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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ibs [ irratable bowl — marta, Thu Sep 25 12:43

potassioum — marta, Mon Sep 15 16:59

Marta and Potassium — Ofishallie, Wed Sep 24 17:47
- for ofishallie — marta, Thu Sep 25 00:26

the runs — marta, Sat Sep 13 13:41

low white blood count — marta, Fri Sep 12 00:07

Educating Med. Students — Ofishallie, Wed Sep 10 01:42

costipation — marta, Thu Sep 11 11:59

bowel movments — marta, Tue Sep 9 23:14

Constipation — Ofishallie, Wed Sep 10 01:30
- for ofishialli — marta, Thu Sep 11 12:12

infetion — marta, Mon Aug 25 22:10

Marta Infections — Ofishallie, Tue Aug 26 10:09
- for ofishallie — marta, Tue Aug 26 16:25
- - Marta — Ofishallie, Wed Aug 27 01:18
  - - Seizures — Kathy, Thu Aug 28 20:49
    - - Kathy-seizures — Ofishallie, Thu Aug 28 21:51

Yahooieee Disability — Ofishallie, Thu Aug 21 01:21

Waiting for results.. — Afton, Thu Aug 21 00:42

results.. — Afton, Fri Aug 22 03:50
- Tomorrow is the day... — Afton, Thu Aug 28 02:18
- - Afton my heart is with you — Ofishallie, Fri Aug 29 11:28
- Re: results.. — maria, Tue Aug 26 02:58
- The dreaded Phone call — Clare, Sun Aug 24 06:12
- thanks for the kind words x — Afton, Sun Aug 24 02:01
- - infetion — marta, Mon Aug 25 23:07
- Afton results — Ofishallie, Sat Aug 23 23:47
- So sorry — Jo, Sat Aug 23 02:25
- Oh no!! — CindyB, Fri Aug 22 08:47
- - baby loss — colleen, Tue Sep 9 21:26
for afton — marta, Thu Aug 21 12:01
- thanks for the prayers! — afton, Fri Aug 22 01:06
- - for afton — marta, Fri Aug 22 13:38
Afton Results — Ofishallie, Thu Aug 21 01:13

sodium benzoate and buphynel — marta, Wed Aug 20 18:50

You, Sodium Benz, Retention — Ofishallie, Thu Aug 21 01:35
Marta Sodium Benz and Buphynel — Ofishallie, Thu Aug 21 01:10
- for ofishallie — marta, Thu Aug 21 11:57
- - Marta — Ofishallie, Thu Aug 21 12:30

glucose — marta, Fri Aug 15 23:30

need help — marta, Mon Aug 4 23:45

RE: need help Marta — Ofishallie, Wed Aug 6 00:58
- for ofishallie — marta, Thu Aug 7 01:10
- - Marta — Ofishallie, Thu Aug 7 10:59
  - - for ofishallie — marta, Fri Aug 8 18:52
    - - Re: for ofishallie — maria, Sat Aug 9 02:39
      - for maria — marta, Sat Aug 9 13:03
        
        Re: for maria — maria, Sun Aug 10 04:04
        
        for maria — marta, Sun Aug 10 22:26
      - Marta — Ofishallie, Fri Aug 8 23:40
Re: need help — Clare, Tue Aug 5 16:13

Tremors, Twitches and Seizures (Marta too) — Ofishallie, Mon Jul 28 16:16

for ofishallie — marta, Tue Jul 29 00:43
- Marta — Ofishallie, Tue Jul 29 01:25

To Afton — maria, Wed Jul 23 02:44

Re: To Afton — Anonymous, Thu Aug 7 00:39
- Re: To Afton — maria, Sat Aug 9 02:34

need adive about mickey button — marta, Wed Jul 23 01:03

Insurance Coverage for Arginine — oliphint4, Tue Jul 22 09:49

Insurance Coverage — Pat, Thu Jul 24 13:33
- insurance covarage for pat — marta, Fri Jul 25 01:04
- Thanks — Jamie Oliphint, Thu Jul 24 14:02
Arginine — Ofishallie, Wed Jul 23 14:48
- argenine for ofishallie — marta, Thu Jul 24 01:00
argenine for oliphint4 — marta, Tue Jul 22 13:46
- arginine — oliphint4, Tue Jul 22 22:22
- - argenine for oliphint4 — marta, Wed Jul 23 00:58

