Guest guest Posted January 18, 2004 Report Share Posted January 18, 2004 Dear Kerry, ADVICE I don’t have. I am very anxious to see responses because I have had this problem with Leanna this last 2 weeks. She has never had a problem before, except she always seemed to have a huge bladder. She used to go 8 hours or more without urinating and then she would go. I was never concerned, except this last month she had a crisis from a sinus infection, where she was week, not talking much,ataxic, sleeping lots and not herself. This is exactly what happened to Samya, except she just kept getting worse and less than 2 months later was dead. As you can imagine, we got really scared. I took her to her Genetics doctor and he started her on Arginine, and as awful as it is, she took it. She improved quicky with energy, endurance, balance, and everything. In just 2 weeks, she was about 80% back. Only one problem, as she improved, she started to not urinated for 12 hrs. or more. She lost the sense to urinate, never had to go and would only go by chance by me constantly telling her to try. Frustrating as hell. After about 5 dayss of this, I called the doctor and he said she probably developed a neurogenic bladder as damage from the crisis. I took her that day to the urologist who agreed, cathed her and told me to go home AND cath her for as long as I have to, I was devastated. He showed me once, and said this may be forever. Thank God, the next day she urinated. I have not had to Cath her once. She still has the problem, but I keep telling her to try, although she does not feel the need, eventually she urinates enough so I have not had to cath. She is back in school, but on Friday, went more than 12 hrs, but finally did it. The ultra sound of kidney and bladder were also normal. I hope she ventually regains the sense. She seems to be regaining it, and is old enough to understand that she must sit and try or be cathed. I am confused and frustrated like you, and would appreciate any advice. OOOOOH the things people take for granted!! I never ever thought the ability to feel like I will pee on myself was a gift, and yet it is. Thanks, Suhad Haddad, Mom to Samya (Died 12-10-02 of Leigh's Synd.) & Leanna with same disease. Samya's Memorial Site: www.Samya.org Email: Suhad1970@... Alt Email: Suhad@... AiM Chat: Suhad1970 From: kerry.tobin@... Sent: Sunday, January 18, 2004 10:12 AM To: Mito Subject: Urine Retention??'s Hello: I remember a few months ago we had some discussions on Urine Retention (Kass your daughter had just gone to the MD). Anyway, Hailey is 4 yrs & Brenna 2 yrs last month they were both in the hospital with the Flu. Hailey went 26 hr before any urine output and had 300 cc's. Brenna was cathed at 25 hrs and had 410 cc +. They both used to do this only during illness or heat. Now within the past 2 months Brenna is doing it more and more. Yesterday she went 22 hrs before going. We have done the bladder scans at the urologist. Our last appt in October we were told we need to straight cath Brenna 2x's per day, then while the MD was writing up the orders Brenna had a wet diaper and the MD told us " see you in 1 yr " . Very drastic change in just a few minutes. As of Friday the nurse in urology said we are to straight cath both of them if they go longer than 12 hr with out urine output. She also scheduled them for a urodynamics testing. Can anyone tell me more about this test?? At this point I don't think the urologist is being very proactive or helpful. It seems to be our wonderful metabolic MD that is helping us out and concerned over their bladder issues. Both girls have had ultra sounds and all looks normal on the scans. Any input or opinions on this issue would be great. Thanks for listening! Kerry Plymouth, MA Hailey 4 yrs Mito & FOD Brenna 2 yrs Mito & FOD Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2004 Report Share Posted January 18, 2004 Dear Kerry, ADVICE I don’t have. I am very anxious to see responses because I have had this problem with Leanna this last 2 weeks. She has never had a problem before, except she always seemed to have a huge bladder. She used to go 8 hours or more without urinating and then she would go. I was never concerned, except this last month she had a crisis from a sinus infection, where she was week, not talking much,ataxic, sleeping lots and not herself. This is exactly what happened to Samya, except she just kept getting worse and less than 2 months later was dead. As you can imagine, we got really scared. I took her to her Genetics doctor and he started her on Arginine, and as awful as it is, she took