My 14 yr old son is very sick!

[jonette5]

Can anyone help me? My 14 yr old son is going to have to have surgery on his left kidney in 2 weeks. He has Cystine Kidney stones. He has two in the tract between the kidney and bladder (they are stuck)one is about the size of a chili bean, the other about half that size. He has one in his kidney the size of a nickle. This is an heriditary disease called Cystinuria. Has anyone ever heard of it? the doc wants to put him on a medicine to help control these stones (it is a life long problem)but everything I read on the different meds is pretty bad. Lots of bad side effects. Anyone ever know a child on these meds......Captopril....Tiopronin....Penicillamine. ...Potassium Citrate? These are the different drugs used for this problem. Any info anyone has would be soooooo greatly appreciated!

Thanks so much!

[reneep45]

i don't know about it , just giving you a (((((hug)))))
hope someone can help !

[cherish328]

Your best bet is to go to Wal-Mart (it's cheaper there) and buy you a book, called "The Pill Book" that is my bible! I paid $4.88 for mine, if you would like, I can make photocopies, of the drugs that you are wanting info on and send it to you. Just let me know! My e-mail is in my signature line.

[catssass]

This site looks like it has alot of information......
http://www.cystinuria.org/

[jcw]

Lots of hugs and good wishes for you and your son

[odyssey]

{{{{{{{{{{{{ jonette5 asn son}}}}}}}}}}}}}

I wish I knew how to help.
let me know if I can send a get well card to your son.
[email protected]

[kelblend]

A good place to read about side effects of certain drugs is www.rxlist.com . I'm sorry you son is going through this :0(
(((jonette5 & son))) Wish I could be of more help to you.

[Widgetsx3]

{{{{Hugs for you and DS}}}}}}} try www.webmd.com type in the search feature...you can type in the disease and meds...it will bring up tons of info

[captorquewrench]

if you dont want to buy the pill book metioned above, check your library to see if they have a PDR (physician's desk reference) you can also buy them at a good bookstore.

have you tried doing a keyword search on each drug name and /or finding online support groups especially for people with the conidition he ask so you can ask there?

(((((((((hugs)))))))) to you and your son

[mesue]

Every drug has side effects, some more than others. Talk to your pharmacist and find out which one has the least really bad side effects. Also how long each one has been on the market and which one he reccomends. Pharmacist knows more about drugs than doctors.

[annie169]

Cystinuria is a rare disorder that results in excretion of the amino acid cystine into the urine, often causing cystine stones to form in the urinary tract.

Symptoms usuall start between ages 10-30. Usually the first symptom is intense pain caused by a spasm of the ureter where a stone becomes lodged. Blockage of the urinary tract by stones may result in urinary tract infections and kidney failure

Treatment consists of preventing cystine stones from forming by keeping the concentration of cystine in the urine low. A person with cystinuria must drink enough fluids to produce at least 8 pints of urine each day. Another treatment approach involves making the urine more alkaline by taking sodium bicarbonate and acetazolamide. Cystine dissolves more easliy in alkaline urine than in acidic urine.

Penicillamine reascts with cystine to keep it dissolved. ****HOWEVER, about half of all people who take penacillamine develop adverse effects such as fever, rash or joint pains.*****


Hope this helps!!

[mlathroum]

Did they say what kind of surgery? I had patients who were heading for Kidney Stone surgery. They had them "blasted". The way I understood it they put them in a big bathtub and used a lazer or something and it made the kidney stone break apart. The patients
thought it was better that actually having invasive surgery.

[jonette5]

Thanks so much for all of your help and hugs. The people on this site are just the best!

[Tasha405]

{{{jonette & son}}}

[annie169]

In response to mlathroum, the procedure you're talking about is extracorporeal shock wave lithotripsy...Yeah, big word!!

"After an ultrasound device or fluoroscope is used to locate the stone, the lithotritor is placed against the back and sound waves are focused on the stone, shattering it. Then the patient drinks fluids to help flush the stone fragments out of the kidney."

Also, I found out that Potassium citrate is used to make the urine more alkaline so the stones dissolve gradually. But larger stones that are causing an obstruction may need to be removed surgically.

The laser procedure sounds like to me, that it does not break up the cystine stones in the ureters, but stones that are in the kidney's themselves. Also, most kidney stones are from calcium buildup, not cystine buildup.

I think the doctors are trying to use a noninvasive method to take care of jonette's son's stones.

[seawinds]

(((((Hugs for you & son))))))

[jonette5]

Thanks again for all your help and hug!

As for the "blasting" procedure...unfortunatly it won't help my son as cystine stone will not break up. The procedure they are going to do is like the "basket" retrieval except it is with a brand new device just on the market. The basket can only get stones that are low in the tract but this new one can bend and go up high all the way into the kidney. They "HOPE" this will work on him...if not they will have to make incision in his back and go through it to get stones from tract and kidney.

What I really want to know is if anyone has had any of the drugs I mentioned or knows anyone who takes them and how they reacted to them. I have been doing tons of research on them and cannot find anything about children taking them. All of the web sites...chats ...etc.. I find just seem to be adults with the problem. Clues anyone? I am open to all suggestion!
Thanks so much for all of the support!

[justinenycole26]

{{{{{Jonette5}}}}} Hope your son is better soon !

[mesue]

What about contacting the pharmacy and see what companies make these drugs and then find their website and email them and ask about what studies have been done on children taking these drugs, ask for copies if they will give them to you.

[heartlvrs]

http://www.angelwinks.net/images/gw3.gif

[jonette5]

GREAT idea mesue. Never thought of that! THANKS!

[NASCAR38]

I have Polycystic Kidney Disease And MSK ( medullary sponge Kidneys ) I have Stones About every 2 months :mad: I stay in the Hospital About as Much as I Stay home .. I know what it's like To have Kidney problems I Will Stay a prayer For your Son If you Ever Want to Talk Just Email me Anytime [email protected] ..

[Barbi_Route66]

(((jonette & son))) I don't know much about your son's condition but I pray that he will get better soon.

Hugs & prayers to you both,

Barbara