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[Momama]

hi, I am a mom of a 26 yo who has dRTA-a little scared for his future but hoping for the best. If anyone has good recipes I would love if you can share. Trying to get him to understand the severity of this diagnosis has been toughest challenge so far....and the fact that there are not too many people with this! (I stumbled on this site while searching for info-hopefully others will also...)

[Butterflies0720]

I’m so sorry to hear of your little one’s diagnosis. This is a tough disease, made even more challenging due to the rarity. I too stumbled across this when I had been searching to find other people with dRTA. There is actually a Facebook group “Renal Tubular Acidosis” that I joined and they are a very active, supportive group. There are quite a few parents with children with dRTA on there that I think would really be able to help you out with recipes and other questions. Or even to just be able to read other people’s questions, problems, and answers; it just helps to feel like you’re not alone. Hope this helps!

[Momama in reply to Butterflies0720]

Thank you so much! I will look for the FB group. My son actually just turned 26 on Tues! I kind of wish we knew about this diagnosis back when he was a kid-I think it might have been a little easier to have him adapt to the dietary changes when he was younger. Right now I am battling with trying to convince him of how serious this is.......very difficult! Luckily he still lives with me so at least I can try to help change his diet/outlook on this disease. (it is not just drink the fluids and take the meds which is what he thinks it is!) Thanks for the help!

[Butterflies0720 in reply to Momama]

Oops, I missed the “2” before the “6” apparently, but the group really is great for parents of ones with the disease and for ones struggling with it themselves. It’s certainly not to be taken lightly, and having a scary health crisis is certainly not the way to have your eyes opened as to how delicate the balance is. As you mentioned, it’s more than drinking fluids & taking your meds. I hope the group gives you support and some helpful tips. I think I spent a whole day reading through the posts and comments when I joined ~ so helpful! Best wishes to you and your son!

[Momama in reply to Butterflies0720]

Thanks so much! I found the FB group and requested to join. Hopefully once I am able to read I will be able to convince my son to join-although kids his age don't do FB as much-I really would like him to find someplace and someone else who is dealing with what he is!