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Jun 12, 2018
Kayla was diagnosed with Epilepsy at age 4. Little did we know the journey we were about to embark on. Kayla's still not seizure free. In Nov of 2009 she slipped into a deep psychosis and has not returned to us 100%. We know God has been watching over her. Perhaps her brain is resting while He works on healing her so she can emerge as the bright little girl she used to be.
When Kayla was 3 she would repeat a phrase saying “I have to go potty". She’d be confused & unable to find the bathroom. We had no way of knowing it was a seizure. She was diagnosed with Epilepsy in 2001 at the age of 4. The type of seizure she had was Complex Partial. She would repeat a phrase while doing something automated. We were told she’d outgrow them in 2 years. The cause was unknown but pointed to birth. With pre-eclampsia she was 5 weeks early, stuck in the birth canal with oxygen lost. She was extracted with a vacuum device on her head. She stopped breathing so she stayed in the hospital for a week. Little did we know the journey we were about to embark on. Kayla is almost 14 now & has had seizures over 10 years. We started out on a drug called Tegretol; the most common. She was on it for 2 years, but never seizure free. We moved on to Depakote which caused anger/aggression. This was the first time we saw another side to our delightful, loving little girl. Next we tried Topamax. She was having better seizure control, but started losing her ability to complete her thoughts & sentences. This was hard, as she had the vocabulary of an adult. In Sept ‘03, she woke up one morning unable to speak. We thought she had a stroke and rushed her to Children’s & learned a new word that day; Postictal Seizure/Status. She was in a seizure throughout the night & never came out of it, like a record that skips. She would experience this frequently in the future. We tried Trileptal next, only her seizures worsened; 4 or 5 five a day. Our Neuro suggested we check into the MN Epilepsy Group to determine if she was a candidate for brain resectioning. They would pinpoint the area on the brain where the seizures are & remove it. Very invasive. After a week of MRI/EEG’s they determined she was misfiring from both sides of her brain randomly & simultaneously, so she was not a candidate. We were somewhat relieved. They added a drug called Lamictal. Now she was on 2 meds instead of 1. Our neuro said he had run out of ideas & recommended we see someone else. The new Neuro reviewed her case, saw had us drop the 2 drugs for 1 called Carbatrol. We didn’t know this family of drugs can exacerbate seizures. That’s what happened. She would have a complex partial & it would turn into a generalized, Gran Mal. She started experiencing more episodes of rage/behavior problems. She was diagnosed with TLE or Temporal Lobe Epilepsy. This area of the brain houses behavior & emotions, which can come out negatively. The rage episodes were some type of seizure. We tried many new drugs. In ‘05 we went to the Mayo Clinic. We were grateful to be there & had high hopes. They warned us that we were there to “have” seizures. The more she had, the more they could learn. She had her first Gran Mal seizure where she turned blue & stopped breathing. She experienced some arrhythmia with her heart so they put her at risk for SUDEP (Sudden Unexpected Death in Epilepsy) They agreed that surgery was not an option and sent us home on Dilantin & Diastat to be used with every seizure. Over the past few years we have tried over 37 meds. Along with the seizures, she has behavior, rage, depression & high levels of OCD over dying. She has had multiple MRI’s which continue to show her brain free from any tumors or growths. The EEG’s come back showing misfiring all over the brain & some in her right frontal lobe. That means it’s electrical. We finally tried The Ketogenic Diet for 1 year. It was extremely difficult allowing 10 carbs a day, no sugar & high fat, drinking whip cream & eating bacon. The diet improved Kayla’s health, but we weren't lucky enough to have her gain seizure control. In Nov ‘08 we checked into Children’s to remove her meds again. We got down to Zonegran & Valium. We went 28 days without a seizure. This was a miracle. Then we had to give up the valium because it made her angry & disinhibited. Our next Neuro added more meds until Kayla was once again in a drug induced encephalopathy. On November 20, 2009 the unthinkable happened. Kayla slipped into a catatonic state of Psychosis & Delirium. She was admitted to the MN Epilepsy Group again on Nov 30 to remove drugs. After 2 weeks, she was transferred to the Fairview Riverside Psych Ward, where we were told they could do nothing for her mentally until she was on fewer meds & better seizure control. Now we are at home with Kayla awaiting her healing.