[blindkid] Septo-optic dysplasia?

[Steve Jacobson]

Rene,

I cannot be of much help with the specifics in your area, but one of our children has Septo-optic 
dysplasia and diabetes insipidus.  One reason I can't be of much help is that this condition varies 
greatly in terms of its affects on vision and other aspects of life.  You will very much need to be 
certain that you get in contact with specialists in whom you have some faith to analyze your child's 
condition.  The little advice I can give, though, is to not let the professionals get too hung up on the 
potential vision loss.  While this is important to any parent, the other aspects really need to be 
explored and addressed.  If you find that there is a dominant concern with vision issues, you might look 
for another specialist.  Also, be careful of what you find on the internet on this condition.  Often 
what you will read is a worst case scenario, and there are simply a lot of variables that cannot always 
be predicted.  Please know I am not trying to minimize the seriousness of this condition, but it will 
take time to truly sort out the effects and the remedies that need to be applied.  Also, clearly you 
have a number of other conditions that need to be addressed as well, and this obviously means you have a 
balancing act there.  There may be more help we can provide as this unfolds, though, and please know 
that we will all be thinking of you as you work through this.

Best regards,

Steve Jacobson

On Fri, 20 Jul 2012 10:23:36 -0400, Rene Harrell wrote:

>Hey all,

>Some of you on this list might know me fairly well as the mom to Clare, my
>10 year old daughter with developmental disabilities who is blind due to
>retinopathy of prematurity.

>Life has taken a bit of a detour with our most current child, Seraphina,
>who was born 25 days ago and is still in the hospital, currently in the
>cardiac intensive care unit. Seraphina was born with heterotaxy and other
>involved midline defects, including cleft lip and cleft palate. Currently
>she has been having a lot of endocrine issues (specifically diabetes
>insipidus was diagnosed finally yesterday), which led to an MRI showing she
>has an absence of the septum pelludicium. At this point she now has two of
>the three markers for Septo-optic dysplasia and ophthalmology is coming for
>consult today. She definitely has light perception and I believe she has
>already been making eye contact and tracking, so at this point she appears
>to have fully normal vision for a 3 week old infant.


>I know this is slightly O.T. but right now some of our biggest issues are
>balancing the endocrine issues with her cardiac issues (for those that are
>interested, she is a single ventricle currently, with hope for an eventual
>biventricular repair). I know that SOD frequently comes with endocrine
>issues, and I wanted to see if other parents on this list with SOD children
>could recommend a good endocrinologist in the New England area, or provide
>feedback on what we need to look for in an endocrinologist. This is a
>completely unexpected diagnosis and so we are running behind the eight ball
>trying to play catch up.

>Any help would be greatly appreciated.

>Rene--- mom to six amazing wonderkids, including Miss Clare age 10, ROP,
>DD, Autism
>-- 
>" I may not have gone where I intended to go, but I think I have ended up
>where I needed to be."
>-- Douglas Adams
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