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second opinion?


Tue, October 01, 2013 3:40 PM

Our daughter was diagnosed with Crohn's 8 months ago. Every time we think she has achieved remission, something else comes up. She's been in the hospital twice because of medication side effects and cdiff complications. Currently her main medication is remicade. I'm just curious whether other parents have accepted the diagnosis and treatment plan or insisted on a second opinion? It's hard to know if we're doing the right things and all that we can to help; so far it feels like we've been failing miserably. We like her doctor, but her doctor recently talked about putting our daughter on a similar medication she was on previously and ended up in the hospital. The doctor forgot she was on this, which was more than a little upsetting to us as we had been stressing about it for days before her appt. Does anyone have any suggestions or advice about whether to get a second opinion?

FPO daybyday
Joined Oct 1, 2013

Wed, October 02, 2013 3:59 PM

 Reply posted for daybyday.

You aren't failing miserably, you are good parents wanting the best for their child.  The same as the rest of us.   My daughter was dx w/cd very young, she was 4 and we have the best pedi gi working with us and we still sought the advice of a specialized children's hospital just to do a case review and give the second opinion.  Unfortunately the dx was correct.   That was 9 years ago.   Liz is now 13 and doing wonderfully.   Working with a nutritionist was very positive.  Eating smaller / more frequent meals with safe snacks inbetween helps her digest better and now get overwhelmed.  Doctors are professionals who know second opinions are always an option and they respect that.   In the long run this could give you a small piece of mind knowing the dx and treatment plan are precisely what another high ranking doc would recommend.   Good luck to you and your family.,  It is a difficult time but you will come out at the end even stronger.. Hang in there.

FPO lizzies mom
Joined Sep 9, 2009

Tue, October 01, 2013 10:32 PM

 Reply posted for arica.

Thank you so much for your reply. It was really reassuring to hear; not that I'm happy to hear you have had the same experience(s) with doctors remembering medications but that we are not the only ones and need to continue to advocate for our daughter. Thank you again and best of luck to you and your family.

FPO daybyday
Joined Oct 1, 2013

Tue, October 01, 2013 7:50 PM

 Reply posted for daybyday.

It can never hurt to get a second opinion.  All it takes is some of your time.  In my experience most doctors I have encountered are not really good at remembering medications, complications with meds, other conditions that the patient may have, etc.  At the risk of being a nag I always remind my daughters GI Dr. of all the medications she takes and anytime her ENT or Pulmunolgy Dr. prescribe a new drug I have them all talk to each other.  Just to be safe.
Can never be over cautious, question everything and every professional involved in the care of your child.

FPO arica
Joined Jun 16, 2012

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