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How did you
feel when you first found out your Child had KC?
Parent
#1
When I first found out my child had KC, my
biggest fears were that my child's future would be forever blighted
by Keratoconus. I feared that they might struggle at school and
wouldn't be able to do the things they love like paint, draw and
play music. That as they grow up and become an adult they will never
be able to drive and may not marry and have a family or hold down
a job. But then I started trying to find out as much as I could
about Keratoconus. I e-mailed doctors and talked to adults who had
Keratoconus. Many of them were children when they were diagnosed,
but they had jobs, an education, drove and were married. Some had
children themselves. After reading as many personal stories about
KC as I could, writing and talking to Keratoconus doctors and patients
alike, I felt so much better about my child's future. They were
not going to go blind and they still had a glowing and wonderful
future in front of them even with Keratoconus.
Parent
#2
I
felt I went through some what of a grieving process when my child
was first diagnosed. I grieved for the things that I felt she might
not experience in life. Every time I tried to express this to anyone,
I was often made to feel that I was feeling sorry for myself or
my child. In hindsight, I realize that the emotions I experienced
were just part of the process I had to go through. I think it is
completely normal for any parent whose child is affected by any
medical condition to go through this same array of feelings. I know
this to be true now but at the time, it really angered me when other
people would constantly tell me how "ok" it was living
with kc. At the time, I felt that it wasn't ok. I was upset, angry,
scared, exhausted and sad all at the same time and saying, "things
would be ok", just wasn't going to put it right.
What
Question do you think you should ask a doctor to find the right
one for your child?
Parent
#1
The
big question for me was....what does being a kc specialist mean?
I had many doctors tell me they worked with patients but I did not
know how many. What expertise made you a "specialist"?
Here are some questions I found
helpful:
1. How many
Keratoconus patients do you work with per month? (Still not sure
what a good number is though!)
2. Do you have a corneal topography machine?
3. Do you have fitting sets or access to them and how many? (One
KC doctor told me that 5 sets is a good number.)
4. Do you have a doctor on call 24 hours for emergencies?
5. Can you prescribe medication?
6. What are your hours? (So as not to conflict with school and other
important activities.) 7. Do you see many children with KC?
Parent
#2
I
always find having a quick look round the doctors office as a good
indication of how many children they treat, look for kids books,
toys and play things and if their office is generally child friendly.
Also the type of doctor and specialist you see can play a factor.
Ophthalmologists
are trained and licensed to do surgery, while optometrists are not.
But the debate is that if you see an Ophthalmologists they are more
likely to go with surgical options first where optometrists maybe
more skilled at fitting lenses and spend more trying to use the
optical method and keep surgery as the absolute last resort.
What are the
difficulties of being a parent of a child with KC?
Parent
#1
After
accepting that my child had KC, we had to figure how to deal with
various situations. I found that the biggest obstacle was often
the ignorance of other people who played important roles in my child’s
life, such as teachers, counselors, etc. They seemed to be unable
to understand that KC wasn’t just another type of vision problem
like nearsightedness. We had to explain that certain precautions
needed to be taken such as wearing sunglasses when outside for recess,
protective glasses when playing kickball or other similar activities
and making sure he uses his eye drops when needed.
Parent
#2
The
most difficult thing about being a parent of a child with KC is
the conflicting information you get about treatments. Sometimes
the need for one type of treatment is clear and in others, like
our case, it is not. It is important for parents to know that they
should not let a surgeon convince them that their child is probably
in need of a transplant (like happened to us) and that they should
change doctors without hesitation if they are not happy. That once
you have a diagnosis you have time to find a doctor and make a decision...meaning
that the waiting will not influence the outcome of the disease.
Also, knowing that my child will have to experience something that
will cause discomfort and perhaps pain (RGPs). The anxiety of wondering
how I help my child deal with the adaptation period also weighs
on me.
What have
you told the school about your Childs KC?
Parent
#1
Some
thoughts on things I plan to tell my child's teachers are:
* Definition of KC
* Contacts are not cosmetic. If for some reason they could not wear
the contacts, it would not mean that they could wear glasses and
see as well.
* He/she may have problems with glare, bright lights.
* Seeing red/green writing on a white board is more difficult than
black/blue.
* Explain the difference between hard/soft lenses. The child may
get dust, etc under their lens and have to leave the classroom to
go to the nurse.
* Explain why contacts are not as comfortable as on a regular eye
- thinning cornea means nerves closer the surface.
* Explain the need for lengthy doctor appointments. The fact that
you may not be able to find someone near home and your child may
need to leave school to attend appointments. Therefore, your child
may require extra time for homework.
* Written copies of material presented on board or on overheads
may be needed.
* What precautions must be taken in classes like shop, phys. ed?
(I'm still not sure of the answers to this one.)
* Just as you get a good fitting lens, vision could change and require
a new prescription.
* Make sure teachers know how much information child has about KC.
(Would depend on age of child.)
* Child starting out in RGP lenses may have red eyes and should
not be accused of taking drugs. I have heard of this happening several
times.
* Federal guidelines about medical 504 plans (Special education
plans in the US). Different districts have different policies.
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