Septo-Optic Dysplasia

Septo Optic Dysplasia (SOD) aka de Morsier syndrome.  Something that Noah has yet to be officially diagnosed with but also something that I am pretty dang sure he has (gut feeling) and it is only time before it is actually listed on his medical records.  This diagnosis has three key points.

1. Optic Nerve abnormalities: vision impairments. 
• Noah's left eye optic nerve is severely underdeveloped
2. Absence of the septum pellucidum (mid line brain structure): developmental delays 
•  Not sure if Noah is missing this or not because his MRI was done when he was 5 days old and according to his neuro they are unable to see any newborns septum pellucidum that young.  However, he is missing a large portion of the other part of the midline brain called the corpus callosum.
3. Hypopituitarism: hormone and adrenal gland problems
   
•  so far Noah has not been diagnosed with any form of hormone problem however he does exhibit some symptoms of hormone problems.  Some of these same symptoms are also side effects of the anti-seizure medication he is on so we are not yet sure what Noah's story is.  He has to wait three months until we can check his cortisol levels and other hormones because he was put on a really high dose of steroids to help with his infantile spasms.  This is a very concerning topic for me because we have to wait and wait before we can see the endocrinologist and get some good tests.  Right now every time he has something happen like he over heats or vomits or doesn't seem to grow in length I question this aspect of this syndrome. 

I have been following the SOD Facebook community now for about three months.  I have gained a wealth of knowledge just by reading the wall questions or comments.  The Magic Foundation is also a fantastic resource to gain knowledge about this condition.  From my own research I found the whole definition of SOD to be a bit confusing.  It seems to me that you do not need to have all three conditions to actually be diagnosed with SOD contradictory to every definition I have found on the internet.  It also seems that throughout the years many doctors have diagnosed this condition to many who may exhibit only one or two of the three symptoms.  Then I have also read that the one condition that you HAVE to have to even be categorized with SOD is optic nerve abnormalities but like I just mentioned many have perfect sight in both eyes and have had this diagnosis put in their medical records. 

Here is a list of links that I pulled off the Magic Foundation website.  It lists 'some' of the conditions or symptoms found in those with SOD (this does not mean you have to have all of these.  Noah so far only has been medically diagnosed with the one but time will tell about others.)

• Chronic Renal Insufficiency
• Congenital Adrenal Hyperplasia
• Cushing's Syndrome
• Growth Hormone Deficiency in Children
• Growth Hormone Deficiency in Adults
• Idiopathic Short Stature
• Insulin-like Growth Factor Deficiency
• Intrauterine Growth Restriction
• McCune-Albright Syndrome /
  Fibrous Dysplasia
• Panhypopituitarism/Tumors
• Precocious Puberty
• Russell-Silver Syndrome
• Septo Optic Dysplasia /
  Optic Nerve Hypoplasia
• Small for Gestational Age
• Thyroid Disorders