it. She improved quicky with energy, endurance, balance, and everything. In just 2 weeks, she was about 80% back. Only one problem, as she improved, she started to not urinated for 12 hrs. or more. She lost the sense to urinate, never had to go and would only go by chance by me constantly telling her to try. Frustrating as hell. After about 5 dayss of this, I called the doctor and he said she probably developed a neurogenic bladder as damage from the crisis. I took her that day to the urologist who agreed, cathed her and told me to go home AND cath her for as long as I have to, I was devastated. He showed me once, and said this may be forever. Thank God, the next day she urinated. I have not had to Cath her once. She still has the problem, but I keep telling her to try, although she does not feel the need, eventually she urinates enough so I have not had to cath. She is back in school, but on Friday, went more than 12 hrs, but finally did it. The ultra sound of kidney and bladder were also normal. I hope she ventually regains the sense. She seems to be regaining it, and is old enough to understand that she must sit and try or be cathed. I am confused and frustrated like you, and would appreciate any advice. OOOOOH the things people take for granted!! I never ever thought the ability to feel like I will pee on myself was a gift, and yet it is. Thanks, Suhad Haddad, Mom to Samya (Died 12-10-02 of Leigh's Synd.) & Leanna with same disease. Samya's Memorial Site: www.Samya.org Email: Suhad1970@... Alt Email: Suhad@... AiM Chat: Suhad1970 From: kerry.tobin@... Sent: Sunday, January 18, 2004 10:12 AM To: Mito Subject: Urine Retention??'s Hello: I remember a few months ago we had some discussions on Urine Retention (Kass your daughter had just gone to the MD). Anyway, Hailey is 4 yrs & Brenna 2 yrs last month they were both in the hospital with the Flu. Hailey went 26 hr before any urine output and had 300 cc's. Brenna was cathed at 25 hrs and had 410 cc +. They both used to do this only during illness or heat. Now within the past 2 months Brenna is doing it more and more. Yesterday she went 22 hrs before going. We have done the bladder scans at the urologist. Our last appt in October we were told we need to straight cath Brenna 2x's per day, then while the MD was writing up the orders Brenna had a wet diaper and the MD told us " see you in 1 yr " . Very drastic change in just a few minutes. As of Friday the nurse in urology said we are to straight cath both of them if they go longer than 12 hr with out urine output. She also scheduled them for a urodynamics testing. Can anyone tell me more about this test?? At this point I don't think the urologist is being very proactive or helpful. It seems to be our wonderful metabolic MD that is helping us out and concerned over their bladder issues. Both girls have had ultra sounds and all looks normal on the scans. Any input or opinions on this issue would be great. Thanks for listening! Kerry Plymouth, MA Hailey 4 yrs Mito & FOD Brenna 2 yrs Mito & FOD Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2004 Report Share Posted January 18, 2004 Suhad: I hope you will also be able to find some answers. Also, wanted you to know I have often gone to Samya's website and think you did a wonderful job with it in helping others know her and your family. Kerry suhad1970@... wrote: Dear Kerry, ADVICE I don’t have. I am very anxious to see responses because I have had this problem with Leanna this last 2 weeks. She has never had a problem before, except she always seemed to have a huge bladder. She used to go 8 hours or more without urinating and then she would go. I was never concerned, except this last month she had a crisis from a sinus infection, where she was week, not talking much,ataxic, sleeping lots and not herself. This is exactly what happened to Samya, except she just kept getting worse and less than 2 months later was dead. As you can imagine, we got really scared. I took her to her Genetics doctor and he started her on Arginine, and as awful as it is, she took it. She improved quicky with energy, endurance, balance, and everything. In just 2 weeks, she was about 80% back. Only one problem, as she improved, she started to not urinated for 12 hrs. or more. She lost the sense to urinate, never had to go and would only go by chance by me constantly telling her to try. Frustrating as hell. After about 5 dayss of this, I called the doctor and he said she probably developed a neurogenic bladder as damage from the crisis. I took her that day to the urologist who agreed, cathed her and told me to go