Crohn's Disease Forum » General IBD Discussion » Undiagnosed 11yo daughter - frustrated


05-12-2016, 10:34 AM   #1
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Undiagnosed 11yo daughter - frustrated

Hi all. I'm new to this and am not sure that I'm even posting in the right place. I'd appreciate some advice for what I should be asking (or even just how to be patient though this process.)

My daughter is 11.5 and I've been concerned that she hasn't been growing for quite a while now. She has always had a poor appetite but was fine on her growth curve for her first few years (60% height, 25% weight at age 5). Since then it has gradually slipped. I should also say that we are all tall, no one in the family is under 5'9", except one aunt who is 5'8"?! At the age of 7 she started having kidney stones. It has happened 5 times (once with an actual stone, other times with lots of blood in the urine - crippling pain etc). We've been to nephrology at the Children's Hosp in Hartford and they've never been able to identify any sort of renal "reason" for the stones. As of today her growth curve is now at 26% height and 3% weight. Her pediatrician has not been responsive to my concerns. Nephrology says "we've ruled out the scary stuff" so we'll just wait until there is another stone. They have no comment on the growth issue. To date all of the doctors have been focused on "ruling things out" rather than finding a reason. I feel like I've been watching her not grow for 3 years (her 9 year old sister has passed her in height and weighs 25lbs more.)

My friend is an endocrinologist and is familiar with her chronic poor appetite. She believed it to be GI so we've started with a GI at Yale. I should also say that my daughter has chronic canker sores and a father with PSC. I've had chronic canker sores my whole life, diarrhea since my 20s. Had my gallbladder and appendix out in my 20s. Ditto for my sister and mother. Also, my 9yo daughter does not have the growth issues but has had regular painful urgent diarrhea for a couple of years now. Two years ago Children's did minimal testing and gave me a pamphlet for IBS for her. In the past 6 months it has ramped up so I've also got an appt for her scheduled (But that's another thread.) The new GI doc was very responsive in that he was the first to say "Yes there is an issue and we need to identify and treat it." He mentioned CD. When I questioned that she's never had diarrhea (though she does have constipation) he replied that FTT and kidney stones are sometimes a tip off for CD. He ordered a fecal calprotectin and wanted us to keep a close food diary, try to increase her calories (but I've been doing that for 11 years?!) and we'd likely scope her in mid summer.

Calprotectin just came back from Quest at normal, 62.5. And I can't believe that I'm disappointed. I guess that I was hoping that a higher number would push us to scope her sooner. And I guess I was hoping that a high number would indicate we were on the right track. So now I'm back to the food diary for 7 weeks. I'm so anxious about the growth. Watching your child not grow does a number on a parent. And it is even more frustrating that the world sees a skinny girl and says "She looks terrific" when as a mother I know I'm not crazy. (At least I hope not.)

Sorry so long. I do feel good that I've finally found a physician who is taking my concerns seriously and that we have a path. I just want to know right now...this minute...so we can start working on getting her healthy and back on track.

Any advice for what I should be asking would be helpful. Many thanks!
05-12-2016, 10:50 AM   #2
ronroush7
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We have a great section called Parents of Kids with IBD. You might want to post there. I am also going to tag Clash, my little penguin
05-12-2016, 10:52 AM   #3
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Join Date: May 2016
Location: Connecticut
Will do, thanks!
05-12-2016, 10:56 AM   #4
ronroush7
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You are welcome.

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