Urea Cycle Disorder Discussion Board

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Urea Cycle Disorder Discussion Board

WELCOME!

Everyone is encouraged to discuss all aspects of caring for a child with a UCD on this general discussion board. Feel free to introduce any topic that concerns you about dealing with someone affected by a UCD.

`Though most of us parents already know this. . .``NEVER, regardless of what you read here, change your child's treatment without first discussing it with your physician. BE AWARE: INFORMATION YOU POST HERE MIGHT BE MONITORED BY HEALTH INSURANCE COMPANIES OR UNSCRUPULOUS ENTITIES TO ADVERSELY AFFECT YOUR FAMILY OR OTHERS.`

My husband and I are the parents of a teenager with a partial CPS deficiency and seizures secondary to the disorder.

You may email us if you wish, but by sharing your concerns here you can help others also.

Again, welcome...

Angela

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Isabella — leanora, Mon Feb 11 21:55

for leanora — marta, Wed Mar 20 21:23
- isabella — leanora for Marta, Sat Mar 23 08:25
- - for leanora — marta, Sun Mar 24 14:18
  - - for marta — Leanora, Tue Apr 2 20:19

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Marketing Research Survey — W Fisher, Fri Jan 4 11:22

Soliciting UCD families — Cindy Le Mons, Sat Jan 5 07:51
- Marketing Research Survey — Walter Fisher, Sat Jan 5 09:18

low protien foods — marta, Wed Oct 31 11:30

Re: low protien foods — Anonymous, Thu Nov 1 11:04
- Re: low protien foods — marta, Sun Nov 4 09:39
- - Re: low protien foods — mindy, Mon Nov 5 07:07
  - - for mindy — marta, Tue Nov 6 10:46
    - - Re: for mindy — mindy, Wed Nov 7 07:59
- Re: low protien foods — Anonymous, Thu Nov 1 11:07

high ammonia — marta, Wed Oct 10 08:32

allmost on transplant list — marta, Sat Oct 6 18:57

Re: allmost on transplant list — mindy, Sun Oct 7 10:01
- mindy — marta, Sun Oct 7 14:36
- - Re: mindy — mindy, Sun Oct 7 15:42
  - - mindy — Anonymous, Sun Oct 7 19:36
    - - Re: mindy — mindy, Sun Oct 7 19:55

hospitalized often — marta, Wed Sep 12 20:44

liver transplant — colleen, Mon Sep 17 17:09
- Re: liver transplant — Anonymous, Tue Sep 18 04:17
- - for annonymous — marta, Fri Oct 12 13:15
  - to anoymous — marta, Thu Sep 20 19:31
  - - marta — mindy, Fri Sep 21 07:16
    - - for mindy — marta, Fri Sep 21 21:29
      - Re: for mindy — mindy, Fri Sep 21 21:39
        
        for mindy — marta, Fri Sep 21 22:12
        
        Re: for mindy — mindy, Sat Sep 22 09:55

hospitalized often — Anonymous, Fri Jun 1 09:54

Re: hospitalized often — James Moses, Sat Jun 2 12:12

possible live donor transplant — marta, Sat Feb 4 13:31

Living donor transplant — Cindy Le Mons, Sun Feb 5 00:46

How do I get diagnosed? 25 y/o male with suspected UCD. — Christopher Vidrine, Fri Nov 25 21:52

How to get diagnosed — Cindy Le Mons, Sun Nov 27 12:01
- Re: How to get diagnosed — Anonymous, Mon Nov 28 02:04
Re: How do I get diagnosed? 25 y/o male with suspected UCD. — nadia, Sat Nov 26 13:12
Re: How do I get diagnosed? 25 y/o male with suspected UCD. — Anonymous, Sat Nov 26 07:22

help — marta, Thu Sep 8 18:24

No Subject — marta, Thu Sep 8 11:59

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

UCD disorder — bonnnie, Wed Feb 1 22:47
- hi bonnie — marta, Thu Feb 2 13:07
- - Re: hi bonnie — Bonnie, Thu Feb 2 19:24
- diet — Mary, Thu Feb 2 12:22
- - Re: diet — Bonnie, Thu Feb 2 19:36
- food — mindy, Thu Feb 2 10:48
- - Re: food — Anonymous, Thu Feb 2 20:08
  - - low protein diet — mindy, Thu Feb 2 21:40
- UCD help and resources — Cindy Le Mons, Thu Feb 2 00:41
- - Re: UCD help and resources — Bonnie, Thu Feb 2 20:02
  - - Diet resources — Cindy Le Mons, Fri Feb 3 00:57
my daughter — colleen, Wed Sep 7 09:49
- Re: my daughter — Mary, Sat Sep 24 11:54
- - Re: my daughter — Barb Thomas, Mon Sep 26 13:15
- Re: my daughter — marta, Thu Sep 22 20:15
Re: Mother of adult daughter with urea cycle disorder — mindy, Sat Aug 27 10:23
- Re: Mother of adult daughter with urea cycle disorder — marta, Mon Sep 26 14:38
- Re: Mother of adult daughter with urea cycle disorder — Anonymous, Sat Aug 27 11:46
- - Re: Mother of adult daughter with urea cycle disorder — mindy, Sat Aug 27 13:29
  - - Re: Mother of adult daughter with urea cycle disorder — Mary, Tue Sep 6 17:27

