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Dealing with a Child's Diagnoses

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Posted 10/3/2017 8:23 AM (GMT 0)
My daughter just turned 6 this Sep. She was diagnosed with Chron's two months before. Every day is a challenge for her and us. She has started to believe that there is something wrong with her and that's why she can't live like other children. Her eczema and astigmatism make things worse. The medicines are not really helping. She has to rush to the toilet at least 7 times a day. She has gotten so thin that you can see her bones through her skin. We are all so new to this and want to help her live as normally as possible. Please help. She is taking Pentasa and omniparazol. Please help. It breaks my heart to see her so tired and weak all the time and feeling like she is not like the other kids. She keeps asking us why can't she just be fully well and why did God give her something like this when she is such a good child.

Post Edited (Momforever) : 10/13/2017 11:31:28 PM (GMT-6)

Posted 10/3/2017 3:55 PM (GMT 0)
Hi Mom and welcome!

I am so sorry to hear about your daughter's dx. This is of course so very difficult for you all. sad

The good news is that there is superior treatment and understanding in managing an AI disease now than previously. So her hopes of living as healthy and normal a life as possible are very good.

With time and learning what works to keep her feeling well, things will get easier.

Do you have a support group for her yet? This will be important for her to have peers to relate with. Asking her gastro team and/or the hospital that you work with could help facilitate this and other connections.

For your own anxiety as a carer...please see our Resources at the top of the main forum page here for great material to work with. Practicing the suggested exercises daily will make a big difference in how you feel.

Keep posting whenever you need support/encouragement. We will be here.

Scaredy Cat
Posted 10/3/2017 4:21 PM (GMT 0)
Pentasa isn't strong enough for Crohn's; it's an outdated medication, but some GIs still prescribe it anyway. And omniparazol is for GERD/acid reflux, which will do nothing whatsoever for Crohn's inflammation.

Ask the GI about other medication, e.g. 6MP or azathioprine. Or, even better, biologics such as Remicade or Humira. But also, please do some research into enteral nutrition and Crohn's. If I was a mother with a young child with Crohn's, that's probably the first thing I'd consider. Your daughter shouldn't be given steroids except as a last resort, as they can hinder growth in children.

Finally, I suggest posting on the Crohn's board as well, to get more suggestions and hopefully support from other parents who have children with Crohn's. And please keep on telling your child that it's NOT her fault and she hasn't been bad in any way: a 6 year old shouldn't have to learn what an unfair place the world is, but sadly some of them do.
Posted 10/14/2017 5:28 AM (GMT 0)
Thank you for your words of encouragement and wisdom. We have an appointment with her gastroenterologist next week. In the meantime, I am reading up all the information I can from books and also from the Internet. I have also spoken to a few people who have Chron's themselves (but they were all diagnosed in adulthood) but I am yet to speak to someone with a child as young as mine who has been diagnosed. I also came to know that kids who are diagnosed pretty early tend to sink into depression in their adolescence. So I am keeping my daughter motivated all the time and have told her that we all have different bodies with different needs, etc. So far, she is taking it well. Just hoping that she manages to live with it in a healthy manner forever.
Posted 10/14/2017 9:49 PM (GMT 0)
Let us know how her appointment goes. While true, the majority of AI diseases do not manifest until adolescence or adulthood...some, such as type 1 diabetes can be triggered as young as the toddler years.

Perhaps you can find a support group for kids affected by AI issues in general, if you can't find others her age with Crohn's.

Remember to continue your own anxiety management regimen...and keep posting for encouragement.

S.C.
Posted 10/15/2017 3:20 AM (GMT 0)
keep strong.
Posted 10/31/2017 11:38 AM (GMT 0)
I'm so sorry that your family is going through this. When I read this I thought if a woman on Instagram who's username is "lilsipper". She has Chris's also. She has many tips for treating Chron's like diet and recipes. She has gotten herself much better and has gained weight back. I have also seen her on the doctor's tv show. I hope this helps.
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