Urea Cycle Disorder Discussion Board

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Thank you so much Marta. This is not my child that I am speaking of. I am a nurse in an early intervention pre school and just found out about this child and his needs. It seems that he was in a semi-coma for 2-3 days was recently dicharged from the hospital with no dietary foloow-up or social services for Mom and child. He had amonia levels of 165 when they discovered hgis illness.I want to help Mom and know what I need to do to help this child which is why I have reached out to this chat. Thank you for your help.

Bonnie

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Mother of adult daughter with urea cycle disorder — Mary Gramaccioni, Fri Aug 26 16:18

I am the mother of Marta Gramaccioni, 42, with a urea cycle disorder citrullinemia. Having weathered some of the difficulties of living with this disorder for so long, perhaps I can offer a mother's... more
- UCD disorder — bonnnie, Wed Feb 1 22:47
  
  Hi ,I am very new to this diagnosis and would like to know if anyone can direct me to 0 protein food lists and perhaps reciptes for a menu for a 4 yera who now can not eat his favorite food of... more
- - hi bonnie — marta, Thu Feb 2 13:07
    
    hi bonnie, i am marta i have citrullinemia and wasn't dignosed until 3 months of age. i suvered learing disabilties and brain damage in certain areas. what ucd does your son have? if you haven't seen ... more
  - - Re: hi bonnie — Bonnie, Thu Feb 2 19:24
  - diet — Mary, Thu Feb 2 12:22
    
    Our daughter was diagnosed at 2 1/2 months. She is now 42. We were first advised to give her many foods full of carbs and sugar but I resisted. She loved popcycles and sherbert (although you always... more
  - - Re: diet — Bonnie, Thu Feb 2 19:36
      
      Thank you so much Mary for your quick response to my outreach of help. I am so happy to hear that your daughter has been able to live a long life of 42 years! WOW that makes me so happy to know that... more
  - food — mindy, Thu Feb 2 10:48
    
    please feel free to email me privately and I will give you my number so we can speak My son is 29 and I spent 27 of those years planning low protein diets
  - - Re: food — Anonymous, Thu Feb 2 20:08
      
      Hi I don;t know who to go about emailing your privately. Can you answer something for me. Is it the dietican that plans the lo protein diet or si there a regular menu like that for lo cholesterol and ... more
    - - low protein diet — mindy, Thu Feb 2 21:40
        
        sorry, my email is mindyrosen1@aol.com my son is diabetic so I avoided sugar. when my son was diagnosed 27 years agao , I had to make all his foods from scratch. Virginia Schuett was the only cook... more
  - UCD help and resources — Cindy Le Mons, Thu Feb 2 00:41
    
    Hi Bonnie, We have many helpful resources for UCD diet/nutrition, including videos, recipes, etc. I'd be happy to help get you started on the way to increasing your knowledge about the disorder and... more
  - - Re: UCD help and resources — Bonnie, Thu Feb 2 20:02
      
      Hi Cindy , I was unable to send you an email..not sure why perhaps I have the wrong address.
    - - Diet resources — Cindy Le Mons, Fri Feb 3 00:57
        
        Hi Bonnie, my email is Cindy@nucdf.org. :-) Best regards, Cindy
- my daughter — colleen, Wed Sep 7 09:49
  
  my daughter is 15, my son only lived to 8 days, he would have been 19 this year. They know so much more now. My daughter and I have OTC. I have only started having problems within the last ten years, ... more
- - Re: my daughter — Mary, Sat Sep 24 11:54
    
    It is so good to hear from those of you who have older children with urea cycle disorders! We have overcome the challenging early years but now share the ongoing struggles that our children face, or... more
  - - Re: my daughter — Barb Thomas, Mon Sep 26 13:15
      
      Amen to that!
  - Re: my daughter — marta, Thu Sep 22 20:15
    
    hi my name is marta and i have citrullinemia. i am the oldest living with this in the world i guess they told me. i had a lot more troubles in my teens taking care of my health and eat to much or not ... more
- Re: Mother of adult daughter with urea cycle disorder — mindy, Sat Aug 27 10:23
  
  hi, my son is 28! with what they told us when they were born, we are living with miracles. My son is the oldest male with arginase deficiency.
- - Re: Mother of adult daughter with urea cycle disorder — marta, Mon Sep 26 14:38
    
    Hi Mindy, I am the oldest living with Citrullinemia. i was born in the 60's and no newborn screening for urea cycle disorders was avalible only for pku, this is why i was not discovered until i was 3 ... more
  - Re: Mother of adult daughter with urea cycle disorder — Anonymous, Sat Aug 27 11:46
    
    Yes, they are miracles! We were told, when Marta was diagnosed 42 years ago, that she was the 4th in the world to be discovered with citrullinemia. It's been a long journey. The treatment apppears to ... more
  - - Re: Mother of adult daughter with urea cycle disorder — mindy, Sat Aug 27 13:29
      
      tRhey told me that Brett would not survive his teens. He has done so much more than they said. It is however a long journey. Feel free to email privately at miniminoo@aol.com
    - - Re: Mother of adult daughter with urea cycle disorder — Mary, Tue Sep 6 17:27
        
        They are heroes aren't they? We're pretty good too! I came out as anonymous but didn't mean too. My email is mgrama@comcast.net. Let's keep in touch!

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