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New Diagnosis of Pediatric IBD

  • When your child is first diagnosed it's overwhelming.  It's scary.  It's a brand new world that you have no idea about.  The good thing is, is that we're here for you.  There's nothing that can happen that can't be dealt with.  I know from personal experience.  Our diagnosis was pretty awful.  It was pretty scary and we were going downhill fast, but the good thing is there's so many resources, whether it be medication resources or support resources.  You can go to very reputable websites to educate yourself such as crohnsandcolitisfoundation.org., where you can learn about medications you can learn about Camp Oasis.  You can learn about the specific research that the Crohn's and Colitis Foundation is doing all over the world.  There's other websites such as Improve Care Now which Boys Town is a part of where you can go and actually learn about the parent, patient, clinician and researcher, everything that goes together and learn exactly what parents are doing.  Learn exactly what patients are doing and actually hear from patients themselves.  See what researchers are doing and all the amazing new research that's coming out as well as the clinicians and everything they're putting out there and they share all their information freely.  There's also a great resource called smartpatients.com.  Now this is one of the few reputable chatrooms you could say that has threads going on that is safe to go into.  Improve Care Now has a thread inside smart patients where you are free to ask any and every question and it will get answered as long as long as it's non-medical.  So if you do have a medical question, it's best to just go straight to your doctor and get that answered.   


Pediatric IBD Pediatric Gastroenterology

 

 

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