Guest guest Posted September 7, 2005 Report Share Posted September 7, 2005 Hello all!! This is Jaydeen again. Mom to Devin, 7 months old. I was wondering if anyone has any experience with kidney problems. Devin had an ultrasound done and both of his kidneys are swollen. They are going to look into reflux and duplicate collecting system. Just wondering if anyone had any knowledge that they could pass on.Thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2005 Report Share Posted September 8, 2005 Renal anomalies can be see in children who have CHARGE Syndrome. If you go to the CHARGE Syndrome foundation homepage and look up diagnostic criteria you can scroll down to " other characteristics " to find urinary tract and/or renal anomalies defined as " Small, absent, horseshoe or ectopic kidney, hydronephrosis or reflux, some ureteral anomalies. " Do you have the CHARGE Syndrome management manual? You can get that through the Foundation. Look up the CHARGE Syndrome Foundation Homepage and go to resources available. You'll find the information there. It provides tons of information about almost everything. Within it are sections for parents as well as sections for physicians and professionals. With that you will know what to look for before a problem occurs. My daughter didn't have her bladder and kidneys diagnosed until she was older. Because she no longer got fevers and didn't show signs of pain and illness often her bladder infections went unnoticed. This was damaging to her more severe kidney. Her good kidney has now taken over for the bad one. But if we had known to look earlier there might not have been so much damage. Patty took antibiotics as a prophylactic. I think it was microdantion but I'm not sure. Good luck with all of this. We'll be thinking of you. Bonnie, mom to a 22, Patty CHARGE 20, and wife to Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2005 Report Share Posted September 8, 2005 kydney reflux is quite common in chargers i my self havent had it but i have a larger one and have had numerous uti infictions hes looking more like a chaerger everyday:) ellen ps how have the other tests gone or the progress > > Hello all!! This is Jaydeen again. Mom to Devin, 7 months old. I was > wondering if anyone has any experience with kidney problems. Devin had > an ultrasound done and both of his kidneys are swollen. They are going > to look into reflux and duplicate collecting system. Just wondering if > anyone had any knowledge that they could pass on.Thanks > > > > > > > Membership of this email support groups does not constitute membership in > the CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org. For CHARGE Syndrome Canada > information and membership, please visit http://www.chargesyndrome.ca, or > email info@.... > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at > www.chargesyndrome.org <http://www.chargesyndrome.org> or by calling > 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2005 Report Share Posted September 9, 2005 Hi Jaydeen, My daughter, MacKenzie has several kidney issues. She has hydronephrosis of her left kidney and scar tissue there from a very bad UTI. She has high bloodpressure from Renin, which is produced in the kidneys and also hypercalceria, which predisposes her to stones. Most recently she has come up with high potassium levels, probably caused from her diurectic.Most of these issues haven't caused any major problems,yet, but she is monitored very closely. Jeanie Colp mom to MacKenzie 7 CHARGE, Tyler 13 & Zachary 11 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2005 Report Share Posted September 10, 2005 yes its good to do tests for things like these to > > Hi Jaydeen, > > My daughter, MacKenzie has several kidney issues. She has hydronephrosis > of > her left kidney and scar tissue there from a very bad UTI. She has high > bloodpressure from Renin, which is produced in the kidneys and also > hypercalceria, which predisposes her to stones. Most recently she has come > up with high potassium levels, probably caused from her diurectic.Most of > these issues haven't caused any major problems,yet, but she is monitored > very closely. > > Jeanie Colp > mom to MacKenzie 7 CHARGE, Tyler 13 & Zachary 11 > > > > > Membership of this email support groups does not constitute membership in > the CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org. For CHARGE Syndrome Canada > information and membership, please visit http://www.chargesyndrome.ca, or > email info@.... > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at > www.chargesyndrome.org <http://www.chargesyndrome.org> or by calling > 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2005 Report Share Posted September 20, 2005 In a message dated 07/09/2005 18:55:45 GMT Standard Time, kjlad5@... writes: Hello all!! This is Jaydeen again. Mom to Devin, 7 months old. I was wondering if anyone has any experience with kidney problems. Devin had an ultrasound done and both of his kidneys are swollen. They are going to look into reflux and duplicate collecting system. Just wondering if anyone had any knowledge that they could pass on.Thanks Hi, Sorry I'm so late in replying to this. I meant to reply ages ago but as usual I didn't quite manage it. I'm another lurker at the moment Anyway, my son Jack has kidney problems. He had vesicoureteral reflux which was only discovered when he was around 18mths old and only after I had insisted he had a MCUG (VCUG In USA) after hearing advise on the listserv from Cheryl Swenson. He was asymptomatic but he had grade 3 and grade 1 reflux. He was then put on prophylactic trimethoprim to prevent infection. We then discovered quite by chance a couple of months later that he had bilateral staghorn kidney stones.This was discovered when he had an abdominal x-ray for something else.This has been his biggest kidney problem and is still ongoing. To date he has had 2 percutaneous nephrolithotomies to remove stones and 8 episodes of lithotripsy (ESWL). He is going back to Sick Kids, Edinburgh on 3rd October for another percutaneous nephrolithotomy which we are not looking forward to. He is on a low salt, high fluid diet (he is tube fed) and still takes trimethoprim for prophylaxis but they don't have any answers as to why he keeps forming stones. The stones grow large and that is why they have to keep removing them. If they were small they would just leave them alone as long as they were not causing pain etc. Jack's vesicoureteral reflux has now resolved so at least that is one less problem. He also has a high calcium:creatinine ratio. Also, due to the reflux and kidney stones his left kidney is very badly scarred and has little function. The right has some scarring too and slightly reduced function. It is very important to have our kids thoroughly screened for renal problems as if they are left untreated they may cause kidney failure in later life. All the best Elaine, mum to Elise (13yrs) & Jack (8yrs) CHaRGE Scotland Quote Link to comment Share on other sites More sharing options...
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