itching for ofishallie — marta, Mon Jul 21 16:10

Topic 7/20: Itching and Rashes — Ofishallie, Mon Jul 21 00:00

itching — Annette, Fri Jul 25 23:32
- Annette -- Itching — Ofishallie, Sat Jul 26 15:44
- for annete — marta, Sat Jul 26 00:17
- - creams — Annette, Sat Jul 26 00:42
to Ofishallie — Kathy, Mon Jul 21 22:05
- Kathy and Itching — Ofishallie, Tue Jul 22 08:37
- for kathy rash — marta, Mon Jul 21 22:46
- - Kathy & Marta Itching — Ofishallie, Tue Jul 22 09:24
itching — mindy, Mon Jul 21 07:15
- for mindy — marta, Mon Jul 21 15:59
- - arginine — mindy, Tue Jul 22 08:19
- Itching - Mindy ARGinase Deficiency — Ofishallie, Mon Jul 21 11:02
- - hands/arginine — mindy, Tue Jul 22 08:17
  - - for mindy — marta, Tue Jul 22 13:38
    - - to marta/protein needs — mindy, Wed Jul 23 07:26
      - to mindy protien foods — marta, Thu Jul 24 00:52
        
        Re: to mindy protien foods — Anonymous, Fri Jul 25 08:36
        
        protien foods — Anonymous, Sat Jul 26 00:08
        
        Lo pro foods — Kathleen R. Sproatt, Tue Jul 29 21:58
    - Hands/arginine — Ofishallie, Tue Jul 22 08:43
for ofsishalie — marta, Mon Jul 21 00:55

Supplements that are suppose to help.... (long) — Ofishallie, Thu Jul 10 14:02

offshallie — Anonymous, Fri Jul 11 08:51
- Re: offshallie — Clare, Tue Jul 15 08:25
- - pleaseread — Anonymous, Wed Jul 16 08:25
  - Re: offshallie — Anonymous, Wed Jul 16 08:22
  - - ASA/AG — Clare, Thu Jul 17 08:03
    - - to clare — mindy/anonymous, Thu Jul 17 12:30
      - Re: to clare — Clare, Fri Jul 18 05:15
  - to clare — marta, Wed Jul 16 00:46
  - - Re: to clare — Clare, Wed Jul 16 05:17
    - - for clare — marta, Wed Jul 16 12:35
      - For Clare — Ofishallie, Thu Jul 17 10:26
        
        Re: For Clare — Clare, Fri Jul 18 05:35
        
        Re: For Clare — maria, Fri Jul 18 19:54
        
        GOS — Clare, Sat Jul 19 08:41
        
        Re: GOS — maria, Mon Jul 21 03:14
        
        for mairia — marta, Sat Jul 19 00:54
        
        Re: for mairia — maria, Mon Jul 21 03:02
        
        RE: for Clare — Ofishallie, Fri Jul 18 11:08
- supplements — Ofishallie, Fri Jul 11 11:16
- - to offshallie — Anonymous, Sat Jul 12 00:25
  - - tremors — marta, Sat Jul 19 18:26
    - Annon and everyone — Ofishallie, Wed Jul 16 09:44
    - - Re: Annon and everyone — maria, Thu Jul 17 07:04
      - for maria — marta, Thu Jul 17 23:10
        
        Re: for maria — maria, Fri Jul 18 19:32
        
        for maria — marta, Sat Jul 19 00:45
        
        Re: for maria — maria, Mon Jul 21 02:54
        
        Marie re OTC — Ofishallie, Thu Jul 17 10:07
        
        Re: Marie re OTC — maria, Fri Jul 18 19:21
        
        Maria OTC living it — Ofishallie, Fri Jul 18 20:11
        
        Re: Maria OTC living it — maria, Mon Jul 21 02:36
        
        Re: Maria OTC and living with it — Ofishallie, Mon Jul 21 10:19
        
        Re: Maria OTC and living with it — maria, Wed Jul 23 02:41
        
        RE Marie OTC and Living with it — Ofishallie, Thu Jul 24 04:53
        
        Re: RE Marie OTC and Living with it — maria, Fri Jul 25 05:34
        
        Re: Maria OTC and living with it — maria, Wed Jul 23 02:39
        
        ofishallie — marta, Sat Jul 19 01:14
        
        Marta — Ofishallie, Sat Jul 19 12:12
        
        for ofishallie — marta, Sun Jul 20 00:37
    - tremors and anonymous — Ofishieallie, Sat Jul 12 01:12
    - - ornithine — Anonymous, Mon Jul 14 00:03
      - Ornithine Hey Your EMAIL Give Permanent Failure — Ofishallie, Thu Jul 17 10:10
        
