Old  March 13th, 2012, 10:47am     #1
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Grandson had a pediatric appointment this morning and DD just called. He has to go see a specialist. The doctor thinks he may have optic nerve hypoplasia.
Basically it means the optic nerve is stunted. DD was born with it and for years she was treated for a lazy eye. It wasnt until she had a check up for school when she was 8 by a PA that someone finally caught it. An MIR showed she had no optic nerve in her left eye (so no vision) and that she was missing part of her brain by her pituitary gland. (brain malformations is very common, especially around there). She was lucky though and after months of testing it was shown other than being blind in one eye she suffered no other conditions. (ONH commonly goes hand in hand with hormonal deficiencies, cerebral abnormalities, developmental delays etc). My father's mom had it and it is believed to be genetic.

This was one of her biggest fears and she has worried about it since he was born. I guess the doctor saw something during the exam when she looked into his eyes (this is how it was discovered for DD after she was caught "peeking" during a courtesy eye exam.. The PA was the first one to catch her peeking with her good eye and when he examined her bad one, could not see the optic nerve). I am hoping we are all overacting and the doctors are just erring on the side of caution due to DD's medical history.

I tried reassuring DD that it's not the end of the world, look at her, she turned out just fine. She is able to do everything everyone else can, hell she is even an extremely talented artist. But I know the one thing that she is terrified over is the fact she was lucky, very lucky, in that she did not suffer from any of the other conditions that go hand in hand with it. She is scared he will not be as lucky.

Damn it.
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  Old  March 13th, 2012, 11:25am     #2
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I'm sorry for your worry, Pam. The doctor may be covering his bases because of the familial history, especially as it's probably out of his diagnostic domain.

I'm not sure how old your grandson is, but I imagine some of the more severe developmental issues might be evident already if they are to be an issue. The hormonal ones can all be attended to. It's never easy when our kiddos (or grand-kiddos) have health issues, especially ones that might require a life-time of treatment or accommodations.


"Beliefs do not affect facts. But facts should affect beliefs, if you are rational." ~ Ricky Gervais
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  Old  March 13th, 2012, 12:43pm     #3
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He is only about a month old, so a lot of this is going to be a waiting game over the next 15-20 years. While DD was cleared by specialists at age 8, we still had to watch her development through out childhood, especially puberty, to see if she developed hormonal problems later.

It all basically hinges on the specialists and MIR to see if he does indeed have a stunted optic nerve, and is it one or both eyes and then what if any, of his brain is effected. Even if his optic nerve is stunted, it could be years before they will know if he will suffer from any of the associated conditions. I am glad the doctors are taking it serious and it will be caught sooner than it was for DD if he does suffer from it, but I know how scary it is and really had hoped DD would not have to go through it with her own child. The good news is, so far at a month old, he is gaining weight right on schedule, his height etc is right on, and he has not shown any signs of jaundice etc.

The wait and see though is difficult and I suppose not going to get any easier. The social stigma of it though is also a huge concern for DD, she handled it well but of course there were always kids that made fun of her (with no sight, the eye wandered. She could control it using the eye muscles under a lot of circumstances, but other kids would pick up on it and tease her). I dont blame her for not wanting her son to go through it, what parent would. She was already worrying because he is a redhead and all the "ginger" comments, this would just be one more thing he would have to deal with. Hope the next two weeks fly by quickly so we have a better idea whats going on.
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  Old  March 13th, 2012, 12:50pm     #4
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I hope it's not so, ppam.

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  Old  March 13th, 2012, 1:05pm     #5
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Sending positive thoughts your grandson's way, hoping for a good outcome.
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  Old  March 13th, 2012, 6:08pm     #6
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I hope it isn't that. I will say a prayer for your grandson.

# Jeremiah 29:11
For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future.
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  Old  March 13th, 2012, 6:43pm     #7
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What if the hokey pokey is what its all about?
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  Old  March 14th, 2012, 12:24am     #8
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Hoping for the best for the little guy.
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  Old  March 14th, 2012, 1:44am     #9
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I am sorry. I know how hard it is for you to see the worry your daughter is going through too. You will need to be the strong one for them both as you always are. We are here for you when you need to talk. I hope and pray you will get good news like you did for your daughter.
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  Old  March 14th, 2012, 1:46am     #10
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  Old  March 14th, 2012, 3:05am     #11
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Let's hope it's just a cautious word but not a fact. Sorry, it is so hard to see our grandbabies go thru things

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  Old  March 14th, 2012, 7:40am     #12
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hope everything is ok!

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  Old  March 14th, 2012, 4:12pm     #13
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I wish your family the best possible outcome
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  Old  March 14th, 2012, 4:53pm     #14
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So very sorry to hear of this. Will keep your grandson and family in my thoughts. Please keep us updated as you learn more.
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  Old  March 14th, 2012, 11:53pm     #15
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Thanks everyone, will keep everyone updated.
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