Hi I'm the mom of a 16 yr old girl who was diagnosed with a rare metabolic disorder called a urea cycle disorder when she was 4 yrs old. This does not allow her body to eliminate the waste (ammonia) from metabolized protein. We have managed this fairly well with diet, medication, and hospitalizations. When she went through puberty, Crohn's disease was triggered, so her medical care is even more difficult. The metabolic issue would not allow us to start with steroid treatment, so we started Remicade infusions. She has done well with this treatment, but after 2 1/2 yrs, we have had to hospitalize her for several viral infections. The body uses more protein when stressed, so the elevated blood ammonia is frightening. This can lead to coma or death. Right now, we are in the hospital battling this scenario and it is day 7. You can imagine the frustration. We rely heavily on our faith to get us through these tough days.
-
Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.
Chronic kid
- Thread starter Smpaxton
- Start date
nogutsnoglory
Moderator
I'm sorry that you and your daughter are facing these health battles. IBD is truly a family affair. I hope that the hospital will be able to make her feel better and find the appropriate treatment path.
- Location
- Vancouver,
Just wanted to say hi and welcome! :welcome:
Sorry about having to go through all these challenges. But, this is a great place to be for support and information! I encourage you to check into our forum wiki, parents of kids with IBD section and our chat room as well. Let us know if we can answer any questions. We'll do our best to help. Take care. :ghug:
Sorry about having to go through all these challenges. But, this is a great place to be for support and information! I encourage you to check into our forum wiki, parents of kids with IBD section and our chat room as well. Let us know if we can answer any questions. We'll do our best to help. Take care. :ghug:
:ghug:
Sorry to hear about your Dd.
We do have a parents group if you need somewhere to vent .
http://www.crohnsforum.com/forumdisplay.php?f=49
WELCOME
Sorry to hear about your Dd.
We do have a parents group if you need somewhere to vent .
http://www.crohnsforum.com/forumdisplay.php?f=49
WELCOME
Hi and welcome to forum
I'm so sorry to hear about what your daughter
And you are going though.
I hope your daughter feels better soon x c
I'm so sorry to hear about what your daughter
And you are going though.
I hope your daughter feels better soon x c