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Medullary Sponge Kidney Disease (MSK) Community
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son's diagnosis

My son is 14 and was diagnosed with MSK this week. He woke up to his 1st stone on his 14th birthday 2 months ago. The pediatric urologist & pediatric nephrologist have been great and answered a lot of questions. I don't think I could ask for better care for him. It's been tough wrapping our heads around it all. We've been told to cut out all soda, definitely no caffeine ever, and to have him eat as low sodium diet as possible- basically home make everything. Then drink lots of water & take potassium citrate 3x daily. She said those things would help dissolve the stones he currently has & keep others from forming. Anyway, reading the posts made me cry thinking what's in store for him. I'm so thankful for his understanding caring doctors. I'm wondering if anyone else was diagnosed this young? If so, how are you doing as an adult? Also, has anyone else tried the treatment we are doing? Thanks!
7 Responses
Avatar universal
It makes me happy to see that someone has found doctors who understand.  It took 10 years for a urologist to finally say what my daughter had.  She is now 23 and it has been quite a struggle for her.  One of the worst things for her is that she started developing urinary tract infections that never seem to go away.  It makes her pretty miserable.  I would like to tell you that if your son has not had an infection, then try to do all you can to make sure he doesn't get them.  My daughter didn't get them at first but when she started, they added to the misery.  I don't mean to scare you, I just want to share our experience.  Seems like you are getting good advice, so try to stress the importance of compliance with your son.  Take care.
Avatar universal
I'm 37 and was diagnosed 4 years ago. I had my 1st kidney stone at age 13. I just wanted to make you both aware of our support group on Facebook. We currently have 203 members, and we share ideas, things that work & things that don't, and offer support to each other thru our daily struggles. It's a wonderful group full of extremely supportive people.
Avatar universal
Thanks so much!  I've already liked a page called "Medullary Sponge Kidney"  on Facebook but don't see any discussion on it.  How might I access what you are talking about.  
Avatar universal
It sounds like your son has been fortunate to find doctors who understand his condition and can help him manage his MSK.  I first began having symptoms as a child with repeated UTI's.  I was diagnosed with MSK in my mid 30's.  I began a low fat, no sodium, low protein diet and only drink water or green/herbal tea with the occasional indulgence of a very, very weak latte.  This is coupled with a daily diuretic tablet and 3 monthly blood tests.  I''m now 64 and have not produced/passed any stones for over 10 years.  I attribute this to finding an excellent GP who monitors my kidney function routinely, a healthy diet, lots of fluid combined with the diuretic to speed the elimination proces.  That has worked for me, however you should heed the advice of your doctors who will have tailored an appropriate program for your son.  What I did want to assure him and you of is that even though I suffered multiple kidney stone attacks, infections and hospitalisations in my younger years prior to the right combination of diet/medication, it is possible to manage MSK and lead a full, healthy, active life.  I also have 3 family members with MSK which would tend to add weight to the theory of a genetic predisposition.  They are all well managed and have had the benefit of early diagnosis like your son.  Each has slightly different medical regimes but all adhere to the same diet and regular monitoring a
Avatar universal
Thank you so much for your post.  I have a daughter with MSK who has been suffering and your post stresses the importance of strict dietary measures and finding a good doc.   It gave me a lift just reading your story and I've been pretty depressed about the whole thing, so thank you for that.
Avatar universal
I'm very pleased my email has helped.  The main thing is to lower your son's salt intake, reduce his protein intake and drinks lots - sensible, healthy eating that everyone should be doing anyway.  The other piece of Mum advice I'd pass on, especially as the mother of 3 adult sons and 4 grandsons, don't turn this into a 'big deal' for him.  He's only young so occasionally he's going to break out and have a burger & fries like his friends.  That's OK, as long as it's not every day!  It's a condition that's easily managed and after a while he'll forget he's got it.  If he also forgets to look after himself then he'll eventually be back in the ER with a kidney stone attack.  He'll quickly learn that good food has it's rewards but it doesn't mean his life has to be a misery of never eating out again, it's just learning to choose the right things on the menu and asking the chef to not add salt when preparing it.  Food actually tastes better once you get used to it without salt.  If he can't avoid salt altogether, learn to choose the low salt options from the menu. Good
Avatar universal
Sorry Barb,  it's your daughter with MSK, not a son.  Please accept my sincere apologies.  I got the reply to your post mixed up with Jaredsmum2 who's son was also diagnosed.  Good luck to both young people in the future - and keep drinking water!  
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