home AND cath her for as long as I have to, I was devastated. He showed me once, and said this may be forever. Thank God, the next day she urinated. I have not had to Cath her once. She still has the problem, but I keep telling her to try, although she does not feel the need, eventually she urinates enough so I have not had to cath. She is back in school, but on Friday, went more than 12 hrs, but finally did it. The ultra sound of kidney and bladder were also normal. I hope she ventually regains the sense. She seems to be regaining it, and is old enough to understand that she must sit and try or be cathed. I am confused and frustrated like you, and would appreciate any advice. OOOOOH the things people take for granted!! I never ever thought the ability to feel like I will pee on myself was a gift, and yet it is. Thanks, Suhad Haddad, Mom to Samya (Died 12-10-02 of Leigh's Synd.) & Leanna with same disease. Samya's Memorial Site: www.Samya.org Email: Suhad1970@... Alt Email: Suhad@... AiM Chat: Suhad1970 From: kerry.tobin@... Sent: Sunday, January 18, 2004 10:12 AM To: Mito Subject: Urine Retention??'s Hello: I remember a few months ago we had some discussions on Urine Retention (Kass your daughter had just gone to the MD). Anyway, Hailey is 4 yrs & Brenna 2 yrs last month they were both in the hospital with the Flu. Hailey went 26 hr before any urine output and had 300 cc's. Brenna was cathed at 25 hrs and had 410 cc +. They both used to do this only during illness or heat. Now within the past 2 months Brenna is doing it more and more. Yesterday she went 22 hrs before going. We have done the bladder scans at the urologist. Our last appt in October we were told we need to straight cath Brenna 2x's per day, then while the MD was writing up the orders Brenna had a wet diaper and the MD told us "see you in 1 yr". Very drastic change in just a few minutes. As of Friday the nurse in urology said we are to straight cath both of them if they go longer than 12 hr with out urine output. She also scheduled them for a urodynamics testing. Can anyone tell me more about this test?? At this point I don't think the urologist is being very proactive or helpful. It seems to be our wonderful metabolic MD that is helping us out and concerned over their bladder issues. Both girls have had ultra sounds and all looks normal on the scans. Any input or opinions on this issue would be great. Thanks for listening! Kerry Plymouth, MA Hailey 4 yrs Mito & FOD Brenna 2 yrs Mito & FOD Please contact mito-owner with any problems or questions. Yahoo! Groups Links To visit your group on the web, go to: http://groups.yahoo.com/group/Mito/ To unsubscribe from this group, send an email to: Mito-unsubscribe Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service. Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2004 Report Share Posted January 18, 2004 Suhad: I hope you will also be able to find some answers. Also, wanted you to know I have often gone to Samya's website and think you did a wonderful job with it in helping others know her and your family. Kerry suhad1970@... wrote: Dear Kerry, ADVICE I don’t have. I am very anxious to see responses because I have had this problem with Leanna this last 2 weeks. She has never had a problem before, except she always seemed to have a huge bladder. She used to go 8 hours or more without urinating and then she would go. I was never concerned, except this last month she had a crisis from a sinus infection, where she was week, not talking much,ataxic, sleeping lots and not herself. This is exactly what happened to Samya, except she just kept getting worse and less than 2 months later was dead. As you can imagine, we got really scared. I took her to her Genetics doctor and he started her on Arginine, and as awful as it is, she took it. She improved quicky with energy, endurance, balance, and everything. In just 2 weeks, she was about 80% back. Only one problem, as she improved, she started to not urinated for 12 hrs. or more. She lost the sense to urinate, never had to go and would only go by chance by me constantly telling her to try. Frustrating as hell. After about 5 dayss of this, I called the doctor and he said she probably developed a neurogenic bladder as damage from the crisis. I took her that day to the urologist who agreed, cathed her and told me to go home AND cath her for as long as I have to, I was devastated. He showed me once, and said this may be forever. Thank God, the next day she urinated. I have not had to Cath her once. She still has the problem, but I keep telling her to try, although she does not feel