DJ’S STORY (told by his mom, Thelma)
Our story is one of fear, devastation, frustration, hope and celebration. The following is a synopsis of DJ’s story.
On September 30th, 2003 DJ was playing dinosaurs on the bedroom floor. He was 3 ½ years old, healthy and developing normally. Suddenly, his eyes rolled back and he stopped breathing. I was told at the hospital that he had had a partial complex seizure. By the end of October 2003, he had had three more of this type of seizure and was put on Tegretol.
These seizures continued and by Thanksgiving he was also having atonic seizures or “drop attacks.” DJ began falling all the time and had to get 8 stitches in his chin on two separate occasions. The doctors continued to increase the dosage of his medication; but after a brief honeymoon period of a few days without seizures, the seizures would come back, and be worse than they were before. By December he was having 10 to 15 atonic seizures a day.
On December 29th DJ entered the hospital for an overnight EEG. He had more than 50 seizures while there, including eye flutters, stares, and head drops. The doctors decided Tegretol was the wrong type of medication for DJ and prescribed Topamax.
The first dose of Topamax was given at 6:00 p.m. on December 29th. By midnight, DJ did not know who I was; in fact he was terrified of me. A once very social little boy, he became terrified of his own brother, and all little kids. He had been completely potty trained but by February 2004 he was wearing diapers again. DJ became psychotic and had hallucinations. He would run around the house screaming, flipping on and off light switches, standing in front of the TV touching various objects to the screen, etc. He would even become violent, scratching at my face out of terror whenever he felt a seizure coming on. He now needed to wear a helmet to protect his head from his frequent falls. His seizures continued in spite of an ever increasing dose of Topamax. I stayed locked in my bedroom with DJ to keep him safe. He was tested by our school system and was found to have regressed to the developmental age of an 18 month old.
By April 2004 DJ was on several medications, taking a total of 21 pills a day. The seizures continued to increase. He was hospitalized once he began having seizures every four minutes. While in the hospital, he was put on yet another medicine, Depakote. He was sent home to be weaned off the Topamax. He was still having seizures about every 15 minutes.
Needless to say, as a family, we were devastated. My husband and I had read about the Ketogenic diet. We believed this diet was a treatment option for DJ. We were hopeful it would control his seizures without the horrendous side effects of the drugs.
On October 5th 2004, DJ had a peg tube (feeding tube surgically placed through his skin directly into his stomach) put in. He needed this tube as he would have a seizure every time I tried to give him his medicine. I would then have to dig the medicine out of his mouth so he wouldn’t choke. I never knew how much of his medicine he actually got, which made me a nervous wreck.
On May 24th DJ entered the Children’s Hospital in Columbus, Ohio to start the ketogenic diet. By July 2nd he was seizure free! The peg tube has been a real blessing as it allows me to give DJ most of the fat in his diet (I use olive oil) directly through the tube, along with his medicine.
He has only had three break through seizures since then. The first one being on July 5th, due to suntan lotion that contained sorbitol. The sorbitol, a sugar alcohol, was absorbed through his skin. The next two seizures were due to food mistakes, (a little girl gave him a piece of candy on the school bus, and one day he grabbed a pork chop bone that had been marinated in Italian dressing and had sucked it clean, before we could get it away from him). Italian dressing has a high amount of corn syrup and sugar in it.
I believe the ketogenic diet is very “doable” with just a little imagination and commitment. It has given us hope for a brighter future!
DJ is now five and is developing normally once again. He has some catching up to do, but has made enormous progress both cognitively and behaviorally. He does remain on Depakote, but I attribute the tremendous seizure control to prayer and the Ketogenic diet.
Although epilepsy is a part of our family, it no longer controls us. Now, each day is a celebration!