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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gatorade — marta, Sat Nov 7 11:20

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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

Genetic Inheritance Patterns From Australia — Ofishallie, Fri Aug 21 16:06

Gang I will add info a later --Am Still Researching De Novo — Ofishallie, Fri Aug 21 16:58
- OTC --DeNovo Mutations Etc.--New Data — Ofishallie, Sat Sep 19 23:57
- - More to Understand Genes vs Environment — Ofishallie, Sun Sep 20 00:42
  - Reprint: to Understand More About Epigenetics — Ofishallie, Sun Sep 20 00:38
What are Gene Mutatations? — Ofishallie, Fri Aug 21 16:21
If its in my family --what are the chances for my children? — Ofishallie, Fri Aug 21 16:12
- HHH or ornithine translocase deficiency Gene Information — Ofishallie, Fri Aug 21 16:38
- - ofishallie...thanks for posting this — theresa, Sat Sep 19 11:42
  - - OOPS — theresa, Sat Sep 19 22:58
    - Theresa More on tryptophan — Ofishallie, Sat Sep 19 17:28
    - Theresa _ Ice Cream — Ofishallie, Sat Sep 19 16:59
    - - ofishallie...ice cream — theresa, Sat Sep 19 22:05
    - Theresa — Ofishallie, Sat Sep 19 16:46
    - - ofishallie — theresa, Sat Sep 19 22:06
- Citrullemia Gene — Ofishallie, Fri Aug 21 16:33
- OTC Gene Information — Ofishallie, Fri Aug 21 16:29

Drugs that may cause Hyperammonemia — Ofishallie, Mon Aug 17 14:29

interesting... — Theresa, Sat Sep 19 12:25
- Theresa — Ofishallie, Sat Sep 19 16:48
- - also on depakote... — theresa, Sat Sep 19 23:01
  - - Theresa — Ofishallie, Sun Sep 20 00:47
    - - ofishallie — theresa, Sun Sep 20 10:25
      - Theresa and all Records for Ancestors — Ofishallie, Sun Sep 20 12:22
  - dentist — theresa, Sat Sep 19 22:00

For Offishalie — Vaidarbhi Gupta, Fri Aug 14 04:02

Vaidarbhi -- Ammonia level — Ofishallie, Thu Aug 20 14:05
- Fever during pregnency — Vaidarbhi, Thu Aug 27 10:25
- for Ofishallie — Nadia, Fri Aug 21 13:00
For V Gupta — Ofishallie, Mon Aug 17 12:48
- For V Gupta — Ofishallie, Mon Aug 17 13:58
- - For Ofishallie - Mutations — Vaidarbhi, Wed Aug 19 11:55
  - - Vaidarbhi Mutations — Ofishallie, Wed Aug 19 14:15
    - - Vaidarbhi Mutations Never Mind I realize New Delhi (nm) — Ofishallie, Wed Aug 19 14:18
      - For Vaidarbhi — Ofishallie, Thu Aug 20 13:51
        
        Ofishallie - More Family Info — Vaidarbhi, Fri Aug 21 12:27
        
        Vadarbhi --Family and Enviro — Ofishallie, Fri Aug 21 15:30
        
        Family Info - Miscarriages — Vaidarbhi , Thu Aug 27 09:47
        
        Re: Family Info - Miscarriages — Anonymous, Tue Nov 3 16:20
        
        Re: Family Info - Miscarriages — Anonymous, Wed Nov 4 11:25
        
        Marta — Ofishallie, Thu Nov 5 12:33
        
        CVS Testing — Ofishallie, Wed Nov 4 09:50
        
        Re: CVS Testing — Anonymous, Thu Nov 5 16:48
        
        Anonymous — Ofishallie, Fri Nov 6 00:15
        
        CVS tests — Afton, Wed Nov 4 01:24
        
        Re: CVS tests — Anonymous, Thu Nov 5 16:45
        
        Afton — Ofishallie, Thu Nov 5 12:31
        
        Vaidarbhi — Ofishallie, Thu Aug 27 10:25
        
        Long time - No Activity — Vaidarbhi, Wed Sep 9 08:02
        
        New Data Under DeNovo — Ofishallie, Sun Sep 20 00:00
Re: For Offishalie — nadia, Sun Aug 16 09:55
- Hi Nadia! — Vaidarbhi, Mon Aug 17 09:15
- - Re: Hi Nadia! — nadia, Mon Aug 17 10:02
To Vaidarbhi — Afton, Sun Aug 16 02:56
Hello — CindyB, Sat Aug 15 10:23
- Thanx Cindy — Anonymous, Sun Aug 16 02:16
- - DNA sequencing... — CindyB, Sun Aug 16 12:11
  - - Cindy - Carrier Testing — Vaidarbhi , Mon Aug 17 08:59
    - - Carrier OTC — CindyB, Wed Aug 19 14:27
      - Re: Carrier OTC — nadia, Thu Aug 20 16:18
        
