8yr old twin identical daughter just diagnosed with CD
Thu, October 08, 2015 3:01 PM
My daughter started getting sick 8 months ago and we suspected something was wrong. Both she and her twin sister were on feeding tubes from birth to about 3 yrs old, and then their Mic-Key buttons were removed and they were stitched up. Clean bill of health. We found out a few weeks ago that she has Crohn's and this has devastated us. It's an emotional roller coaster. To watch your child's quality of life plummet from a once vibrant personality is heartbreaking. Worse, she's been diagnosed with advanced Crohn's, and the Dr (who is very well-respected the area's medical community) is treating it aggressively, Right now it's all overwhelming to process this for my wife and me..
She now ha a tube in her where she once had her previous Mic-Key button, is on a 1200ML/day PediaSmart feed, with a 100-200 calorie allowance of real food. The diet is strict and it is very difficult to keep her at that range, but she's been gaining weight steadily and was on Prednisone. However, while her bathroom runs went from 10 a day to 2 a day, they are started to go back up sometimes 3 - 4 times a day - but the stool is starting to look more normal. Still, the Dr is fairly certain she'll need Remicade. We were advised of the risks and we are frightened to think how that will impact her life. She started to feel better emotionally over the last few weeks since she started the tube feed and is participating in life again - but we're concerned what's going to happen over the long-term.
In light of this, we were told she'll most likely need surgery 3-5 years. On top of that, her twin sister has a 30% chance of having CD as well. I keep telling myself one day at a time. I pray for some miracle that she won't need to go the Remicade route because of the severity of her CD.
lkaplan1170Joined Sep 3, 2015
Sun, October 18, 2015 9:10 PM
Reply posted for lkaplan1170.
I am sorry to hear what your family is going thru. Our family has experienced similar as one of our daughter's was dx w/CD @ 4. We thought our world was turned upside down! One thing for sure there is a huge learning curve and it will take lots of time and patience to gain a good understanding of what all of this means.
So far as remicade, we have been fortunate and have not had to go that route. I understand you feel good about the dr. you are working with, but you may want to seek a second opinion before taking the big step of immuno-supressive meds.
As for the dr. making such predictions yrs. before expected surgery, take that with a grain of salt. Drs aren't always right and you should do everything you can to stay in the present like you said, one day at a time.
Though our girl was so young when she was diagnosed, she is now 15 and has been in remission for many years (knock wood). She is athletic, smart and very caring. I've always taught her Crohns does not define who she is, it is just a very small part of her. We've been involved with annual walks to raise money and Liz has attended Camp Oasis for a number of years, I highly recommend it, but there is an age min., I think it's 10.
Please, stay positive and strong for your family and know you are not the first family this has happened to, there are many of us here and we can help, if only as a sounding board.
Joined Sep 9, 2009
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