Kepp-RAGE and Emotional Breakdowns

Sierra has been on Keppra (aka KeppRage) since her diagnosis. We have had sleepless nights, anger, and full-on war temper tantrums. These are well-known side effects of the Keppra but the Dr. insisted that this was the medicine to start with because of her high risk for the tonic clonic, or grand mal, seizures. We really tried to deal with it, but after 4 weeks enough was enough! The medicine wasn’t stopping the seizures and was causing more problems than I could handle. All three of us were ready to pull our hair out.

The Dr. has now prescribed Zarontin, so we are now slowly adding the new medicine and will be reducing the Keppra on Friday to half-dose. We still have 10 more days until she is off the Keppra and on full-dose Zarontin. This means that we are unfortunately dealing with the side effects of two medications, not just one. Which leads me to today.

Sierra has recently become aware of the cartoon Pokemon. It has almost become an addiction for her because that is all she ever wants to watch anymore. Thanks Netflix 😦 lol. Well, today she was watching an episode that could be considered sad if you had been paying attention since the beginning. Butterfree (a type of butterfly) had been caught by Ash (main character) as a Caterpie (caterpillar) and had now transformed twice, much like a caterpillar would in the real world. Well this episode had Butterfree leaving Ash to find a mate and start a family. Sierra started bawling! I mean full-on gut wrenching sobs that broke my heart. I asked her what was wrong and her reply was “I don’t want Butterfree to leave!”

I tried to explain that Caterpie was similar to a baby, Metapod was like the teenager, and Butterfree would be considered an adult. I told her that she would grow up to be an adult one day and would leave to get married and start a family. This only made her cry harder! She climbed up into my lap and told me that she didn’t want to be an adult and that she never wanted to leave. She had a complete emotional breakdown and all I could do was hold my baby girl.

She passed out for a nap not long after this. Her little body just wore out from being so upset. She had already had two seizures earlier in the day and then this episode. I wish I could take it away and just let her be a happy little girl 😦

Advertisements

Diagnosis and the First Month

May 14,2014. It’s amazing how a day gets stuck in your brain. The date, what you did that day, how you were feeling, possibly even what you were wearing, is stuck on rotation in the mind. However, what a doctor tells you is lost in translation after the dreaded diagnosis: Epilepsy. Nothing else the doctor was telling me was sinking in, the word epilepsy was on a loop like an old-fashioned record that is stuck.

A mother knows when something is wrong with her child. Call it intuition or just being around 24/7. When Sierra started behaving strangely and having more potty accidents than ever I just knew something was not right. She wasn’t sleeping through the night anymore and was acting up in her preschool. My polite, well-mannered little girl was getting into fights and talking back to her teacher. I’ll be honest, I got really scared. Getting up the nerve to take Sierra to the doctor took a lot of effort. I was in denial and I didn’t want to know. I pretended that I  was just being overprotective and it was just my daughter having an overactive imagination causing her symptoms. Her pediatrician was willing to listen and decided that Sierra should get looked at by a pediatric neurologist. What she didn’t say was that would be the most agonizing 6 weeks for a terrified mom.

During Sierra’s first neurologist appointment, she had one of her “spells” (for a lack of a better term). She was supposed to touch Doctor R.’s index finger and then touch her nose. She touched his finger and went to touch her nose but in mid-motion she stopped and put her hand down and started looking around with really knowing what she was doing. Doctor R. called it Transient Alternate Awareness. He ordered an EEG and an overnight sleep study (which is not fun with a small child because it’s hard to settle them down). It took 3 more weeks to get the results and then another week waiting on pins and needles knowing that the results were “abnormal”.

Primary Generalized Epilepsy. It means that instead of just part of the brain causing the seizures, the entire brain misfires. Sierra has absence seizures – meaning that her brain checks out for a few seconds. It can cause her to stand still and her eyes flutter a little, wandering without realizing it, slurred speech, and disrupted sleep. In her case, it is more than likely genetic from her bio-dad. Did I mention our daughter is adopted? We were unaware of the possibility of it being genetic until I called my sister, who happens to be Sierra’s bio-mom.

These last few weeks have taken its toll on the family. We have been discussing care plans, home-schooling, babysitters, me going back to work, medicines and side effects. Right now she is on 1.5mg dose of Keppra but she still has quite a few break through seizures and her mood swings are terrible. We still have another 3 weeks before her next doctor’s appointment. I am just thankful that we have such a good support system in all this because I am still scared silly. Sierra, on the other hand is taking everything that gets thrown at her like a champion. She is my hero in this ❤

Absence Seizure Facts

Absence Seizure Facts

Not every person who has epilepsy has convulsions.