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My
child has ONH/SOD, what do I do now?
 The
day you find out something is wrong with your child is pretty devastating,
at least this has been my personal experience. We would like to
make it a little easier by supporting you and helping you learn
what this all means. Keep in mind that no 2 children with ONH/SOD
are exactly alike so this page will be kept to the basics.
Let's start
with some basic words and informational websites to help.
The Eyes
Optic
nerve hypoplasia is ONH- is a visual disorder that affects the
optic nerve, the bundle of fibers that transmits signals from the
retina to the brain. In optic nerve hypoplasia, the nerve has not
developed. This may mean that the child may have some vision or
may be blind, depending on how much of the optic nerve is intact.
Fact
Sheet on ONH from Blind Babies Foundation
The
Doctor Is In: Optic Nerve Hypoplasia by Lisa Verderber, M.D. Pediatric
Ophthalmologist
NORD's
definition of SOD(Septo Optic dysplasia or DeMorseirs syndrome)
Nystagmus-
persistent, rapid, involuntary movement of the eyes
The
Eye
More
on Eyes
The Brain
Visual
Pathway
Septum pellucidum- The septum pellucidum is the structure
which lies at the medial wall of the lateral ventricle, and functions
to physically separate the lateral ventricle from the third ventricle.
Limbic system- A brain system managing physiological responses
to emotions and is associated with behavior. It includes the thalamus,
hypothalamus, amygdala, and parts of the reticular formation, brainstem
and cerebral cortex.
Hypothalamus-The
area of the brain that controls body temperature, hunger, and thirst.A
part of the diencephalon that maintains proper levels of body fluids,
heart rate, and other functions critical to survival. The things
regulated by the hypothalamus are subject to disruption by emotional
responses to certain stimuli, so the hypothalamus can help us stabilize
under duress.
Corpus
Callosum- the slab of white nerve fibers that connects these
two cerebral hemispheres and transfers important information from
one to the other.
MRI- a technique that uses magnetic fields and radio waves
to create high-quality cross-sectional images of the body without
using radiationThe
Endocrine
System
Endocrinology-
The study of the medical aspects of hormones and their associated
diseases and conditions. (An endocrinologist is a doctor that specializes
in the management of hormone conditions)
Hormone Testing your child may have- Take note the ones that
your child will most likely start with are TSH,T3,T4 and cortisol
level. If the child has had hypoglycemic episodes or not growing
well they will also have to have a growth hormone test.
Cortisol- The primary stress hormone. Cortisol is the major
natural glucocorticoid in humans.
Hypoglycemia- Low level of the sugar glucose in the blood.
Hypopituitarism- Underactivity of the pituitary gland, resulting
in inadequate hormone production.
Hypothyroid- Deficiency of thyroid hormone.
Micropenis- A penis that is abnormally small is referred
to as a micropenis True micropenis reflects failure of normal hormonal
stimulation or a failure of normal development (a birth defect).
Panhypopituitarism- Complex syndrome marked by deficiency
of hormones secreted by the pituitary gland. It is very rare. Most
often caused by a tumor of the pituitary gland. In children, it
results in dwarfism and is characterized by dysfunction of metabolism,
sexual immaturity and growth retardation.
Growth disorders- Conditions in children that result in underdevelopment
or overdevelopment of the body. Diseases of the endocrine glands,
nutritional problems, or genetic abnormalities are frequently the
causes.
Diabetes insipidus- Disorder of the hormone system caused
by a deficiency of antidiuretic hormone (ADH) normally secreted
by the pituitary gland. Characterized by passage of large amounts
of diluted, colorless urine (up to 15 quarts a day), unquenchable
thirst, dry skin and constipation.
Early Intervention
and Resources
For more information
on Early Intervention contact your local school district they should
be able to lead you to the nearest agency. If they can't help I
have a list for the U.S. contact me by e-mail below. Your child
is never to young to start early intervention!!
Debbie
Day has so many resources here!! Debbie is the mother of 2 children
with ONH/SOD.
Hadley
School for the Blind
Support
Helpful
Hints and Advice From other Parents
- Stimulate,Stimulate,Stimulate!!
- Keep a folder
of all medical records and an emergency letter from the physician
on your child's condition to bring to the emergency room if the
need arises. you will get correct treatment much faster this way
since most doctors are not familiar with ONH/SOD.
- The best
piece of advice I ever got was from a poster I read in Stevie's
therapist room. It said, not an actual quote, that Stevie needed
to be treated as every other child out there, that he is not special
but he does have special needs and that I should not treat him
any differently but to make allowances for his special needs.
I couldn't agree more. I also got some wonderful advice about
getting a new endocrinologist :) This has made a world of difference
to me and to Stevie.
from Sheryl
- i just believe
in him and watch the miracles evolve....
from Sue
- To concerntrate
on the good times, to love with abundance and to not regret what
you can't change.
from Andrea
- I can't think
of any piece specifically. But the SOD support group has been
invaluable in so many respects (Thanks you guys!)
from Wendy
- "Rememer
two things: First, life is fragile. Treat your child and yourself
that way everyday. Secondly, use your best judgement, whatever
you decide is the right choice, and love her with all you have."
from Christy P.S.
- Forget about
what happened yesterday and Start each day new. And that when
your kids are older they aren't going to remember that the house
was spotless or even all the effort it took to give them a normal
life. They are going to remember all the time you spent with them
and the love and understanding that you gave them.
from Christy P.
- The lack
of compassion, empathy and communication were the hardest to deal
with. The absolute isolation and feeling as though I was the only
person in the world in this position. The feeling of emptiness
- insecurity about what I could offer such a person. The overwhelming
feeling of love and protectiveness. I remember clearly after hearing
that diagnosis, holding my baby in my arms at the RCH in Melbourne,
looking around the ward, seeing so many sick children and saying
to Gary "there are many others a whole lot worse off".
from Roz
- None really,
we knew he needed more stimulation than most children other than
that just lots of unconditional Love and Understanding as with
all children.
from Ali
- Make her
do it. Even if she doesn't want to. It's much easier to do things
for her most of the time but you must push her if you want her
to be independent.
from Nichole
- When we found
a support group in Topeka, KS called Families Together for ages
birth to 21 yrs. They work with parents statewide in Kansas and
are a wonderful group. They have a toll free number and when it
was given to me I would call every day at first with whatever
concern I had that day. The people who answer phones are parents
that have a special needs child and have actually experienced
what we are going thru. I went to one of their annual conferences
- it was called "Coming Alive in '95" and I haven't
shut up since. (ha! ha!) Also, I found a magazine called Exceptional
Parent and I love it. It has so much info on so many topics. Technology,
Transition, Guardianship, Independent Living Issues, etc. P.O.
Box 2078, Marion, OH 43306-2178 or 877-372-7368.
from Margaret
- One of the
nurses in the Special Care Nursery told us to just take him home
and love him and deal with each day as it comes.
from Judy
- That just
about everyone has to deal with some "handicap", its
really not so unusual.
from Sandy
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