Hi there, very excited to be a part of this group. My son was diagnosed with Dents Disease which is a CKD and very rare. Approximately 250 families diagnosed in the US. We see a nephrologist a few times a year and as you all know...It is alot of pressure to make sure you are doing what's best for your child's health. Can't wait to read everyone's stories.
New to the group!: Hi there, very... - Parents of Childr...
New to the group!
Written by
Samhan
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AHP2018NKF Ambassador
Welcome to the group! My daughter also had a rare genetic disease called primary hyperoxaluria before having her combined kidney and liver transplant 11 years ago. She is now 12. I see that Dents Disease is also part of the Rare Kidney Disease Consortium researched through the Mayo Clinic. Are you involved with its patient advocacy group? dentdisease.com/ How old is your son? How is he doing? How can I help you?
My son is 2. He was diagnosed just before his 1st birthday. Our last nephrology appointment was in July and his kidney function was great. He's probably the youngest diagnosed with this disease so he's obviously at stage 1. Unfortunately he's on blood pressure medication for hypertension but they're not sure why he has it. He's also very anemic so he's on an oral iron supplement as well.
Have you found other parents with kids with the same illness? That may be very helpful for you - I know it was for me given the rarity of my daughter's disease. What does treatment look like? And will he need a transplant down the road or can it be managed without?
I have found a few other families with the disease, yes. And it's very helpful. Right now there is no treatment. But sooner or later he will be alot more susceptible to kidney stones and kidney transplant is possible in his future. Praying he doesn't have to go through that. I've been having a hard time with the diagnosis since we found out it is only genetic and came from me (I'm a carrier) and I didn't even know it. Me and braxtons biological grandparents are currently waiting on genetic testing for ourselves to see which side of my family it came from and then start gathering our family history since that is really important. No one in my family is aware of any kidney problems.
I'm so sorry! I completely relate. My husband and I are both recessive carriers to our daughter's illness. Our older daughter is completely unaffected (thankfully!) so our younger daughter's diagnosis really took us by surprise. I'm glad you are finding other people to talk to, and that you are looking at the genetics. I am here to help you along the way. Hang in there!
Thank you so much. Are you from the US?
Yes, you?
Yes from Nebraska. I think it's neat seeing where everyone is from so maybe we can meet sometime. Kids with rare illnesses seem to amaze me.
Welcome!
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