This is not meant to be used as a diagnostic tool. If you suspect
that your child has ONH/SOD please see a doctor as soon
with ONH/SOD may or may not exhibit all or some of these characteristics.
We are not medical doctors, but parents of children with ONH/SOD.
Some of these characteristics we have NOT found in medical research
papers but know as true because We are parents! These are our observations,
as parents, that we have found in common among our children!
children with ONH/SOD have an absence or malformation of the septum
pellucidum and the corpus callosum (these are called midline defects)
but some children without malformations of the septum pellucidum
and the corpus callosum have been diagnosed with variants ONH/SOD.
All of the kids have bilateral or unilateral optic nerve hypoplasia
(ONH) or short optic nerves this is usually accompanied by nystagmus
which is easily observed as shaking eyes. ONH causes our children
to be blind or visually impaired. Vision therapy and mobility training
helps our children a lot. Also some of the children have cleft lips
and/or palettes which is also considered a midline defect.
Many of our
children are hypopituitarism which means their pituitary gland does
not function properly or in many cases not at all. There are hormones
for replacement. These hormones include, thyroid, for hypothyroidism,
cortef, for cortisone deficiency, a drug called ddavp that helps
with diabetes insipidus, which is a water diabetes, symptoms are
an unquenchable thirst and heavy (an understatement) urination.
This causes mood swings due to a fluctuation of sodium levels. Also
some of the children suffer from hypoglycemia which means low blood
sugar levels, and can be an indicator that growth hormone is needed.
Growth hormone helps many of our children grow as many are deficient
of this hormone too. Sometimes because of the pituitary problems,
a child with ONH/SOD will have precocious puberty, which is an early
onset of puberty or the onset of puberty will have not come because
there is no hormone and will have to be started with testosterone
or estrogen. Also, a characteristic of ONH/SOD is micro genitalia,
which means the genitalia is small, early testosterone therapy is
with ONH/SOD have problems with their hypothalamus gland which controls
sleep and appetite and temperature to name a few of it's functions.
Some of our kids don't sleep well, (another understatement!) and
some kids have problems regulating there temps causing hypo and
hyper thermia,and some kids have to be told when they have had enough
to eat. Some of the children have or develop seizures and are on
medication for them. Some are hypotonic (low muscle tone) at birth,
requiring p.t. (physical therapy), o.t. (occupational therapy).
Many children with ONH/SOD also have Sensory Integration Disorder,
most are tactilely and orally defensive, and some have hypersensitivity
to sound. We, as parents, have also noticed obsessive behavior in
some of our children. They tend to ask questions over and over even
after answered, obsess on the same subject for long periods of time,
and become very upset when routine is interfered with. Lots of them
also chew on their finger. It is also reported by some parents that
their children fall into the autistic spectrum category. Many of
our children also have gifted areas particularly in music. Many
of the children have incredible memories and have incredible strength.
Most of our kids are developmentally delayed either due to lack
of vision or neurological problems, or being diagnosed with hypothyroid
too late. It is imperative that all children with ONH/SOD be seen
by a endocrinologist immediately upon diagnosis with follow ups.
The last and
most wonderful characteristic is their contagious laugh!!! and the
most wonderful smile you have ever laid eyes on!!!!! We, as parents,
treasure every miracle we are allowed to see! We have been truly