        my email — Anonymous, Thu Jul 17 12:31
        
        ornithine — ofishallie, Wed Jul 16 09:52
  - ofishallie tremors — marta, Fri Jul 11 13:44
  - - tremors and headaches — Ofishallie, Fri Jul 11 15:46
    - - tremors for ofishallie — marta, Sat Jul 12 00:34

dizzness — marta, Mon Jul 7 14:12

Re: dizzness — maria, Tue Jul 8 04:07
- dizzeness for maria — marta, Tue Jul 8 18:55
- - to marta — Maria, Wed Jul 9 12:34
- I am so dizzy my head is spinnin — Ofishallie, Tue Jul 8 10:19
- - Re: I am so dizzy my head is spinnin — Maria, Wed Jul 9 12:19
  - - dizzness — marta, Thu Jul 10 00:07
    - - Re: dizzness — Maria, Fri Jul 11 07:17
      - Maria — Ofishallie, Fri Jul 11 18:55
        
        Re: Maria — maria, Sat Jul 12 18:39
        
        Maria — Offishallie, Sat Jul 12 20:32
        
        Re: Maria — maria, Mon Jul 14 05:25

UCD testing in Australia — Afton Bianchi, Sun Jul 6 03:33

Re: UCD testing in Australia — Jo, Thu Jul 10 00:46
- Re: UCD testing in Australia — Jo, Thu Jul 10 00:50
Testing — Pat C., Mon Jul 7 14:23
- thanks Pat — Afton, Tue Jul 8 00:35
- Pat C -- Testing — Ofishallie, Mon Jul 7 17:21
- - Testing & Conference — Pat C., Mon Jul 7 17:47
  - - Testing and Conference — Ofishallie, Tue Jul 8 10:07
    - - Seizures & barometric pressure — Kathleen R. Sproatt, Wed Jul 9 21:36
      - Seizures — Ofishallie, Wed Jul 9 22:42
        
        Continued to Ofishallie — Kathleen R. Sproatt, Thu Jul 10 22:26
        
        Ofishallie re seizures — Kathleen R. Sproatt, Thu Jul 10 22:17
        
        Kathleen and Daughter — Offishallie, Mon Jul 14 12:07
        
        sezizuers for kathleen — marta, Fri Jul 11 01:13
        
        To Marta — Kathleen R. Sproatt, Fri Jul 11 22:16
        
        to kathleen — marta, Sat Jul 12 00:45
        
        to Marta — Kathy, Sun Jul 13 21:32
        
        for kathy — marta, Mon Jul 14 01:02
Prenatal Testing — CindyB, Mon Jul 7 07:58
- Re: Prenatal Testing — Afton, Tue Jul 8 00:30
- - Re: Prenatal Testing — Maria, Tue Jul 8 04:00
  - - for maria — Afton, Wed Jul 9 00:31
    - - Re: for maria — Maria, Wed Jul 9 11:47
      - Re: for maria — Afton, Thu Jul 10 00:47
for afton — marta, Sun Jul 6 17:52

ostiopina — marta, Sat Jul 5 15:05

osteopenia — Annette, Sun Jul 13 01:25
Osteopenia — Ofishallie, Sun Jul 6 12:40
- for ofishalie — marta, Sun Jul 6 17:44
- - Marta — Ofishallie, Mon Jul 7 17:17
  - - for ofishallie — marta, Tue Jul 8 01:37
    - - Marta — Ofishallie, Wed Jul 16 23:27
      - Re: Marta — maria, Thu Jul 17 06:57
        
        for ofishallie — marta, Thu Jul 17 00:27
        
        Marta --Tension Headaches — Ofishallie, Thu Jul 17 10:32

Help in School — karen, Wed Jul 2 13:38

School Issues — Pat C., Mon Jul 7 14:31
help in school — marta, Wed Jul 2 14:02
- Help in School — karen, Wed Jul 2 14:41
- - help in school — sandra, Thu Jul 3 16:29
  - - for sandra — marta, Fri Jul 4 00:34
    - - autism — barb, Mon Jul 7 15:57
  - for karen — marta, Thu Jul 3 12:33

infection by mickey button — marta, Mon Jun 30 12:47

mickey button — marta, Thu Jun 26 14:01

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