        Re: Carrier OTC — Ofishallie, Fri Aug 21 15:48
        
        nadia.lmc@hotmail.com — nadia, Sat Aug 22 17:43
for vaidarbhi — marta, Fri Aug 14 16:45
- For Marta — Anonymous, Sun Aug 16 02:35

brain mri — marta, Sat Aug 8 20:50

lesions — Amanda, Tue Aug 25 17:16
Marta Brain MRI - Long Term Treatment of Hyperammonemia — Ofishallie, Sat Aug 22 11:11
Brain MRI — Ofishallie, Sun Aug 9 12:48
- for ofishallie — marta, Sun Aug 9 13:25
- - For Marta — Ofishallie, Sun Aug 9 23:19
  - - for ofshallie — marta, Mon Aug 10 12:11
    - - For Marta — Ofishallie, Mon Aug 10 12:30
      - for ofishallie — marta, Mon Aug 10 16:16
        
        Getting Older --Doctors Don't Really Know What Will Happen — Ofishallie, Mon Aug 10 17:04
        
        OTC Tragedy — Amber Nusall, Wed Sep 16 01:25
        
        for amber otc tragedy — marta, Thu Sep 17 13:04
        
        Hi Marta — Amber, Fri Sep 18 19:23
        
        to amber — marta, Sat Sep 19 10:27
        
        Hi Marta — Amber, Mon Sep 21 18:56
        
        for amber — marta, Tue Sep 22 13:06
        
        OTC Tragedy --Amber — Ofishallie, Wed Sep 16 02:28
        
        ofishallie — marta, Mon Aug 10 22:47
        
        Marta — Ofishallie, Mon Aug 10 23:12
        
        for ofishallie — marta, Wed Aug 12 14:31
        
        For Marta — Ofishallie, Thu Aug 13 14:50
        
        for ofishallie — marta, Fri Aug 14 11:41

cloudy urine? — embarrassed one, Sat Aug 1 19:54

Cloudy Urine — ofishallie, Sun Aug 9 12:41
for embarressed one — marta, Sat Aug 1 21:59
- marta — e. o., Sun Aug 2 12:31

brain damage — marta, Sat Aug 1 14:08

Marta... — Theresa, Sun Aug 2 00:09
- for teresa — marta, Sun Aug 2 20:25
- - marta... — Theresa, Tue Aug 4 21:43
  - - for teresa — marta, Wed Aug 5 12:07

urea cycle or HHH — Steve Dufresne, Mon Jul 27 22:08

for steve — marta, Tue Jul 28 13:37
Urea Cycle or HHH — Ofishallie, Tue Jul 28 10:50
- HHH — steve, Thu Jul 30 20:31
- - Steve HHH — Ofishallie, Thu Jul 30 21:00
  - - To Ofishallie — Steve, Mon Aug 3 00:43
    - - for steve — marta, Tue Aug 4 00:17
      - To Marta — steve, Tue Aug 4 21:22
        
        for steve — marta, Wed Aug 5 11:57
        
        My HHH — steve, Wed Aug 5 21:47
        
        for steve — marta, Thu Aug 6 13:50
        
        To Marta or Ofishallie — Steve, Sun Aug 16 21:18
        
        To Steve — Ofishallie, Tue Aug 18 10:21
        
        To Ofishallie — steve, Thu Aug 27 20:33
        
        for steve — marta, Mon Aug 17 12:26
        
        for Marta — steve, Thu Aug 27 20:00
        
        for steve — marta, Fri Aug 28 11:42

US --New Government Ins Program — Offishallie, Fri Jul 17 08:14

Entire bill — Ofishallie, Thu Jul 23 08:36
- The Bill Calls Mentally Disabled Retarded — Ofishallie, Mon Jul 27 16:17
- Health care bill — Kathy, Mon Jul 27 13:47
Call Your Congressmen Tell them to Vote NO NO NO NO — Ofishallie, Wed Jul 22 17:39
scared — mc, Sat Jul 18 08:33
- Medical coverage — Offishallie, Sat Jul 18 13:31

my appointment... — Theresa, Wed Jul 15 22:48

Theresa -- appointment — Offishie, Thu Jul 16 10:11
- Theresa --supplements — Offishallie, Sat Jul 18 04:51
- - re: supplements — Theresa, Sun Jul 19 11:02

Semiannual Checkup A++ — Offishie, Tue Jul 14 08:25

Re: Semiannual Checkup A++ — Jo, Fri Jul 17 04:12
Yay! — Theresa, Wed Jul 15 22:56
- Theresa -- Yo Yo Depression — Offishallie, Thu Jul 16 09:44
Re: Semiannual Checkup A++ — Afton, Wed Jul 15 02:19
congrats — for ofishallie, Tue Jul 14 21:59
- Re: congrats — maria, Thu Jul 16 04:00

Seeing Dr. Korson tomorrow... — Theresa, Mon Jul 13 22:36

Mark Korson, M.D. — Cindy Le Mons, Tue Jul 14 19:47
good luck! — Afton, Tue Jul 14 03:45

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

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

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