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Hi, I'm Bryanna. Come read the poem my mom wrote just for me!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.

Hadley School for the Blind


Support

Google Groups Subscribe to sod-l
Email:
Browse Archives at groups.google.com

Helpful Hints and Advice From other Parents

  1. Stimulate,Stimulate,Stimulate!!
  2. 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.
  3. 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
  4. i just believe in him and watch the miracles evolve....
    from Sue
  5. To concerntrate on the good times, to love with abundance and to not regret what you can't change.
    from Andrea
  6. 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
  7. "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.
  8. 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.
  9. 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
  10. 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
  11. 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
  12. 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
  13. 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
  14. That just about everyone has to deal with some "handicap", its really not so unusual.
    from Sandy
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  What's NEW
  Download Dr. Mary's handout in PDF format from the conference on the different hormone that affect our children.  
 *  Vision Loss and Autism : Comparisons  in PDF Format. Thank you to Marilyn and Jay Gense for letting us post this at our sight! and to Michelle for finding it for us!!
 * ONH Booklet in PDF Format
 * You can view Dr. Mehul Dattani presentation as a web page, or as  Power Point .

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
   
   
 

 

 
   
     
   

This website has been designed to help empower parents of children with ONH/SOD. All the information herein is subject to opinion. If you suspect your child may have ONH/SOD it is recommended that you seek professional advice from a certified pediatric ophthalmologist. No one individual or company connected with this website assumes any liability or responsibility
for it's contents.

© copyright 2008