I thought that, even though they're not going to be in school I could still leave stuff for them the week before they go on vacation," she said.
Some area businesses will have ribbons available throughout the month.
"We just want the community involved," she said. "We're not looking for donations, donations are fine but that's not what we're looking for. We're just looking for the awareness, that's the big thing."
Ribbons will be located at A'la Mode Ice Cream and Coffee, Advanced Accounting & Tax Services, Trig's, Ripco Credit Union, Holiday Gas Station and the Northwoods River News. Ribbons are free and donations are appreciated.
Proceeds will go to the Epilepsy Foundation where they will use the money to send a child to camp and cover the cost of medication, among other things.
Kayla Breese may be reached at [email protected].
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