>Around 8 months of age, Emily began to have strange episodes. They always happened while she was in her carseat. She would stiffen, turn her head completely to one side, tilt her face and eyes upwards, and open her mouth in a silent scream. Her lips would turn bluish, and she almost looked like she was choking, but these episodes never happened while she was eating. They were also very brief, lasting no more than 15-20seconds. I can remember 3 distinct episodes–The first when Emily was 8 months old. She was in her baby carrier at home, but I cannot remember if we were preparing to go out or had just gotten home. The next one I remember was right when we got into a hotel room after a long drive, again she was in her baby carrier. The third one happened in October 2006. We had just pulled into our driveway after a 20-30 minute car trip. This one was the longest episode, but it was the last episode like this that we saw.
(This next part was written by my husband, Jason.)
At 2 years old we started the process of trying to get her into early intervention pre-school. Her older brother and sister had done the same thing secondary to their speech, language, and motor delay. Emma seemed to be slightly ahead of where here siblings were at their age, but she still lagged behind other kids. It took us a couple of months to get things ok’d by the school. She spent a year in the early on program. This consisted of 1 morning/week in a preschool setting and 1 day/week of home visit. This was pretty much hit-or-miss for Emma. Some days she did great, but more often than not she would spend the time screaming and throwing fits. Her communication skills at this point were very limited. We would walk to the pantry when she wanted a snack and we would point to various things, she would scream if this was not what she wanted and then we’d figure it out by trial and error; or we would lift her up to the pantry and she would point out what she wanted. It was at this time that she was diagnosed with mild autism. Over the next 6 months she would start to develop her communication skills and things got a lot better. In fact, everyone now agrees that she is not autistic.
In August 2008, she had what we think was a seizure. We were on our way to North Carolina for vacation. We looked back in the car and it appeared she was leaned forward drooling. Fran told her “No spitting” and lifted her head. Her eyes were open, but no one was home so to speak. She let go of her head and it dropped back down. I tried to wake her by calling her name as Fran took her out of her seat. She came back around after a few minutes. She acted confused and scared. She asked “What happened?” It took about 30 minutes until she started to act normal again and was her normal self. The rest of the week she was fine. On the way back from (one week later) and again in the car, she had a staring spell where she was speaking and seemed to get stuck for a few seconds. A week or two later she had another big event similiar to the first (again in the car). We made an appointment with a local neurologist. He ordered an MRI (which was essentially negative). She had another smaller episode (again in the car) a week or two later. We started her on anti-seizure medicine at that time. Looking back after learning about her seizures we wondered how long could this have been going on? When she was 2 or 3 she would have days where she would wake up in the morning and her entire bed was soaked – and I mean soaked. She was wearing a diaper to bed, but this did not help. It was a wonder she could hold in that much to wet her bed. We figured we were just giving her too much to drink before bed time. Now we wondered if this was possibly seizure related. Maybe, but hard to tell for sure. She hasn’t done it since then. Sure every now and again she’ll have an accident, but very rarely are they bed soaking. She would also have days where she would scream and be inconsolable in the morning. Sometimes this coincided with a bad day at school as well, other times it didn’t. It was a tough time.
We started her on seizure meds as I previously stated. She tried various combinations, but her symptoms never seemed controlled. She rarely had the episodes in the car anymore, but she still had speech slurring and staring spells. We tried increasing the dose, adding meds, and tried other meds, but nothing seemed to help. Finally, in the summer of 2009 we were referred to the local children’s hospital for possible surgical evaluation. We had a PET scan which showed right sided slowing (the so-called perfect surgical candidate). All we needed now was a video EEG showing right sided seizures and would could procede with a right temporal lobe resection. A week in the hospital and 2-3 months later she would be back to her normal self. Hopefully, no more seizures.
During that summer she continued to have occasional speech slurring. She also started having some other strange things happen. Some days one side of her face was weaker than the other. It was variable in how severe or how long it lasted. It would come and go and affected either side (there was no real rhyme or reason to it). She started to curl up one of her arms, usually the right one. Also, she would have days where her posture was “off”. It almost looked like she had scoliosis because she would lean to one side and lean over to compensate. Looking back now, we know she had weakness on one side of her body. This too would vary in severity and duration and affected either side. We were told this was Todd’s paralysis. Later the neurologist blamed her medicine and lowered the dose with no real change.
The fun was just starting at that point. She had two video EEGs lasting a total of 7 days. Most of that time was off of all of her medicine. She didn’t have anything happen on those visits. In fact, she had some of the better days she’s had over the preceding months. This led the neurologists to conclude that she wasn’t having seizures at all and migraines must be to blame. She is now almost off her seizure medicine (tomorrow is her last dose). She still has occasional eye twitching, one sided weakness (face and/or body with no pridilection of side), and speech slurring. It’s sort of ironic that the very things we kept increasing and changing meds over (because the docs thought they were breakthrough seizures) are still going on but no one seems to have any solid answers. We hope she’ll outgrow all of the strangeness, but no one really knows for sure. We’ve tried her on migraine prevetives but this has not seemed to help either. When we ask her neurologists what should we do we pretty much get the run around. Keep her on meds? Sure, why not. Take her off meds? Sure, why not. Are these seizures? No, or I don’t know. Should we keep her on seizure meds? Sure, but is she having seizures? Anyway, it’s been pretty frustrating. I don’t expect them to have all of the answers, but a little more guidance would be nice. I feel like Emma is a challenging problem that no one knows the answer to and they no longer care to figure out what to do. So try this – why not, try that – why not. Just a sort of passive-aggressive leave me alone stance. Now we’re left to try to make sense of it all. I think we could call her doctors tomorrow and say “we took her off all of her meds” and they’d just “oh, ok good. Let me know how it goes.” It’s frustrating and very discouraging.
(It’s me, Fran, again.)
Since August, Emily has been having painful migraines. Three of them have happened in her sleep. She wakes up enough to whimper in pain, but mainly stays asleep. I thank God that these are short. She also had a handful of them during the day. If I can get her to nap, they go away quickly. She wakes up hyper and somewhat aggressive, but essentially pain free. Sometimes she will have the facial weakness with them, sometimes not. Sometimes her speech is slurred, and at other times it is garbled. She now has difficulty using words at times–for example, if she is trying to say “kitchen” it comes out “chicken” or if she is trying to say “disk” it comes out “stick.”
She was having short periods of time when her speech was fantastic. She would use complex sentence structures and appropriate pronouns and speak clearly. The last time she had such good speech was October 24. I know that good speech ability is in there, I just wish we knew how to get it back out. Emily was also having periods of aggression that went along with the headaches, speech issues, and weakness. Thankfully, it has been almost a month since we have seen any serious aggression.
Most days, despite what is going on, Emily is engaging and happy.