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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UCD Med Trials -Wonder About Them? — Offishallie, Wed Jan 27 18:57

for ofishallie — marta, Fri Feb 12 20:48
- Marta --Hospital — Ofishallie, Mon Feb 15 14:31

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Jury Duty --Letter to Release From Service — Ofishallie, Wed Jan 27 18:27

Phase II FDA Test for Buphenyl Replacement Here I go — Ofishallie, Mon Jan 25 21:00

buphenyl replacement for ofishallie — marta , Mon Jan 25 21:14

peramedics — marta, Wed Jan 20 11:59

Emergency letter — Ofishallie, Sun Jan 24 15:33
- Emer. Letter I FOUND IT FOUND IT — Ofishallie, Wed Jan 27 18:16
- for ofishallie — marta, Mon Jan 25 10:46
- - Marta — Ofishallie, Mon Jan 25 20:50
Marta Paramedics — Ofishallie, Thu Jan 21 10:12
- ofishallie — marta , Sat Jan 23 18:19
- - Marta — Ofishallie, Sat Jan 23 18:59

Citrullinemia and High ASL and AST Results — Anonymous, Fri Jan 15 21:26

for anonymous — marta, Wed Jan 20 11:52
- Marta — Ofishallie, Thu Jan 21 10:08
High test readings — Ofishallie, Sat Jan 16 21:07

New Citrullinemia website — Anonymous, Fri Jan 15 16:30

New Citrullinemia web sit — Ofishallie, Sun Jan 17 12:06

favor if you have a minute or two — Theresa, Fri Jan 15 13:55

Re: favor if you have a minute or two — Jo, Tue Jan 19 00:24
I DID MINE!!!!! Only takes a few moments!! — Ofishallie, Sat Jan 16 21:00
- Thanks, sweet lady!!! — theresa, Sun Jan 17 10:08

Randalls 2nd birthday today.. — Afton, Thu Jan 14 00:18

Happy Birthday Randall — Jo, Fri Jan 15 05:26
Listing on the Wall — Offishallie, Fri Jan 15 00:11
- Re: Listing on the Wall — Afton, Sun Jan 17 00:21
- - UCD Memorial — Ofishie, Sun Jan 17 12:01

Gluten -Did you Know it is Protein? — Ofishallie, Sun Jan 3 23:47

marta — ofshiallie, Mon Jan 4 13:25
- Marta - Gluten — Ofishallie, Tue Jan 5 12:31

liver transplant — marta, Sat Jan 2 14:33

Liver Transplants — Ofishallie, Sun Jan 3 23:18

Happy Holidays — theresa, Thu Dec 31 15:30

Happy Hollidays — Ofishallie, Fri Jan 1 01:40

NORD Programs — Ofishallie, Fri Dec 11 11:49

Re: NORD Programs — Afton, Sat Dec 12 02:59
- NORD Shut Down — Ofishallie, Sat Dec 12 12:59

Buphenyl — cd, Tue Dec 1 11:07

Buphenyl — Rebecca, Wed Dec 2 23:04
for cd — marta, Wed Dec 2 11:36
- Re: for cd — Anonymous, Wed Dec 2 12:35
- - Re: for cd — nadia, Wed Dec 2 14:03
  - - for nadia — cd, Wed Dec 2 21:35
    - - for cd — nadia, Fri Dec 4 15:44
      - liver transplant — theresa, Sat Dec 5 18:26
        
        liver transplant — nadia, Sun Dec 6 10:29
        
        for nadia liver transplant — marta, Mon Dec 7 10:27
        
        for marta — nadia, Mon Dec 7 13:42
        
        for nadia — marta, Tue Dec 8 13:20
        
        Re: for nadia — nadia, Tue Dec 8 15:08
        
        for nadia — marta, Wed Dec 9 11:02
        
        for marta — nadia, Wed Dec 9 13:54
        
        for nadia — cd, Wed Dec 9 22:59
        
        for CD — nadia, Thu Dec 10 13:41
        
        to nadia — Anonymous, Fri Dec 11 16:55
        
        Re: to nadia — nadia, Sat Dec 12 09:43

How are you Marta? — theresa, Thu Nov 19 16:36

hi teresa — marta , Fri Nov 20 13:12
- marta... — theresa, Sat Nov 21 20:24
- - for teresa — marta, Sun Nov 22 10:57

