Alex can no longer express himself, and nobody can figure out why. Last March, he suddenly began having seizures in the night. Twice he was admitted to the ER. The doctors couldn’t find anything wrong and sent him home. The seizures didn’t stop. On his third visit to the ER within one week, Alex experienced a grand mal seizure.
“Then the doctors paid attention,” says his grandmother, Martha Harrison. “But still, they found nothing.”
Medications lessened the severity of the seizures but Alex began to lose motor control. He showed signs of weakness in his right arm and hand. During the summer, his grandparents noticed further decline, yet MRIs, EEGS, blood work, and a battery of other tests showed nothing out of the norm. There were no tumors, no lesions on his brain, no discernible brain injury at all.
By November, Alex began to exhibit problems with the left side of his body. His seizures, his grandmother says, are atypical. They happen when he is entering the lightest state of sleep. One night, he experienced thirty-seven seizures within two hours. When he reaches a deep sleep, however, the seizures seem to stop. They begin again when he is waking up, but it is rare for him to have one when he is fully awake.
A week and a half ago, little Alex spent three days at Primary Children’s Hospital undergoing many of the same tests he has had before. Even when needles were inserted into his muscles during testing, he was subdued and did not utter a single cry. Again, all the tests came back showing the same result: normal.
“He’s the most normal abnormal boy there is,” his grandmother says.
As Alex sits placidly on her lap she brushes a lock of his blond hair from his forehead and explains that the muscles in his face have been slack for months, he hasn’t been able to smile and has no expression. The new meds he is now on have helped some things. For instance, since last Friday, he can reach out his arms to be held and clasp your hand. He couldn’t do that before. He also has a chuckle that can show he’s happy, but it also shows discomfort.
While the new medications appear to be helping some parts of his brain there are also new concerns, neurological signs that are strange. His hands fly around suddenly and his mouth hangs open.
Alex now lags a year behind in his development. He cannot talk—save for a determined but weak “Hi!” He knows the song I am a Child of God. Amazingly, he can carry a small bit of the tune and his sounds mimic the words. His blue eyes glimmer with resolve, then he finds he can’t finish and resolutely shakes his head. His symptoms don’t fit any kind of mold. There were problems with his birth but they didn’t seem to hamper his early development. In fact, developmentally, he was right on track with his twin—a sister named Jessica—and sometimes ahead of her, until the seizures began.
For now, the family is taking things one day at a time, all they can do is watch and wait. Unfortunately, the doctors can only do the same. His grandmother says there is a family member studying to become a pediatric neurologist. Alex’s medical history and test results are being compiled and will be sent in hopes the mystery of his seizures can be unraveled.
“Hopefully someone can put everything together and identify some sort of syndrome, something that would make sense,” his grandmother says.
That's what she's praying for.
Until then, Alex’s family fears the impact the seizures are having on his tiny body. They have been told by doctors that only seizures over four minutes can cause damage. But Alex has never had a seizures that lasted that long, yet everyone can see his decline. He can’t be weaned off of his medication because his seizures become too severe.
“We could deal with the seizures,” his grandmother says, “but it’s hard to watch him deteriorate like this.”