Urea Cycle Disorder Discussion Board

Untitled Document

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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liver transplant — marta, Tue Jun 30 14:11

for marta — nadia, Wed Jul 1 14:33
- for nadia — marta, Thu Jul 2 14:27
- - for marta — nadia, Thu Jul 2 15:55
  - - Re: for marta — Anonymous, Thu Jul 2 17:36

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for ofisahllie — marta, Sat Jun 27 13:12

For Marta — Ofishallie, Sun Jun 28 09:12
- for ofishallie — marta, Sun Jun 28 15:15
- - For Marta — Marta, Sun Jun 28 15:32
  - - for ofishallie — marta, Mon Jun 29 11:39
    - - Marta Your Tests ETC — Offishalle, Mon Jun 29 12:07

What to do??? — Theresa, Fri Jun 26 21:41

Thanks... — Theresa, Wed Jul 1 19:48
for theresa — marta, Sat Jun 27 12:35
Theresa - Experimenting — Ofishallie, Sat Jun 27 08:06

Dr. Mark Korson? — Theresa, Tue Jun 23 11:05

Dr Korson — Pam Northrop, Fri Jun 26 21:02
- Thank you... — Theresa, Fri Jun 26 21:34
- - Dr Korson — Pam, Sat Jun 27 22:13
  - - for pam — marta, Mon Jun 29 11:44
    - Pam — Ofishallie, Sun Jun 28 08:58
    - - clonazapam for ofishallie — marta, Mon Jun 29 11:52
      - Marta -clonazepam — ofishallie, Mon Jun 29 12:35

mickey button — marta, Mon Jun 22 12:19

Marta — Theresa, Tue Jun 23 11:02

next years confrence — marta, Sat Jun 20 15:10

Marta — Ofishallie, Sun Jun 21 00:48
- for ofishallie — marta, Sun Jun 21 19:33
- - Marta — Ofishallie, Sun Jun 21 20:49
  - - Marta and Ofishallie — Theresa, Tue Jun 23 11:04
    - - Theresa and Gluten Monster — Ofishallie, Tue Jun 23 12:07

sleepiness — marta, Thu Jun 18 18:23

ammonia and orotic acid levels/meals?? — Theresa, Tue Jun 16 13:14

Theresa Ammonia eta — Ofishallie, Wed Jun 17 01:01

lab for metabolic doctor — marta, Mon Jun 15 13:26

Marta and Lab Work — Ofishallie, Tue Jun 16 01:00
- for ofishallie — marta, Tue Jun 16 12:27
- - Marta for Ofishallie — Ofishallie, Tue Jun 16 12:56
  - - for ofishallie — marta, Tue Jun 16 13:37
    - - Marta from Ofishie — Ofishallie, Tue Jun 16 14:16

20 week scan today.. — Afton, Tue Jun 9 03:06

Afton — Jo, Tue Jun 9 20:59
- Re: Afton — maria, Wed Jun 10 08:48

Lots of questions tonight...protein amounts in foods? — Theresa, Sat Jun 6 23:01

Nutritional analysis — Cindy Le Mons, Mon Jun 8 12:30
- Cindy — Theresa, Tue Jun 16 14:04
Where are the protein grams — Ofishallie, Sun Jun 7 00:14
- ofishallie... — Theresa, Sun Jun 7 12:51
- - Theresa and boonies — Ofishallie, Thu Jun 11 00:53
  - For Theresa FoooooooD! — Ofishie, Sun Jun 7 16:31

Citrulline? — Theresa, Sat Jun 6 23:00

Citrulline — Ofishallie, Sun Jun 7 00:16

Amount of protein in diet??? — Theresa, Fri Jun 5 11:13

Amount of protein. — CindyB, Sat Jun 6 08:25
- CindyB tracking Protein — Ofishallie, Sun Jun 7 00:19
- to Cindy — Theresa, Sat Jun 6 22:59
- for cindy — marta, Sat Jun 6 12:53
Theresa Protein — Ofishallie, Sat Jun 6 00:56
- to ofishallie — Theresa, Sat Jun 6 22:53
- - Theresa and Freakin Broccoli — Ofishallie, Sun Jun 7 00:00
- for ofishallie — marta, Sat Jun 6 13:07
- - For Marta — Ofishallie, Sat Jun 6 13:34
  - - for ofishallie — marta , Sat Jun 6 18:15
    - - For Marta — Ofishie, Sat Jun 6 18:58
      - for ofishallie — marta, Sun Jun 7 00:00
        
        Marta — Ofishallie, Sun Jun 7 00:07
        
        for ofishallie — marta, Sun Jun 7 11:10
        
        For Marta — Ofishallie, Sun Jun 7 13:14
        
        for ofishallie — marta, Sun Jun 7 23:11
        
        For Marta — Ofishallie, Mon Jun 8 01:08
        
        ofishallie — marta, Mon Jun 8 21:58
        
        Marta would — Ofishie, Wed Jun 10 10:09
for theresa — marta, Fri Jun 5 13:50

mood swings — marta, Tue Jun 2 13:25

Sorry — Theresa, Tue Jun 2 19:37
- to theresa — marta , Tue Jun 2 22:52
- - Marta — Theresa, Wed Jun 3 16:15

