My preemie twin was diagnosed with juvenile myoclonic epilepsy
Posted by kim on March 23, 2011
I thought my “preemie twins” were done giving me death scares. I thought wrong.
Mallory has been sick for over a month now with classic medical symptoms: headache, stomachache, sore throat. She was originally diagnosed with a sinus infection, but antibiotics didn’t help at all. She also said she felt like she was “blacking out” – my interpretation of “blacking out” was getting up really fast and getting that woozy feeling, which made sense since she was weak from being sick.
All medical tests had came back normal; she was negative for strep throat, mono, influenza, CSV, even carbon monoxide poisoning (that freaked me out, so I bought all kinds of testers for the house). She looked extremely pale, but all bloodwork was normal, so she wasn’t anemic. They finally did an MRI which showed “inflammation on the brain” which they wrote off as a nasty virus.
When Tatym, her younger sister, started to have the same headache/stomachache/sore throat symptoms, even both girls having a tender spleen and left ear pain, we figured it really was a contagious virus, and it would just have to run its course.
Tatym only missed a couple days of school, but Mallory had already missed three plus weeks of school. She actually seemed somewhat better last weekend, so when she was bawling that she didn’t want to go to school on Monday, Macy (her twin sister) and I chided her that she couldn’t miss any more days of school! Then during breakfast, her whole body “twitched” and Macy and I gave each other that “what the hell just happened” look.
Here, Mallory was calling those twitching episodes “black outs”. I knew the doctor’s office wouldn’t be open until eight, so I hopped into the shower. In the meantime, Mallory had another episode, causing her to drop her “fake baby” (she is taking a Child Development class and gave her baby a head violation in the process). We dropped the baby off at “daycare” aka school and headed to the doctor’s office.
Mallory had a few more twitches on the way there, and I jokingly asked if I needed to hold her hand to walk to the office. And within a second, Mallory was no longer beside me, but on the cement having full-blown convulsions in a pool of blood. I panicked. I couldn’t stop her or hold her still. No one was around to yell for help. I ran to the doctor’s office to send help.
Luckily a local businessman came to our rescue and used his coat to pad her head from getting any more damage. My daughter was having a massive seizure and there was nothing I could do to help her. But the scariest part was when she stopped convulsing and went limp. She was gray and lifeless, and I seriously thought she was dead.
–that feeling makes me cry every time I think about it, so I need to take a break in continuing writing–
When rescue arrived, I was happy that Mallory finally opened her eyes, but worried when she was in a fog and not responsive to me. My mom drove me to follow the ambulance to the emergency room. More bloodwork and a CT scan were all normal. So what was wrong with her?!
Mallory must have originally landed on the left side of her forehead as she has a huge bump there. The fall broke her prescription eyeglasses cutting her right eye requiring stitches to close the huge gap.
After the neurologist reviewed Mallory’s history and EEG, he diagnosed her with juvenile myoclonic epilepsy (JME), and that combined with the virus that she has been fighting the last few weeks just exacerbated each other. She had all the classic symptoms of JME: febrile seizures as a infant, staring into space as a toddler, muscle spasms the last couple of years (which we were writing off as charlie horses). JME full blown seizures typically begin at ages 13-15. Since Mallory was a preemie and still is developmentally delayed, that makes sense that hers waited until she was 17.
Indications of a full blown seizure coming on are extreme mood swing (she was bawling uncontrollably) and “twitches” which are more likely to occur in the morning. Bingo. The neurologist put her on Keppra XR, sent her home, and said to come back in a month.
After doing research (aka google) and talking with our pastor (whose wife has epilepsy) and some good friends who know A LOT about epilepsy, I made an appointment for Mallory to see Dr. Madhavan who specializes in epilepsy.
A lot of Mallory’s history is starting to make sense to me now. For instance JME affects your short term memory and ability to learn. I had always wondered why Macy excelled above Mallory at everything when Macy was the sicker baby of the two by far. I now have hope that once Mallory is properly treated, we will see a significant improvement!
Thanks to everyone for all the prayers and concerns – your friendships are appreciated more than you know!
I tried every brand of disposable diapers and even tried cloth diapers as poor Macy’s tiny little butt would bleed, irritated from all the action. I also tried every kind of diaper rash cream that I could find on the store shelves, including 
