Genetic experts and specialists are trained to counsel NF patients by
encouraging them NOT to reproduce. Some doctors and specialists
appear
to be unfeeling and arrogant, because they are trained to deal with
patients and patient's families from a "scientific" viewpoint instead
of an "emotional, human" viewpoint. It is intended to keep their mind
clear so they can deal with patients quickly and efficiently, so that
they will remember all of their research and training and use it in
the
best interest of their patients. If they have a good "bedside
manner",
they will appear empathetic, sympathetic and caring as well as
informed
about the patient's disease. If they don't have a good "bedside
manner" they just come off as arrogant and uncaring, making it
difficult for patients and their families to trust in their care and
expertise.

In my own experience with doctors regarding my NF (NF1 on maternal
side, NF2 on paternal side of my family), the doctors who have
treated
the greatest number of NF patients in their practice have discovered
that aggressive treatment of NF1 or NF2 tends to lead to more
disability, much earlier than if left alone. That is not to say that
all treatment is bad, simply that there is often such a negative
result
from surgeries, radiation, or chemotherapy that the patient would be
better off if left untreated except in situations where the tumors
are
causing paralysis, blindness, brain or spinal compression, etc. . .

Not all doctors or even neurosurgeons, neurologists, or genetic
experts
know enough about NF to automatically provide the best treatment for
these conditions. I was blessed to find an incredibly talented and
blessed neurosurgeon when I needed brain surgery to remove a very
large
acoustic neuroma, and while I ended up going completely deaf on that
side after surgery, and developing paralysis of the left side of my
face and loss of my sense of smell and sense of taste for several
months until steroids made the swelling of my brain go down, I ended
up
with the very best results of any NF patients I have met online or in
person. Most people never get any lost senses or facial movement
back.
I regained my facial movement as well as my sense of taste and
smell.
Doctors considered that "miraculous". When that neurosurgeon
retired,
his partner took over my care. This partner had cared for far more
people with NF when he lived in New York, and had seen far more
results
of each different type of treatment, so his statement to me
was "there
is no point in wasting your money on more expensive MRIs and
surgeries
unless and until you are willing to give up using whatever is being
affected by the tumors."

We did look into some of the newer treatments, yet so far have not
seen
any new treatments that offer a better prognosis, in fact, most of
them
guarantee a loss of use of whatever body parts are being affected.
Because of this, I have come to agree with the neurosurgeon
who said not to keep pursuing MRIs and surgeries or other expensive
treatments that do not lead to a better outcome. When tumor growth
makes life unbearable, or affects my ability to care for myself, I
will have to weigh the options and decide if surgery is a risk worth
taking again.

When the specialist spoke of it being better not to treat your son
"differently", he may not have been referring to medical treatment.
He
may have actually meant that making NF the focus of your son's life
would have a very detrimental affect on your son, and if that is what
he meant, he would be right. Any time anyone's life becomes focused
on
their disease, it literally "ruins" their life. Even their family
members begin to think of the disease instead of the individual, and
without intending to, they treat the individual as only a "medical
speciman". What doctors usually mean in this situation is that
parents
should focus on treating their child like a "normal" child, not
bringing up the topic of the disease every day. Parents who help
their
child stay focused on just being a normal kid are doing their child a
huge favor. Yes, they do need to be honest with the child regarding
the disease, but they will be helping their child to feel secure in
themself, and to find joy in life by helping them develop their
interests and talents in any way possible.

As a parent, or even as an individual with NF, we want to do
everything
we can to learn about the disease and find a way to "cure" or "treat"
it so they can get better. The reality at this point in time is that
while there are treatments for certain aspects of NF, there is no
cure,
and many treatments lead to more disability and even pain than simply
leaving the tumors alone. It sounds like your doctor really does have
a
bad bedside manner, however, when he said for you to be the mother
and leave the medical stuff to him, he may have really been trying to
help you to stress less about the disease, and just focus on the joys
of mothering your son, providing him as normal of a life as possible.
As you continue to research and even as you read posts here or on the
NF2crew site or other NF groups online, you will find that the few
people who make
NF the focus of their life tend to become bitter, depressed, angry,
they often feel
gypped withdrawing from socializing with anyone except people
with NF. On the other hand, those NF patients who pursue the joys of
life and focus
on the things they CAN do, and on the blessings that they do enjoy,
these
individuals are happier, as are their family and friends. You will
find many NF patients who develop a strong sense of humor as a way of
dealing with the down side of NF, thus making life easier on their
family
and friends as well as themselves. Oddly, having bad or negative
experiences in life
makes you so much more thankful for the positive or good things!
People with NF become very grateful for the things they can still do
when they find out how many other NF patients there are who cannot do
those things anymore. In a way, your research of NF will help your
family and your son to gain a greater appreciation for what your son
can still do.

One woman I met who had severe disfiguration from NF1 tumors all over
her face and body had the most wonderful way of dealing with the many
situations where people, particularly children, would stare and ask
her what was wrong with
her. She would say "I'm the bubble grandma!" Instead of focusing on
the negatives of her health, she put a positive spin on the
disfiguring bumps and lumps on her face and body, in addition, she
volunteered at the Veteran's hospital
bringing joy to others. Her example really has helped me to realize
the importance of focusing on living life and sharing with others
what
time and service you can. Your son is not "his disease"- what are
his
interests, what brings him joy? Help him to develop his own
interests
and hobbies. Help him to realize that NF is just something to "take
care of when necessary", but that it isn't what his life is about.
For
all you know, he may live a wonderful life and live to the ripe old
age
of 90. Yes there may be some down times, particularly if your son
develops any of the more dangerous tumors. On the other hand, your
son
may not have too much trouble other than looking a little different.
He already has been blessed so much to have been adopted into your
family, to be raised in a family who wanted him so much that you
searched the world for him to love and care for him. You will find
so much joy in helping him overcome any obstacles NF puts in his way,
and by doing so, you will be setting an example for others that love
is unconditional, that you love your son for who he is, not because
he is, or is not in "perfect health".

I hope and pray that you will be able to find a doctor or doctors who
will be more supportive of your efforts to make life better for your
son. Just please remember to do your research like you are now,
because some doctors haven't had NF patients before and do not know
that chemotherapy and radiation most often cause the benign NF tumors
to become malignant. New treatments are great, but always be aware
that just because a treatment might be the newest, but not
necessarily
the best option. Some tumors are better just left alone, and that isn
t necessarily a bad thing. Good luck to you and your son and family!

--- In neurofibromatosis2@yahoogroups.com, "Zubair Aslam"
<zubairaslam1979@...> wrote:
>
". . .The specialist was so arrogant, when I asked him
specific questions, he told me " you go be his mother and I'll take
care of the medical stuff". He keep reiterating that treating a child
with nf1 differently has a more negative effect than the actual
disease. I was so turned off by his remarks. Since then I have been
researching the disease online and am so terrified for my son. . . ."