Normal Liver Results First Time in Life — Ofishallie, Sun May 31 01:18

:D — Jo, Tue Jun 2 23:01
- Liver enzymes — Ofishallie, Wed Jun 3 00:48
Excellent news! — Theresa, Tue Jun 2 19:35
- for teresa — marta, Wed Jun 3 11:39
- - Marta — Theresa, Wed Jun 3 11:57
- Theresa Thanks — Ofishallie, Wed Jun 3 00:56
- - Ofishallie — Theresa, Wed Jun 3 11:58
  - - Theresa — Ofishallie, Wed Jun 3 12:21
    - - Yep, that's me... — Theresa, Wed Jun 3 16:13

ranfe of motion — marta, Wed May 27 18:14

Range of Motion Marta — Ofishallie, Sun May 31 01:08

hip pain — marta, Sat May 23 11:53

Seizures? — theresab72, Thu May 14 12:11

Re: Seizures? — Angela Kidd, Tue Jun 2 11:10
- RE:Seizures Angela — Ofishallie, Wed Jun 3 09:17
Theresa Seizures — Ofishallie, Sat May 16 09:02
- seizures — theresab72, Wed May 20 18:07
- - Theresab72 — Offishallie, Wed May 20 23:42
Re: Seizures? — maria, Fri May 15 16:00
- Depakote... — theresab72, Wed May 20 18:08
- - Re: Depakote... — Angela Kidd, Tue Jun 2 11:12
  - - Angela Kidd --Depakote — Ofishallie, Wed Jun 3 08:51
  - Depakote — Ofishallie, Wed May 20 23:19
- seizures — nadia, Sat May 16 15:24
- - Re: seizures — Afton, Thu May 21 02:00
  - Symptoms of Seizures — Ofishallie, Sun May 17 01:12
  - - seizures in children — theresab72, Wed May 20 18:13
    - - seizures in children — Ofishallie, Wed May 20 23:15
- Re: Seizures? — Anonymous, Fri May 15 16:27
- - Theresa — maria, Sat May 30 12:20
  - - Theresa - Maria — Ofishallie, Sun May 31 01:00
    - - Re: Theresa - Maria — maria, Wed Jun 3 03:41
      - Re: Theresa Maria — Ofishallie, Thu Jun 4 01:20
Re: Seizures? — Afton, Fri May 15 04:16
- Afton, seizures — Ofishallie, Wed May 20 23:24
- sorry — theresab72, Wed May 20 18:14

shaky — marta, Sat May 9 06:54

shakiness — theresab72, Wed May 20 18:17
- shakies — Ofishallie, Wed May 20 23:46
- - Cocoa Butter & P Butter Cups — Kathy, Thu May 21 20:59
  - - Cocoa Butter and PB Cups — Ofishallie, Sun May 24 13:58
    - - Re: Cocoa Butter and PB Cups — Anonymous, Sun May 24 21:57
  - shakiness — marta, Thu May 21 18:33

panic attacks — marta, Wed Apr 29 13:04

appetite — marta, Sun Apr 26 05:16

feeding — nadia, Mon May 18 14:42
- for nadia — marta, Tue May 19 11:02
- to Nadia — marianne, Tue May 19 07:00
- - for marianne — marta, Wed May 20 12:03
Marta appetite — Ofishallie, Mon Apr 27 01:21
- nausea — theresab72, Wed May 20 18:19

ammonia — marta, Fri Apr 17 20:01

Re: ammonia — Anonymous, Fri May 8 08:36

IT"S A HEALTHY BABY BOY!!!! — Afton, Thu Apr 16 03:16

Re: IT"S A HEALTHY BABY BOY!!!! — Maria, Mon May 4 16:48
- Re: IT"S A HEALTHY BABY BOY!!!! — Afton, Tue May 5 01:19
Re: IT"S A HEALTHY BABY BOY!!!! — Danielle, Tue Apr 21 09:33
Healthy Baby Boy — Ofishallie, Mon Apr 20 02:21
Re: IT"S A HEALTHY BABY BOY!!!! — Jo, Sun Apr 19 02:22
- Re: IT"S A HEALTHY BABY BOY!!!! — me, Thu Apr 23 00:11
- - for 'me' — afton, Fri Apr 24 02:24
- Jo Baby Boy — Ofishallie, Mon Apr 20 02:19
- Re: IT"S A HEALTHY BABY BOY!!!! — Afton, Mon Apr 20 00:32
YEAH — Rebecca, Thu Apr 16 19:51
for afton — marta, Thu Apr 16 12:03

son travis — Janet black, Wed Apr 15 14:29

for janet — marta, Thu Apr 16 11:52
- CHOP geneticist — Kristin DeFrancesco, Wed May 20 12:15

acid refux and qucik gag refulx — marta, Sat Apr 11 12:40

Gag Reflex — Rebecca, Sun Apr 19 23:04

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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!