Parents and Caregivers

Sibiling Heartbreak

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Joined: April 22, 2013

Posted: Apr 22, 2013 1:41 AM

My son is 16.  He has had Crohn's Disease for 5 years now.  He has suffered terribly because each therapy or treatment seems to fail him. We are all trying to be strong for him through this difficult time.  He is experiencing another exacerbation, and we have exhausted nearly all treatment options.   My daughter is 9 and is absolutely heartbroken that her brother has to be in pain.  She cleans the bathroom so he "wont catch any germs", she makes sure he drinks water and reminds him to take his medicine.  She gives him cold packs for his head and warm packs for his stomach while he is lying on the couch or in bed.  She even wrote a letter to Santa last year asking for her brother's Crohns to be taken away.  She prays every night, and I just had to finish putting her to bed as she cried herself to sleep.  Being heartbroken myself about my son, how do I support my daughter in dealing with her brother's diagnosis and her heartbreak for what he has to go through?  She is just now realizing the permanency of the disease, and I was wondering how other families deal with this dilemma.  Thanks!

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Joined: April 15, 2013

Posted: Apr 24, 2013 9:14 PM
 Reply posted for bny4max.

If you have not yet found a successful treatment, perhaps you should seek out the highest authority in the field who is within a reasonable distance of your home. That usually means the head of the pediatric GI department at a medical school.

You can find such a person by going to the US News Top Doctors Web site. In the "specialist" window, type in Pediatric Gastroenterologists, along with the rest of the requested information. A list of the most highly regarded specialists in your area will pop up in a few seconds. Here is the Web address:

Good luck and God bless,

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lizzies mom

Joined: September 09, 2009

Posted: Apr 24, 2013 2:10 PM
 Reply posted for bny4max.

I can relate to what your family is going thru.   My little one was 4 when she was dx, her sister is 4 years older.  I recommend talking to a social worker to see how to proceed.   For us, we had a social worker that is in our gastro gi's office and it was helpful to talk with her.  We have learned as a family to accept IBD and join in on the walks as a family every year (it has been 9 years now) and is a "tradition" of sorts now. L iz goes to Camp Oasis too.   What I've learned over the years is that yes this is a "chronic" condition, but to live each day fully.   It has to be especially tough when her sibling isn't feeling well, hopefully once the right combo of meds, diet, etc. kick in and he improves and gets into "remission" things will be better.   In the meantime, it sounds like his little sister is doing all the right things, and she is a beautiful / empathetic person.   These are all good traits to have.  You may even want to check in to see if there are any support groups in your area.   It was helpful initially for us because prior to going we didn't know anybody else who had Crohns.   It wasn't until 2 years ago that I was dx too (after years of symptoms), but that is a totally different story.  Let's face it, as parents we all want what's best for our children, we are all heartbroken, but we can't change it, so I always say when you are given lemons, Make Lemonade!   Good luck to you and your family.         

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