 |
||
 |
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 radiation
The 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.
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
