Urea Cycle Disorder Discussion Board

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Does anyone have problems with their childs sleeping? My son is 16 months old and still wakes up 4-5 times a night. Sometimes he wants to get up at 3 or 4 am and play. He has never been a good napper either, usually about 45 min total during the day. He has Citrullinemia and I am wondering if his poor sleeping habits could be due to his condition or maybe the medications (he is on Arginine and Buphenyl). Does anyone else have this problem?

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Sleep problems — Cindy Le Mons, Tue Dec 28 11:45

Hi Ano, Children with UCD often have sleep disturbances that can have various causes. One of the most probable causes is fluctuating brain chemicals due to the disorder. For some of our UCD kids, it... more
- Re: Sleep problems — Anon, Mon Jan 3 14:54
  
  Thank you! Yes it is always hard to determine if it is their condition or just them? I was just wondering if others with children of Citrullinemia experience this, sounds like some of you do. Thank... more
- - Sleep problems w/citrullinemia — Katie, Wed Jun 6 15:03
    
    Hi everyone, I'm new to this and have been reading and can't believe how many similarities there with my son, Payton he's 3 and has Citrullinemia... Payton has been having alot of belly aches and... more
  - - Symptoms — Cindy, Thu Jun 7 10:40
      
      Hi Katie, I just sent you an email -- hopefully we can talk in depth about some of Payton's problems and some solutions. Warmly, Cindy NUCDF
    - for katie — marta, Thu Jun 7 09:55
      
      i am an 43 year old women that has citrullinemia. i get severe nausea afte my medicne for citrullinemia has gone into my g tube. i don't get belly pain often.in my case it's usaly gas. i was born... more
    - buphenyl — James Moses, Thu Jun 7 09:39
      
      Katie make sure you are delivering the Buphenyl with sufficient calories and be careful with apple juice as it is highly acidic.
- Re: Sleep problems — nadia, Thu Dec 30 10:44
  
  hi my son is 1 year and 10 months he has in the last few months been waking up a lot in the night. he is also very hyperactive i thought the hyperactivity was casing him to sleep less but not too... more
- - for nadia — marta, Fri Dec 31 11:07
    
    nadia i would think that might contribute but i don't know. the last month or so i have not sleeping well tossing and turning all night even with my medicine i take for sleep. it is allmost as if i... more
  - - Re: for nadia — nadia, Sat Jan 1 12:56
      
      my son has citrullinemia type 1
    - - for nadia — Anonymous, Sun Jan 2 09:40
        
        hi nadia, i think i have citrullinemia type 1 but not sure. i was born with citrullinemia is this type1?marta
      - Re: for nadia — nadia, Mon Jan 3 16:36
        
        there is citrullinemia type 1 which is the neonatal onset children become ill within a few days of being born. This is the really serious type. Citrullinemia type 2 is the one whhere symptoms are not ... more
        for nadia — marta, Tue Jan 4 11:08
        
        then that is what i have citrullinemia type 1 and unfourntantly i have had a lot of set backs and complications from it marta
        Re: for nadia — nadia, Tue Jan 4 16:48
        
        I really feel for you Marta it must be horrible I feel so upset every day about my child having it. Have u given any more thought to the liver transplant it could seriously improve the quality of... more
        Re: for nadia — nadia , Wed Jan 5 13:39
        
        i have not condisered liver transplant because of my feeding tube now i hardly go to the hospital. i don't think i would be a canidaite at this time. how about you have you thought about... more
      - Re: for nadia — Afton, Sun Jan 2 02:57
        
        hi Nadia... Hope your little special man is coping well and you all enjoyed a nice chrissy together.. it will be 3 yrs since my little boy Randall passed away at 5 days old from citrullinemia mid... more
      - Re: for nadia — nadia, Mon Jan 3 16:33
        
        thanks alot for all your kind thoughts it means alot, I remember talking to you before Afton how is your baby? xx
        Re: for nadia — Afton, Tue Jan 4 00:52
        
        Hi Nadia, Rixon is now 15 months old! super healthy which is a huge relief.... he's only a carrier of citrullinemia. we often think of you guys... all the best for the new yr, we hope it's 'non... more
- to cindy sleep problems — marta, Wed Dec 29 11:03
  
  hi cindy, i have major sleep problems and take trazadone for it and some nights it is if i have not taken anything andi am up and down all night or tosing and turning all night. could be my... more
ano sleep problems — marta, Tue Dec 28 10:36

nice to know there is somebody out there with citrullinemia like me. i am 41 years old and am the oldest living with citrullinemia. yes as a child and even know i have sleep problems. when i was... more

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