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S.O.D. (Septo-Optic Dysplasia)


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  #21  
August 15th, 2015, 01:54 PM
Newbie
Join Date: Aug 2015
Posts: 1
Hi I have a 3 yr old girl who has bilateral optic nerve hypoplasia and has just been diagnoised with S.O.D and also has two hormone deficiencys and is also cortisol deficient. She has vision in her right eye and none in her left. She can play normally she can walk up and down stairs, catch balls, speech is amazing. I was absolutely gutted at these diagnoses and am so upset about it. She is having an MRI tues and im really scared for her. She is currently on 2 lots of medication every 8hrs and great ormond street (uk) have just informed me its highly likely that shes going to need the hormone injections too. After reading this forum I cant believe how lucky my daughter is. How do u all do it your amazing parents. I am 25 wks preg to and am high risk and also me and my partner have broken up. I feel really sayin wat I am when there are children alot sicker than mine. I dont know how to deal with this..
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  #22  
September 4th, 2015, 10:26 PM
Newbie
Join Date: Sep 2015
Posts: 1
Thank God I found your message and this group! I can relate to much of the content in your post and felt so lonely in this before. Your email brings me to tears. God bless you

Thank you very much for this post. I can relate. Your post made me breathe a sigh of relief I am not alone!!
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  #23  
December 6th, 2016, 06:11 PM
Newbie
Join Date: Dec 2016
Posts: 1
My grandson is 5 months old and just diagnosed with SOD because he has ONH and is missing part of the septum pilicudum. We are waiting on an apt with neurologist to find out if there are pituitary issues. He has some limited vision issues. He loses sight about 4 to 5 feet away. His genitalia are extremely small so he hasnt been circumcised yet. He likes to laugh but he cries if you laugh , unexpectedly. He shows some delays, he doesn't roll over. I just want to know what else to watch out for. The doctor said that we should do our own research. Who can help me know what's to come?
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