No Subject — Leanora , Wed Jul 20 22:04

possible surgery — marta gramaccioni, Wed May 4 14:57

Surgery — Cindy Le Mons, Thu May 5 11:58
Re: possible surgery — Anonymous, Thu May 5 08:17
- possible surgery — marta gramaccioni, Fri May 6 13:08
- - Surgery — Cindy Le Mons, Sat May 7 13:06
  - - Re: Surgery — marta, Sun May 8 11:49

Happy 9th Birthday — Leanora, Fri Mar 25 22:40

Re: Happy 9th Birthday — nadia, Sat Mar 26 11:15
- for Nadia — Isabella, Sat Mar 26 11:44

for Lenora — marta, Wed Mar 9 11:01

Marta — Leanora , Fri Mar 11 19:11
- for Lenora — MARTA , Thu Mar 17 12:37
- - for marta — Leanora , Tue Mar 22 19:06

You are not alone! — mindy21502, Tue Mar 8 08:38

Mindy — mindy, Wed Mar 9 07:43

No Subject — Leanora, Sat Feb 26 11:19

Re: No Subject — Afton, Mon Feb 28 01:06
- Re: No Subject — Anonymous, Mon Feb 28 16:01
- - ( Isabella ) Newfoundland — France vaillancourt, Tue Mar 1 08:50
  - - for France — leanora, Thu Apr 4 00:27
    - Isabella — Leanora, Tue Mar 1 14:06
  - Re: No Subject — Afton, Tue Mar 1 04:11
  - - Re: No Subject — Leanora , Tue Mar 1 14:18
Re: No Subject — marta, Sun Feb 27 12:34
- Re: No Subject — Leanora , Mon Feb 28 16:14
- - for Lenora — marta, Tue Mar 1 18:16
  - - for Marta — Barb Thomas, Thu Mar 3 20:10
    - - marta — marta, Fri Mar 4 10:46
    - for Marta — Leanora , Tue Mar 1 19:17
    - - for Marta — Leanora, Tue Mar 1 19:21
Re: No Subject — Anonymous, Sun Feb 27 11:15
- Re: No Subject — Leanora , Mon Feb 28 16:21
- - Re: No Subject — nadia, Sun Mar 6 17:26
  - - Nadia — Leanora , Mon Mar 7 22:30
    - - Re: Nadia — Anonymous, Tue Mar 8 16:11
      - Nadia — Leanora , Tue Mar 8 20:19
f0r lenora — Anonymous, Sun Feb 27 09:51

possible wrist surgery — marta, Fri Feb 18 09:52

ammonia levels — colleen, Wed Sep 7 09:52
- for collen — marta, Thu Sep 8 12:08
- Re: ammonia levels — Mary, Thu Sep 8 10:38
Support during surgery — Cindy Le Mons, Sat Feb 19 14:32
- for cindy — marta, Sun Feb 20 10:55
- - Citrullinemia — Cindy Le Mons, Mon Feb 21 18:53
  - for marta — Kelly b,, Mon Feb 21 00:48
  - - for kelly — marta, Tue Feb 22 09:54

citrullinemia — marta, Wed Feb 2 12:40

Managing citrullinemia — Cindy Le Mons, Thu Feb 3 11:50
- Re: Managing citrullinemia — marta, Fri Feb 4 11:49
- - Managing citrullinemia — Cindy Le Mons, Sun Feb 6 20:35
  - - for cindy — marta, Mon Feb 7 10:10
    - - Re: for cindy — nadia, Tue Feb 8 06:38
      - Managing citrullinemia — Cindy Le Mons, Mon Feb 7 11:36
      - for cindy — marta, Tue Feb 8 11:04
        
        Citrullinemia — Cindy Le Mons, Tue Feb 8 12:36

metradole steroyde — marta, Fri Jan 28 16:00

Steroids in UCD — Cindy Le Mons, Sat Jan 29 14:50

Sleep Problems — Ano, Mon Dec 27 09:13

Sleep problems — Cindy Le Mons, Tue Dec 28 11:45
- Re: Sleep problems — Anon, Mon Jan 3 14:54
- - Sleep problems w/citrullinemia — Katie, Wed Jun 6 15:03
  - - Symptoms — Cindy, Thu Jun 7 10:40
    - for katie — marta, Thu Jun 7 09:55
    - buphenyl — James Moses, Thu Jun 7 09:39
- Re: Sleep problems — nadia, Thu Dec 30 10:44
- - for nadia — marta, Fri Dec 31 11:07
  - - Re: for nadia — nadia, Sat Jan 1 12:56
    - - for nadia — Anonymous, Sun Jan 2 09:40
      - Re: for nadia — nadia, Mon Jan 3 16:36
        
        for nadia — marta, Tue Jan 4 11:08
        
        Re: for nadia — nadia, Tue Jan 4 16:48
        
        Re: for nadia — nadia , Wed Jan 5 13:39
      - Re: for nadia — Afton, Sun Jan 2 02:57
      - Re: for nadia — nadia, Mon Jan 3 16:33
        
        Re: for nadia — Afton, Tue Jan 4 00:52
- to cindy sleep problems — marta, Wed Dec 29 11:03
ano sleep problems — marta, Tue Dec 28 10:36

happy holidays — marta, Mon Dec 20 11:28

hpn1 trail — marta, Wed Dec 8 19:15

HPN-100 trial — Cindy Le Mons, Thu Dec 9 11:25

infection by feeding tube — marta, Mon Nov 1 13:18

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Our home page is http://www.2endure.com. You may wish to visit the many links specific to UCDs we have listed there. THANKS FOR VISITING, and ya'all come back!