New Seizures=More Tests

Everything is crazy around here! Sierra has developed two new seizure types in the last year. She now has tonic clonic (grand mal) and drop (myoclonic) seizures. We were able to get a neuro-psych evaluation done, a genetic panel, and finally meet with an epilepsy specialist. Not only does Sierra have epilepsy, but she also has ADHD, ODD (oppositional defiance disorder), and Sensory Integration and Processing Disorder. ODD basically is attached to ADHD and makes her have major issues with authority; it also makes things very interesting!

The new specialist that we are seeing believes that it is possible Sierra has intractable epilepsy. This means that the seizures can’t be fully controlled by medicine. We have luckily been able to keep her on the same medication this last year, but we are constantly having to change the dosage or add/subtract additional medication. In the last year and a half we have changed the dosage 5 times, added other medications, and then taken them away. The problem is that she has barely grown in that time, in fact she has been losing weight in the last 6 months, so the changes weren’t due to her outgrowing the dosage.

We have new tests coming up this month!  In fact she has a 3-day Video EEG next week and a sedated MRI in two weeks. After the results will be a new medicine change. We have only done the 24-hr Video EEG and have never done the MRI so this will be new for us. I am lucky that Sierra is a trouper when it comes to doctor visits and hospital stays!

TIPS for EEG Hospital Stays!

• Palmolive with Oxy dish soap *
• Hair conditioner *
• Fine-tooth comb *
• Button-up top
• Pajama pants
• Slippers or no-slip socks
• Books/Movies/Crayons and Coloring Books/iPad or tablet
• Snacks
• Clothes to go home

*For getting the EEG glue out of the hair!

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 ❤