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Anyone familiar with OTC deficiency?

Posted by on Apr. 29, 2013 at 2:39 AM
  • 7 Replies

Love to hear from anyone who has a child with this or similar. It's a urea cycle defect. My 3 yr old son has just been diagnosed.

thanks

by on Apr. 29, 2013 at 2:39 AM
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Replies (1-7):
frndlyfn
by Emerald Member on Apr. 29, 2013 at 3:02 AM

Never even heard of OTC deficiency.   I hope the treatment is easy for him.

SissyAnn141
by on Apr. 29, 2013 at 3:08 AM

 

  look up health groups. 

annie82
by Bronze Member on Apr. 29, 2013 at 4:34 AM

Ok thanks not sure what to look for exactly in those groups. It's a rare disorder that to put very simply causes ammonia to build up in body which leads to swelling on brain, coma then death. We had a very nasty scare about a week ago which put him in icu with encephalitis following that came the diagnosis.

cjsix
by faith on Apr. 29, 2013 at 4:42 AM

 That sounds frightening. I'm sorry that you are dealing with that but,it is good that they have found what is wrong. I hope someone can help you find a group with other moms here who know what it is like to have a child with it.

cjsix
by faith on Apr. 29, 2013 at 4:44 AM

 Try putting OTC Definciency into the group search or the other search above it. The box for these will be on the right side on your "My Groups" page.

CureUCD
by on May. 1, 2013 at 9:29 PM

Hi Annie,

My family has OTC deficiency, and I am also executive director of the National Urea Cycle Disorders Foundation. I would be happy to talk with you. We can help you with all the info and resources you will need and network you with other families with urea cycle defect. Please feel free to email me, and our website is www.nucdf.org.

annie82
by Bronze Member on May. 8, 2013 at 11:35 PM

Bump.....anyone?

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