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We had recently moved to Queensland
with children, at the time aged 16, 14 and 12. My mother, who had been
afflicted with cancer for over two years was beginning to lose the
battle which necessitated many trips back to Victoria. In the midst of
this sadness, George our son, at 14 and a half began to have seizures.
During primary school, George’s eyes had often rolled upward. At the
time, this was interpreted as a nervous gesture but it now became
obvious that seizure activity was the cause. The first half a dozen
Tonic Clonic seizures we observed wrenched out his Dad’s and my
hearts, but we soon learnt to deal with them which was just as well as
many hundreds were to follow. Our eldest daughter was frightened by the
epilepsy and it caused her nightmares but the youngest was interested
and willing to help.
Phenytoin was first tried, then
Tegretol to which were later added Clobazam, Vigabatrin and finally
Lamotrigine. The seizures increased in frequency and intensity but also
sometimes changed in style depending on the combination of drugs in use.
For up to two days after a major
seizure/s George would be well and reasonably alert, thereafter
gradually losing his level of alertness and simultaneously experiencing
more eye rolling and blinking. This was probably eyelid myoclonus as,
after a year, George was eventually given the more specific diagnosis of
Juvenile Myoclonic Epilepsy of Jans. This eye movement would escalate
and build up to a major Tonic Clonic seizure usually around a week. Ten
days without a seizure would be exceptional. Often, multiple seizures
would result with five Tonic Clonics being the maximum experienced in a
day at home though seven occurred one day in hospital. Sometimes he
would wake the next day seizure free, while at other times the seizures
would continue through the following day as they did even for his very
last episode.
George missed out on many eagerly
anticipated activities, due to seizures which would happen anywhere:- at
school or on holidays, whether overseas in wintry New Zealand or
interstate in Albury/Wodonga, in public surroundings such as Brisbane
City Square, or at places connected with relaxation like Noosa or
Sanctuary Cove. Tonic Clonic seizures also occurred during favourite
activities such as drama, Tae Kwan Do, gym work-outs and during
relaxation exercises or at home, where a majority transpired in the
toilet area so that the door had to be re-hinged to swing outwards to
enable aid. Seizures also happened in hospital and also in the presence
of at least four doctors in private practice.
Most mornings the eyelids Myoclonus
were present and together George and I (and at weekends his dad) worked
at delaying the seizures through employing various concentration
strategies which included reading aloud, juggling and shooting baskets.
I could not seek employment for some years while George was so unstable.
The worst seizures turned his whole face blue. There was almost always a
build-up of seizure activity so that we knew when to watch him extra
closely and watch and listen for the crash. We hated the ones in the
shower in case he crashed through the screen and the one where he fell
while holding a glass was ghastly with his face cut and blood all over
the kitchen.
The final set of tonic clonic
seizures (6-7 March 1998) occurred while in a doctor’s surgery during
administration of IV Diazepam (Valium) given in an effort to stop
seizure activity which had begun the previous day with a Tonic Clonic
seizure. George had remained in a state of altered consciousness all day
with constant eye rolling which had not ceased by the next morning. The
second last episode was in the toilet on New Year’s day after a late
night. Although having learnt to manage without hospitalization, George
had to be taken in after that seizure which was so severe the whole
house reverberated. He bruised his face so badly that it was feared his
cheekbones and/or jawbones may be fractured. It seemed his nose was
broken yet again, but the end was in sight. His level of Vigabatrin had
been steadily dropped until after this seizure, he was able to be almost
freed from this drug. After the final set of seizures in March, 1998 he
was left only on a low dose of Lamotrigine and the Pyridoxine could work
unhindered, fixing the problem!
It turned out that George had a
clinical Pyridoxine deficiency (actually dependancy) which is a well
documented cause of seizures
It took three years for me to find a
doctor who was willing to conduct the simple blood test for this. As I
had studied Nutrition at an undergraduate level, I knew that a lack of
Vitamin B6 (or pyridoxine) can cause seizures, but the doctors thought
that you had to be born with a metabolic disorder in which case you
would have intractable seizures as a baby. However, on further
researching the matter I found that studies conducted during the sixties
had identified adolescents, especially boys, whose seizures also
responded to Pyridoxine treatment.
A wonderful GP agreed to order the
test which was returned marked as being indicative of deficiency. This
could easily be addressed once he was off most of the medication. George
was extremely sensitive to changes in dosage so that ¼ of a tablet of
Vigabatrin reduction would result in seizures the following day. It took
over a year to wean him off this. This was effected by shaving tiny
pieces from one tablet between seizures, building up to a reduction of
¼ of a tablet and so on. Weaning took a long time and the body did not
like giving up that to which it had become accustomed. As he was prone
to multiple seizures, we dared not risk a status attack by reducing the
medication too quickly.
Once he was off the Vigabatrin he
was free. The medication had exacerbated earlier seizure activity. The
times of him being ‘spaced out’, unable to concentrate and of
compromised functioning were over. In those final few months when he was
still on only Lamotrigine as well as the Pyridoxine, there was the
uncertainty of whether this drug might be what was controlling the
seizures. But it wasn’t that, as he has now been off all Anti
Epileptic drugs (AEDs) for sixteen (16) months and seizure free for
almost two (2) years (23 months). Previously he couldn’t go 16 days
without a seizure. He had a clinical deficiency which once addressed
nullified the problem.
My husband, after an initial
adjustment has been an incredible support and thus eventually, with a
support network in place and mobile phones for continuing contact with
George, I did return to part-time work, being lucky enough to find some
employment in educational research which allowed me very flexible hours.
George is now beginning a new life.
He was cleared to be able to use electrical power equipment so could
commence a pre-vocational course in cabinet-making. The neurologist
warned against long hours but to reach the TAFE, George had to rise at
5.30am (which he just could not have managed previously) to leave home
at 6.30am to catch a train to Yeronga. He would get home at 6.30pm and
then have to face homework but he managed without a problem. He is now
able to watch television where previously this would invoke seizures. He
has had late nights (six days in a row whilst performing) experienced
great excitement, consumed some alcohol, enjoyed afternoon naps, been
under stress, travelled overseas, enjoyed rides exhibiting seizure
warnings (rollercoasters etc) and also been very ill including with high
temperatures and all with no hint of seizures. Previously, any one
of these factors would have precipitated tonic clonic seizures.
Once Juvenile Myoclonic epilepsy had
been diagnosed, George was told that he would never gain a drivers
licence, and could not work (unless he found an employer who would be
satisfied with a few hours here and there whenever he had a good period
of seizures). But George has been working casually as an entertainer and
is off to the snow fields to work over winter and…..George is
driving, gaining his licence just a few weeks before his 21st
birthday.
Pyridoxine Dependency may be a rare
condition. This is not known, but buying the vitamin off the shelf
without medical advice is not advisable and could cause other problems.
Off the shelf vitamins are usually bottled in large doses which may
upset the balance of other things in the body. The active form of the
vitamin is needed and a deficiency state should be diagnosed by your
doctor.
It is worth emphasising that George
was quite a unique patient in as much that his responses to a number of
drugs was really atypical for juvenile myoclonic epilepsy. Also I
am not sure that the problem of pyridoxine dependent seizures in
adolescents is particularly widespread.
A high dosage of Pyridoxine might be
harmful to the nervous system and George’s mother only commenced
treatment after consultations with his neurologist.
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