|
|
“Networking”
with the professionals Tremors - Article by Linda Manis Fifteen years ago when Adam
was four-years-old and developed a slight tremor in his hands I never
imagined that it would become more difficult to deal with than the
galactosemic diet or any of his speech, physical and learning delays. By the
time he was eight or nine, we could no longer ignore the fact that his
tremors were slowly getting worse. Controversy
still surrounded the idea that there might be a connection between tremors
and galactosemia. This was similar to almost twenty years ago when I founded
PGC, and when Christine Kovach united parents and medical professionals in
Oregon, and challenged them to take notice, to do a study, and yes there was
a connection between their speech disorders and galactosemia. This time,
however, I felt more and more alone. It seemed that Adam was really the only
one who was experiencing the tremors. Then,
two-and-a-half years ago at the PGC conference in Atlanta, GA, there was a
breakout session led by Dr. Skip Elsas. The room was overflowing with parents
looking for answers. The fact that there were so many of us convinced me and
I believe, other physicians as well, that maybe there was a connection! This
past June at the conference in Reno, NV, it was confirmed that a small
percentage (approximately 20%) of galactosemics do in fact suffer from
Ataxia, which is the neurologically-based problems such as tremors and
balance disorders. This is a beginning! I
think Adam has probably had just about every neuro test there is and still
there seems to be no magic “cure” or magic
“medication” to completely control his tremors. In addition, it
seems that the tremors do unfortunately continue to get worse. There’s
no question that Adam’s have gotten worse and sometimes he can
experience a head tremor (especially when he’s sick) and body tremor.
The medical professionals seem to think that as the children reach adulthood,
the tremors begin to progress to more Parkinson-type symptoms, which can to
some extent be controlled by medication, which must of course, be lactose-free. On this note, at the Reno conference, we met
a lovely, cheerful, beautiful twenty-five-year-old girl who similar to Adam
is in the beginning stages of this progression. Her mother and I watched
together as her daughter and Adam walked with us. We were almost in tears as
we realized that we had each FINALLY met another child so similar to our own. Adam will now
be seeing Dr. Louis (Skip) Elsas, who recently relocated to Miami. He
recommends that Adam see a Parkinson’s specialist and is in the process
of finding one who will work with him to treat Adam’s tremors. NOTE: At
the moment Adam is taking Sinemet, which is used for Parkinson’s and
was recommended by a mother in Australia. It seems to help somewhat but
we’re going to increase his dosage again soon. In the meantime, below are some of the terms
I have heard to describe Adam’s tremors within the past six months:
Cerebellar tremor; Head titubation (head tremor seen in Parkinson’s);
Truncal Ataxia; Intentional tremor; and Cogwheeling in elbow. Apparently,
different meds can treat specific areas. I hope to learn more within the next
few months and will share on the Web site and/or future newsletters. In the
meantime, if you are interested in speaking with me or others about this,
please e-mail me at LMScript1@aol.com or call
561-862-0748. Duarte
Galactosemia Dr.
Berry would like to know….if you have Duarte Galactosemia and have
cataracts please contact PGC at: 885 Del Sol Street, Sparks, NV, 89436 or 775-626-0885
or mesameadow@aol.com Dr.
Singh would like to know….your point of view on the Duarte diet, please
contact Janet Davis at: davis@ellijay.com or 706-276-2437 Table of contents |