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Does rishi have SOD???


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  #1  
March 15th, 2008, 09:56 AM
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I am getting more and more worried about my son lately. He has turned almost 15 months and is still performing like a 7-8 month baby. We still have no diagnosis. After reading alot here and there I feel that his symptoms are quite like SOD. surprisingly no doctor ever spoke of it to me. Please let me know how do you diagnose SOD. His symptoms are

1. Poor vision. ( No nystagamus) but distinct exotropia (strabismus)
2. Extremely large for his age. Almost like a 3 year old
3. constipation and Gastro Intestinal reflux. ( Both most exaggerated)
4. Gross global development delay

Rishi is quite a fun loving kid and plays a lot with people. He is quite social and enjoys company of people of all ages.

He has had a couple of genetic tests but nothing much came out of them. His MRI's are also quite non suggestive of any particular disorder.

Please let me know if his symptoms match with anything you know
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  #2  
March 17th, 2008, 09:54 AM
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Based on what you have said, my inclination is no rishi does not have SOD. To have SOD, there has to be at least 2 of the following things:

1. optic nerve hypoplasia - the optic nerves are underdeveloped as well as the optic chiasm. This is seen on an eye exam where the eye is dilated to see the nerve and the retina. The optic nerve will appear to be small and maybe even pale. From what you have said, he does not have this.

2. brain structure and function abnormalities - the hallmark characteristic of SOD that distinguishes it from just the optic nerve hypoplasia is an absent septum pellicidum. This is the webbing between the two hemispheres of the brain. It is missing in almost all kids with SOD, very rare is it present in a child diagnosed with SOD. This is detected on the MRI and as rishi has had one and no mention was made about a missing septum pellicidum, I would be inclined not to think SOD. Also, kids with SOD tend to have problems with the corpus callosum either being thin or absent which can lead to mental retardation issues.

3. Pituitary Involvement - kids with SOD also have endocrine disorders stemming from the pituitary. The most common ones are growth hormone deficiencies (small kids, poor growth, may be classified as failure to thrive), hypothyroidism, cortisol (the body's stress hormone) deficient and diabetes insipidus (different from juvenile diabetes this is the "water diabetes"). I have never heard of a child with SOD having over production of any of these hormones. So if your son is very large for his age, he is not growth hormone deficient.

I do know from my dd's VI preschool that there where children with vi issues not related to SOD and a lot of other developmental and physical problems as well. Unfortunately global developmentl delays seems par for the course with most VI kids as most of our early learning is done by sight. In regards to the GI, I don't think that fits any one particular disorder. That could occur for many reasons.

I know this has to be hard to not really know what is going on and not having a diagnosis, but after dealing with SOD in my daughter and learning everything I could, based on the info you gave us, rishi does not have SOD. Now I could be wrong, but based on what you wrote, I would suspect some other type of VI disorder.
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  #3  
March 20th, 2008, 08:10 AM
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Hi,

Thanks so much for the information. I really do not know whether to be glad that Rishi does not have SOD or not. I think I will rather be glad... because now i have hope that he will be independent one day. thanks once again
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  #4  
March 20th, 2008, 06:54 PM
pattyandthemoos's Avatar Administrator
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I agree with Jennifer. My son has ONH and I was so worried for the longest time about him having SOD. I think sometimes babies with ONH have some of the characteristics of SOD because of their vision impairment. Brandon was globally developmentally delayed. He didn't walk till he was 21 months, didn't talk till he was closer to three, had failure to thrive, nystagmus, hypotonia, reflux and some serious feeding issues. He is doing much better than he was as a baby but still is developmentally delayed. He was diagnosed with an autism spectrum disorder at three. (((HUGS))) your little one may have to overcome some developmental issues just because of the ONH.
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