Kidney Stones Support Group

I am sorry to here about your son, He's to young for this. First off let me tell you I also have cystinurea and have had stones over the last 30 years.When you say your son has had surgery, do you mean they are cutting? If so find another doctor. There are so many options out there now. I have had over 30 procedures done over the years and no open surgery's.
Enough about me. Thiola works for some people and is worth a try, there is also pharmaceutical (Cuprimine, Depen) They are all scary drugs. Unfortunately none worked for me. Have they told you to try and stay away from Methionine?

Hello kszrt and thanks for your reply!

His first couple surgeries where open surgeries. He had been forming stones for a long time with no symptoms so the stones were very large. He has scars on his back on both sides.
All other surgeries have been done without incisions - with the "scopes".

What is Methionine?

Methionine is an amino acids (protein) that is in just about everything but some food more than others. The older I get the more foods I learn to stay away from. Ham is the big one and large amounts of any red meat. Some nuts also. Cystinuria is not common and a lot of doctors never see it. Where are you from? I have had a few doctors before O hooked up with a guy at MGH in Boston. I have had so many "fishing" trips my ureter has been stretched. I passed 3/8" stone a month ago. without missing a day.

I really feel for your son mine didn't start till I was 21.You need to find a good Pediatric Nephrologest. I know it wont be easy.



Together with cysteine, methionine is one of two sulfur-containing proteinogenic amino acids. Its derivative S-adenosyl methionine (SAM) serves as a methyl donor. Methionine is an intermediate in the biosynthesis of cysteine, carnitine, taurine, lecithin, phosphatidylcholine, and other phospholipids. Improper conversion of methionine can lead to atherosclerosis.

kszrt,

We live in Wisconsin. My son sees a pediatric urologist from Childrens' Hospital in Milwaukee WI. Before that we lived on the west side of the state so he was seeing a pediatric urologist from Childrens' Hospital Minneapolis/St Paul MN. That is where he had the "open" surgeries.

I have cystinuria and have been taking thiola for nine years (since I was ten). It was the best thing I ever did. I have only had two surgeries. They will have to check his blood often to make sure of his white cell blood count. If he gets sick like throwing up his blood vessels may burst. That is the only bad side effects I have had. I still form stones but not nearly as often. I was scared when I first started taking them. I am on the max dosage at this point. You might be afraid to put him on it but I havent suffered from the really bad side effects at all.

Thanks for your reply carlin724.

What do you mean about blood vessels bursting? that sounds very bad!

Thiola thins your blood very badly. It also kills white blood cells. That is why they will test his blood once every two weeks for about six months. It just causes my blood vessels to burst in my face or if I get my blood pressure taken it does it on my arm. The blood just surfaces underneath the skin depending on how bad determines how long it will stay. It can get pretty scary looking. So, if you decide to put your son on the medication and it happens. Don't be alarmed it will go away in a few days. I have had kidney stones since I was 7 but it took them three years to diagnose me. I went to Vanderbilt Children's Hospital in Nashville.

Thanks for your reply carlin! My son was forming stones for quite some time before he was diagnosed also. By the time he was diagnosed, he already had many large stones in both kidneys to the point were they were blocking and causing damage to the kidneys! He had to have major surgery where they went in through incisions in his back to remove them. It was terrible! He has had 8 surgeries to remove stones in the last 4 years!! Most have been with the scope so no more incisions, but still this is so terrible. What a terrible disease!

He has started on the Thiola yesterday. The doctor is bumping him up slowly from 200 to 500 mg per day. Week one he takes 2 pills a day. By week four he will be taking 5 pills a day.

I really hope this works... with little or no side effects!!!

I take 10 pills a day. I was on 12. But my doctor decreased it because it was making my blood count low. I am 19 and I have had it since I was 7. It is horrible. My stones have been removed through an incision in my back. I have had two surgeries and hope I wont have to have any more. They also put me on Sodium Bicarbonate to help the pH level. All together I am on 17 pills a day. I still have stones form but not as often. I wish your son the best. I can honestly say I know how he feels.