skin biopsy next... — theresa, Wed Nov 11 01:47

skin biopsy — Offishallie, Thu Nov 12 11:13

anyone taking creatine? — theresa, Wed Nov 11 01:46

Creatine — Ofishallie, Wed Nov 11 10:38
- dosage? — theresa, Sat Nov 14 21:27

gatorade — marta, Sat Nov 7 11:20

Marta - Gatorade — Ofishallie, Sun Nov 8 11:54
- for ofishallie — marta, Mon Nov 9 11:46
- - Marta --Citrulline — Ofishallie, Mon Nov 9 16:15
gatorade — Theresa, Sun Nov 8 08:01
- for teresa — marta, Mon Nov 9 11:52
- - marta... — theresa, Tue Nov 10 07:15
- Theresa — Ofishallie, Mon Nov 9 08:13
- - ofishallie... — theresa, Tue Nov 10 07:12
  - - Theresa Naproxen Barrett's — Ofishie, Tue Nov 10 21:27
    - - Back pain — theresa, Wed Nov 11 01:43
      - Theresa — Ofishallie, Wed Nov 11 10:37
- Powerade — Ofishallie, Sun Nov 8 13:00
- - finally replying... — theresa, Wed Nov 11 01:54
  - - Theresa — Ofishallie, Wed Nov 11 10:43

stomach trouble — marta, Wed Nov 4 11:30

boost or ensure? — theresa, Fri Nov 6 15:52
Stomach problem — Ofishallie, Thu Nov 5 12:47
- for ofisahllie — marta, Fri Nov 6 10:36

Quick question...Carnitor — theresa, Thu Oct 1 17:38

L carnitor — Ofishie, Thu Oct 1 23:35
- fatty liver — Theresa, Fri Oct 2 10:41
- - Theresa Fatty Liver — Ofishallie, Fri Oct 2 12:33

Epigenetics NOVA 7PM CST — Ofishie, Tue Sep 22 20:02

what is epigenetics nova? — theresa, Thu Oct 1 23:00
- Epigenetics — Ofishallie, Thu Oct 1 23:29
- - ah... — theresa, Fri Oct 2 10:43
  - - Theresa --the ah moment — Ofishallie, Fri Oct 2 12:36

went to neuro today...Marta and Ofishie — Theresa, Mon Sep 21 19:35

New VERY IMPORTANT Website --Need Feedback ASAP — Ofishallie, Sun Sep 20 18:27

website — theresa, Tue Sep 22 11:39
Re: New VERY IMPORTANT Website --Need Feedback ASAP — nadia, Tue Sep 22 10:57

OTC or not? Still no answers — Theresa, Sat Sep 19 11:39

Theresa -- carnitor etc — Ofishallie, Sun Sep 20 00:57
hi teresa — marta, Sat Sep 19 18:20
- marta... — theresa, Sat Sep 19 19:21
- - for teresa — marta, Sun Sep 20 13:50
  - - marta... — theresa, Sun Sep 20 17:59
    - - for teresa — marta, Mon Sep 21 15:22

Any One on Here from France — Ofishallie, Tue Aug 25 17:57

Asymptomatic Citrullinemia — Amanda, Sun Aug 23 21:44

for amada asympotomatic citrullinemia — marta , Wed Sep 2 14:13
Asmptomatic Citrullenimia — Ofishallie, Tue Aug 25 10:48
- Asmptomatic Citrullenimia — Amanda, Tue Aug 25 17:04
- - Amanda and Mold — Ofishallie, Tue Aug 25 17:55

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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!