My Grandson 4yrs Old
Wed, June 09, 2010 12:00 AM
Just found out today he has Crohn's. Feeling paniced -- what should be the first thing you do to cope?
Joined Jun 9, 2010
Fri, July 23, 2010 2:49 PM
Reply posted for STroxell.
I second the suggestion about Breaking the Vicious Cycle (breakingtheviciouscycle.info and pecanbread.com). My five year old was diagnosed with juvenile arthritis around 2 years old, but shes always had GI issues. We finally got a doctor to believe us when we said something was not right. She was diagnosed with ulcerative colitis last March.
It took me a while to get her (and me) started on the Specific Carbohydrate Diet, but were approaching one month now and shes had amazing improvement since the end of week one. I am so thrilled. I dont know if the inflammation is down, but shes having near normal bowel movements for the first time in her life! I asked her the other day if she wanted to continue on the diet because I want this to be her decision (with encouragement from me, of course) and she said yes, because her tummy no longer hurts. I realized when she said that that she hasnt complained of belly pain in a few weeks, and she doesnt look as bloated as she was before the diet.
We were told last week if we can get her UC under control, the arthritis and uveitis will stay quiet too. I am hopeful this diet is the answer Ive been looking for since the arthritis diagnosis, and we hope to wean her down or off her weekly injections soon.
The diet takes a lot of work, but it is so worth it to see my daughter feeling better. I am doing the diet too and have never felt this well in a long time. I had ongoing abdominal pain that doctors couldnt explain and its gone. I kept my appointment with a gastroenterologist today even though the pain is gone and he said the area Im complaining about is usually an indication of irritable bowel syndrome or Crohns. He said if the pain returns, I should get a colonoscopy, but if its gone, well just wait. I had the dull pain for several years, but it became worse in the last six months and since starting the diet, its gone.
jamomJoined Feb 3, 2010
Fri, June 11, 2010 12:00 AM
Reply posted for STroxell.
Lizzie's Mom gave you some great advice. Be supportive. Learn. Don't criticize when your kids are making tough choices for your grandchild. You all want the same thing - as healthy, normal life as you can get for him. I think there isn't a parent or grandparent on this forum that doesn't wish they could have the illness instead of the child.
My daughter was diagnosed with juvenile arthritis at 3 and crohn's at 6. We have had a bumpy road but like Lizzie's Mom said, I think some of the difficulties we have faced have made my daughter an even more tough, wise, funny, resilient, empathetic, beautiful child and I wouldn't trade her for the world. The first weeks and months for your family will contain a lot of trial and error to figure out what works and they will need your support now more than ever.
We have had some difficulties with my in-laws thinking they can "fix" her problems by telling us what we should be doing without first asking what we are doing or trying to understand the diagnosis. So your genuine interest and love (which is already apparent) for your family will be the best medicine they could ask for and need. Be gentle with your advice while they try to navigate the first few months - they are definitely overwhelmed.
We are all in the same boat and happy to share our experiences - which differ widely - in hopes that they will help another family.
Take care-
Claire's Mom
Joined Jul 20, 2009
Thu, June 10, 2010 12:00 AM
Reply posted for STroxell.
My daughter was the same age when she was diagnosed with cd (she is now 10). I think the best thing any in-law could do is take deep breathe and do your best to relax. Let them know you are there if they need you ..... whether it be help out with other children while they are at a doc appt, hospital, etc., make dinner, laundry, housework, whatever you can do you will be happy to help. Do this in a kind offeratory manner and not pushy way. ***Be aware they are riding a huge emotional roller coaster and don't mean to be short with you if they seem that way.** You may want to make the suggestions given here on this site, but don't become the "expert" and try telling ...... that will only cause problems. Unfortunately, there is a lot that your grandson and his parents will go through and eventually the never-ending merrygoround will stop and the pieces to the puzzle will come together and life will become more "normal". It will never be what it was, but it can be great. I have always taught my daughter you are not defined by this disease, you define it! She is a beautiful, active girl who loves gymnastics and has a compassion that I feel was only enhanced by having a "special belly". It will all come together, they are very lucky to have such a caring grandparent. Best wishes,
Lizzies Mom
Joined Sep 9, 2009
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