Baby diagnosed with IBD
Sat, June 16, 2012 9:25 PM
Anyone else out there with a baby diagnosed with IBD (less than 12 months old)? Looking for anyone who can share experience/wisdom from the patient/parent point of view. We are in the midst of figuring out if this is Crohn's or Ulcerative Colitis.
Joined Jun 16, 2012
Fri, June 22, 2012 9:29 AM
Reply posted for Lizzies Mom.
Thank you "Lizzies Mom" ! It took 3 whole months for our baby to be diagnosed and that seemed like an eternity, cannot imagine 4 years. Luckily, in a way, it just got so bad I took her to the ER and forced the issue. Plus I think my lack of sleep finally made me crazy enough to pull all the stops. You are right, this is so rare in babies and that makes me think that any way we can all share info on treatment options etc. would be great.
It is very encouraging to hear that a kid can lead a normal life through it all.
Joined Jun 16, 2012
Thu, June 21, 2012 9:03 AM
Reply posted for Arica.
My daughter was sick from infancy too, unfortunately, IBD isn't commonly diagnosed in infants, so she was misdiagnosed/hospitalized a number of times prior to being diagnosed at age 4. As a parent, that time of my life was like a never ending rollercoaster ride. Prior to her diagnosis, she had been very, very sick and some of the docs, including her pediatrician weren't receptive to me. When she was eventually diagnosed, I was initially overwhelmed, however, that feeling quickly became one of relief. At least we knew I wasn't crazy and that we had a diagnosis, we knew what we were dealing with.
That was eight years ago. I am happy to tell you she is doing wonderfully! Happy, active, good student, gymnast, and very, very spirited! She is one tough cookie. I could go on an on with my experience, but due to the limited space given here, I can't. If you ever want to communicate with questions, concerns or just to bend an ear, you can email me at lizziesmom@ymail.com I may not have all the answers, nobody does, but I have a different perspective than the doctors, after all, I'm like you, a parent.
God bless -
Lizzies Mom
Joined Sep 9, 2009
Wed, June 20, 2012 6:14 PM
Reply posted for Arica.
I don't have a child diagnosed with IBD, but from the point of view that I do have family that has Crohn's, the best advice I can give is to become an advocate for your baby and yourself. It helps when the topic of surgery or anything else comes up. Prayers for you and your family that you will find out what is wrong with your child.
crohnscaregiverJoined May 25, 2012
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