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Paediatric Crohns and kidney stones
My daughter 13 was recently diagnosed with crohns and was on prednisone for 8 weeks and is on Azathioprine. Within this period she has developed kidney stones and within weekly scans more are appearing.
I am told by the Gastro IBD team this is uncommon for paediatrics and is not related to the medication. Does anyone have any experience in this area or who can direct me to contacts for advice.
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Hello @npleyland, I can understand your concern and wanting to get some answers. Hopefully members with experience can respond. Mayo Clinic does have some information on Individualized care for pediatric kidney stones - https://www.mayoclinic.org/medical-professionals/pediatrics/news/individualized-care-for-pediatric-kidney-stones/mac-20568954. I also found this short video that may be helpful.
You mentioned your daughter is being seen by a Gastro IBD team. Have they discussed any follow up testing?
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3 ReactionsHi thanks for this and we have surgery in 5 weeks to remove a stent and stone in one kidney so expect there will then be discussions about additional tests to monitor. My biggest concern is whether there is a link to her Crohn’s disease or her crohns medication that is causing the stone formation as they appear to be forming quite quickly in a period where we are supposed to be nearing crohns remission
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3 ReactionsHas she had a PTH test? It would check her parathyroid hormone level.
With Crohn's disease, she may have had issues with nutrient malabsorption, particularly calcium and vitamin D. Longstanding deficiencies of either can cause secondary hyperparathyroidism.
If she has elevated PTH, they'd likely put her on calcium and D to see if that brings PTH down. (And alleviates the stone formation!) Or they might do a parathyroid scan.
Sometimes, if deficiencies of calcium or D have been an issue for years, the parathyroid glands will become enlarged and overproduce PTH. This leeches calcium from her bones and might cause her to have really high calcium in her blood, even though she's not absorbing it well from her diet.
My Dr has had me on 50,000 units of vitamin D for years. My calcium levels are fine but the is always high.
Chrons with Lupus means food is never My friend.