"Uncertainty is a very good thing: it's the beginning of an
investigation, and the investigation should never end" - Tim Crouch
We made an appointment with a paediatric neurologist who had one look at the EEG and immediately informed us that J does not have Petit Mal. She also mentioned that the "abnormal" wave patterns might even be normal (?!).
The neurologist prescribed Tegretol, which was to
address the "abnormal" focal wave patterns. The theory was that if
Tegretol had a positive effect, J probably suffers from epilepsy, if not - back
to the drawing board. We were also instructed to monitor the body spasms, which
everyone assumed at the time were epilepsy seizures.
During the same time we contacted a specialist dietician, who worked out
a low Glycemic Index (GI) diet for J. Literally, overnight, J's
concentration span improved and the excessive tiredness disappeared. We are
still astonished at the improvements J
showed since his sugar intake was limited! Do yourself a favour
and visit the GI Foundation. Also check out this
and many other documentaries about sugar.
During a six week period J
was weaned off Epilim, while the Tegretol dosage was systematically increased.
The bed-wetting stopped completely but the body spasms continued. Although
lower in intensity, the actual quantity of spasms throughout a sleep cycle,
remained the same. Monitoring right through the night revealed that J was almost constantly moving his
body (e.g rolling, pulling legs up, etc.) - no wonder he was so tired in the
mornings!
We discovered a magnificent Android application called Vibration Monitoring. We placed a mobile
phone on top or even underneath J and was able to get a rough idea of spasm
intensity and frequency. Using a video camera, we were able to monitor J for
three whole nights during the six week period. By doing this, we were able to
monitor potential spasm changes as the medication dosages were altered.
After showing our results to the neurologist in October 2014 she decided
that J should undergo
an extended, overnight, video EEG.
And the result?
- The latest EEG profile (Tegretol dosage at 600 mg) was identical to the first EEG profile, which was done prior to any medication administered. There was absolutely no change.
- According
to the analysts, there was no correlation between the spasms and the
"abnormal" waves. We are still not convinced about this finding.
What does this mean?
- Tegretol has zero effect (in
J's case) on the
"abnormal" waves.
- If the analysts are right it
means the spasms probably indicate some sort of sleep disorder (e.g. Periodic Limb
Movement disorder).
What now?
- The neurologist
prescribed Ritalin to address J's attention span problems, but
kept Tegretol at the same dosage.
- Currently,we're still not
sure what is going on. We have so many questions:
- If the epilepsy medication
does not have any effect on the "abnormal" EEG waves, why take
it?
- Are these
"abnormal" waves causing brain damage?
- If so, why not try
something else.
- If not, why bother taking
Tegretol?
- Our next appointment with
the neurologist is in November - we will keep you posted!
Experience: that most brutal of teachers. But you learn, my God do you
learn. - C. S. Lewis
