Urea Cycle Disorder Discussion Board

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Hello Marta ,my daughter has never had high protien foods ,and the only place I take her is to Mc Donald`s I usually order her a Happy Meal ,she eats the small fries and has the soda ..we remove the burger of course ,she likes to get a toy lol...I feed her the low protien food that is sent to her by her dietitian ...she has low protien mini pizza shells with tomato sauce and a low pro whey loaf which she calls her cheese:) its hard to get her to eat the fruit & vegetables which of course but I am hoping she will when she gets older..she also gets low pro pasta she has with tomato sauce or tomato soup ...I make low pro rice with a bit of onion corn & canned peas & carrots ...I get the low pro bread mix but she eats toast for a bit and the bread gets old...she has her drink(polycose,duocal,& cyclinex2 powder) mixed which from an infant she has considered as her milk...for her Breakfast she will have rice krispies with a bit of that formuls and the rest of the formula with the meds 4 times daily...sometimes she will have the formula with chocolate quick or strawberry quick mix and calls that her milkshake ....popcicles,fruitsnacks and other treats with no protien I use when she is hungry in between ...she does well now cause thats all she has known from infancy ,I hope she will continue as she grows to teen and into adulthood ...she eats alot of the same meals daily but it consists of mostly low protien foods ...sorry to hear of the stressfulness you have been going through hun ...My bigest fear for my daughter was how she will take things when she gets older .I hope you will be ok hun ...I dont know why people wouldn`t understand ...its hard enough that you have citrullinemia ,you dont need any other stress ..thinking of you.. hugs Leanora & Isabella

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No Subject — Leanora, Sat Feb 26 11:19

Well my daughter was born with Citrullinemia and will be 9 on March the 25th never thought she would still be here ...thank God for her strength and will to live :)
- Re: No Subject — Afton, Mon Feb 28 01:06
  
  My little boy passed away at 5 days old from Citrullinemia.. he would have been 3yrs old in january this yr... seems like only yesterday! we also had another pregnacy effected but chose to terminate... more
- - Re: No Subject — Anonymous, Mon Feb 28 16:01
    
    I am so sorry for your loss.. I am from Newfoundland ,Canada ,Isabella is the only child in my province with Citrullinemia as I was told it was a rare disease,she was 3 days old when she took 2... more
  - - ( Isabella ) Newfoundland — France vaillancourt, Tue Mar 1 08:50
      
      Hi Isabella, My name is France, I live near you I am in New Brunswick Cadana. I have a son With CPS deficency he is 18 years old but he as big health problem!!! Please right back if you get this... more
    - - for France — leanora, Thu Apr 4 00:27
        
        Hello France,this is Leanora,Isabella`s mom,I hope your son will be ok! It has been a very stressful 11 years for me ,I know how diffucult it is raising a child of this nature.
      - Isabella — Leanora, Tue Mar 1 14:06
        
        hello ,I recieved your message ,Isabella is doing great so far ,so your son too has a big health problem ,its hard,when when you have kids that are ill ...New Brumswick is close :)
    - Re: No Subject — Afton, Tue Mar 1 04:11
      
      What a special girl! and very lucky! Randall had his seizures at 3 days old too and also went into a coma, he was then flown to a hospital 4 hrs away with a NICU unit, but went undiagnosed and was... more
    - - Re: No Subject — Leanora , Tue Mar 1 14:18
        
        It was very heart breaking to hear your story ,I know how bad it feels to see your child that way and feel helpless ,Isabella was all tubed up to they took off her umbiblicial cord and had all these... more
- Re: No Subject — marta, Sun Feb 27 12:34
  
  hi Lenora, I am glad your daughter made it. how is she doing now? does she go to the hospital for high ammonia very much? i am a 41 year old women with citrullinemia and back when i was born thier... more
- - Re: No Subject — Leanora , Mon Feb 28 16:14
    
    Hello Marta,my daughter is doing great :) She doesnt go to the hospital with high amonia much ,she follows her diet strictly and takes her meds and formula regularly...My daughter will be 9 on March... more
  - - for Lenora — marta, Tue Mar 1 18:16
      
      hi Lenora, does your daughter eat food as well as drink her formula? Are you in canada? yes buphenyl cause bad ulcers and ertions of the stomach. in 2006 i had 6 ulcers due to buphnyel and other meds ... more
    - - for Marta — Barb Thomas, Thu Mar 3 20:10
        
        We live in Port Coquitlam, British Columbia. Our son, Ethan has ASA, is 15 years old. When we eat out he has fries, salad, stuff that is naturally low in protein. Ethan is very stable. Has a gtube... more
      - marta — marta, Fri Mar 4 10:46
        
        Hi Barb, how are you? i am glad that your son is so medicaly stable which i happen to be to at the time. last time i was in the hospital with high ammonia was September of last year and have not been ... more
      - for Marta — Leanora , Tue Mar 1 19:17
      - for Marta — Leanora, Tue Mar 1 19:21
        
        sorry I never answered your Question ...yes we are in Canda ..a province called Newfoundland :)
- Re: No Subject — Anonymous, Sun Feb 27 11:15
  
  That is good news, thank you for posting it is always Nice to hear progress. How is your daughter doing?
- - Re: No Subject — Leanora , Mon Feb 28 16:21
    
    My daughter is doing very well ...she follows her diet and takes her meds and formula by mouth and does`nt mind it ..I guess thats all she has ever known since she was diagnosed at 3 days old..she... more
  - - Re: No Subject — nadia, Sun Mar 6 17:26
      
      Hi Leanora I have been reading your posts on here; thanks for sharing ur story. My little boy is 2 he has citrullinemia diagnosed at 5 days old. His ammonia went up to nearly 700 and was high for... more
    - - Nadia — Leanora , Mon Mar 7 22:30
        
        Hi Nadia ,Isabella didnt walk till she was almost 2...she was slow at some things at first and that kinda scared me ,she couldnt even drink out a sippy cup at 2 and never got off the bottle till she... more
      - Re: Nadia — Anonymous, Tue Mar 8 16:11
        
        Hi leanora, thanks for your email. I know wat you mean my son is also the only person with citrullinemia in our city. I worry because he isnt talking yet and also he has massive tantrums; but not... more
        Nadia — Leanora , Tue Mar 8 20:19
        
        Thanks Nadia for your kind words ,I am sure his tantrums are normal lol Isabella had her share as well...Isabella can be hyper at times ..she can go to bed at 1:00am in the morning and be up again at ... more
- f0r lenora — Anonymous, Sun Feb 27 09:51
  
  F. Glad she made it I am a women wot with citrullinemia I allm0st did not make 0 cause I was vorn borb wheb tere was n0 n0 newborn screening marta

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