My daughter Ella was born at 37 weeks, with a normal health history
and with nothing remarkable showing up in our family tree.  She was
hitting all of her developmental milestones, she didn’t have issues
with ear infections, and she was generally a very healthy child.  One
day in February of 2001, she took four naps, and that was my first
indication that something was not right.

Ella had her first seizure, not related to infection or fever at 14
months old. It was a simple partial with secondary generalization type
seizure, all over her body but twitchy, not flailing. She had an MRI
and an EEG and the tests came back as normal. One thing that was noted
was that her bicarbonate level in her kidneys was dangerously low at
the same time, 19, when normally it should be much closer to 23-24.
During that week, her pediatrician was running tests, checking for
information on Renal Tubular Acidosis, all sorts of things. At the
time, we didn’t know that a seizure can make readings from anywhere in
the body be haywire for a while.  Exactly one week after the first
seizure, Ella had two grand mal seizures in a row one evening. The
first was three minutes long, followed by another about 10 minutes
later that lasted over a minute.  At the ER later that evening, she
had another simple partial seizure with secondary generalization.
After that third seizure in one evening, Grace was transferred to
Vanderbilt Children’s Hospital in Nashville. She was given another EEG
the following afternoon, which showed no seizure activity. The doctors
we saw put her on phenobarbitol for a year. She had no seizures during
that year, and none for 2 years after coming off the phenobarbitol.

In March of 2004, Ella had 4 myoclonic seizures in a row, lasting
approximately 10 seconds each, back to back one evening. She had never
had this type before, but because of the torso lurching forward
leading with one shoulder and the quick and rhythmic kicking of her
legs, I was pretty sure it was a seizure. She was seen at Raleigh
Neurology and given a sleep deprived EEG, which showed no seizure
activity. In April, she had a 4 minute long simple partial with
secondary generalization. Her typical behaviour during one of these is
to go completely stiff, arms curled inward and twitching, eyes staring
into space, mouth chewing, and with hitched breathing. She cannot
speak for about 30 minutes after a seizure, and fades in and out of
consciousness during those 30 minutes. She was given an MRI and a 24
hour video EEG in May of that year. The EEG revealed a slow normal
alpha variant in her frontal lobe, and the MRI revealed that she had a
low normal amount of myelin. She was 4 yrs 5 months at the time of the
MRI and her level of myelination was appropriate for a child of 2 1/2.
Her doctor mentioned nothing about altered diet, supplements, or
anything, and told us that she might just be a slow myelinator. He
said we’d do another MRI and EEG in 6 months to see if there was a
change.

In July and August, Ella had one complex partial seizure per month.
They were characterized by being unsteady on her feet, compulsive
tactile stimulation (once it was wringing her hands, the second time
it was twisting her hair on her left side with both hands). Her speech
was labored and garbled as well. I reported both of these to her
neurologist, who noted them in his file.

Ella had a 48 hour ambulatory EEG in November which came back normal,
and another MRI. The neurologist said “there has been no change in her
MRI”. I assumed this to mean that she did not have a proportionally
increased amount of myelin for being six months older, rather that
that amount of myelin has not changed at all. He was not very
forthcoming with information, and I really did not know the right
questions to ask. I asked if there were any supplements she could
take, and he mentioned giving her an omega-3 supplement. He did say
this, which was confusing to me, “she has a hyperintensity of
periventricular white matter.” He also mentioned that she had
appropriate water in her brain where the myelin ought to be and
mentioned something about spaces but he didn’t go into detail about
any of it. I was too overwhelmed to ask any meaningful questions, and
what I did squeak out it was like pulling teeth to get answers. He
explained that myelin displaces water as more myelin forms in the
brain, and until then, there is water where myelin should be.

I left the office disheartened that there was not an increase in
myelin, and scared that he just looked at her and said that she was a
mystery and that he was sure that the lack of myelin and seizures
together were a non specific symptom of some larger issue, but with
her EEG and MRI being normal except for those two issues, there was
really nothing else he could draw from them. He wants another MRI done
in a year, and that was pretty much it. I envisioned her file sitting
in the drawer until that next fall and him not thinking another thing
about it.

When Ella was 6, she had some testing done relative to her
myelination, but we have never gotten any answers about her seizures
relating to her lack of proper myelination. There is very little
available online concerning myelination, so my personal researching on
the topic has been limited. There is certainly more professional
research that needs to be done about the correlation. I am happy to
report that Ella has been seizure free without medication for six
years now, and should they recur, I will continue to push and
advocate for more information.