the need, eventually she urinates enough so I have not had to cath. She is back in school, but on Friday, went more than 12 hrs, but finally did it. The ultra sound of kidney and bladder were also normal. I hope she ventually regains the sense. She seems to be regaining it, and is old enough to understand that she must sit and try or be cathed. I am confused and frustrated like you, and would appreciate any advice. OOOOOH the things people take for granted!! I never ever thought the ability to feel like I will pee on myself was a gift, and yet it is. Thanks, Suhad Haddad, Mom to Samya (Died 12-10-02 of Leigh's Synd.) & Leanna with same disease. Samya's Memorial Site: www.Samya.org Email: Suhad1970@... Alt Email: Suhad@... AiM Chat: Suhad1970 From: kerry.tobin@... Sent: Sunday, January 18, 2004 10:12 AM To: Mito Subject: Urine Retention??'s Hello: I remember a few months ago we had some discussions on Urine Retention (Kass your daughter had just gone to the MD). Anyway, Hailey is 4 yrs & Brenna 2 yrs last month they were both in the hospital with the Flu. Hailey went 26 hr before any urine output and had 300 cc's. Brenna was cathed at 25 hrs and had 410 cc +. They both used to do this only during illness or heat. Now within the past 2 months Brenna is doing it more and more. Yesterday she went 22 hrs before going. We have done the bladder scans at the urologist. Our last appt in October we were told we need to straight cath Brenna 2x's per day, then while the MD was writing up the orders Brenna had a wet diaper and the MD told us "see you in 1 yr". Very drastic change in just a few minutes. As of Friday the nurse in urology said we are to straight cath both of them if they go longer than 12 hr with out urine output. She also scheduled them for a urodynamics testing. Can anyone tell me more about this test?? At this point I don't think the urologist is being very proactive or helpful. It seems to be our wonderful metabolic MD that is helping us out and concerned over their bladder issues. Both girls have had ultra sounds and all looks normal on the scans. Any input or opinions on this issue would be great. Thanks for listening! Kerry Plymouth, MA Hailey 4 yrs Mito & FOD Brenna 2 yrs Mito & FOD Please contact mito-owner with any problems or questions. Yahoo! Groups Links To visit your group on the web, go to: http://groups.yahoo.com/group/Mito/ To unsubscribe from this group, send an email to: Mito-unsubscribe Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service. Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2004 Report Share Posted January 19, 2004 Thanks for all the info Kass. Let us know how the appointment in March goes. Kerry Kass wrote: Hi Kerry :-) Sorry to hear about the urinary problems over there!! Totally understand how concerning they are. I admit I am taken a little off guard how quickly the urologists seem to be advising the cathing!! Mostly because even with Madison's history and testing we're trying some less invasive ways of getting some control over the problem, and the cathing is a way to introduce infection (like Alison's ), something I know we're all trying to avoid. I realize that our next visit with the urologist may end up with us having to cath Madison, but admit to being relieved that we've had a chance to find some less invasive way to deal with it. I thought I'd share what we're doing here in case it might help someone dealing with this....it atleast might be worth a try. Should say, this would likely not be an effective way to deal with it during a crises situation, but for the child having "day to day" trouble. In Madison's case, the VCUG and Urodynamics show she is holding twice the urine she should be, that her bladder wall is thickened (a sign that there have been far more infections than we have been aware of), and that she is rectally constipated. Her residuals on testing looked good thankfully and there was no reflux back up into the kidneys seen....both issues that could happen anytime, but have not yet even though there have been issues for quite some time now. Her treatment right now is a drug called Cardura that relaxes the bladder neck and is being used in hopes that it might make it easier for her to release when she tries........a pretty high dose of Miralax to attempt to control the rectal constipation (found out when we were at Mayo that the constipation issues can cause all kinds of urological issues).......and an every two hour schedule during the day where she's expected to try and urinate. They'd like to see her having two bowel movements a day!! Some of Madison's issue seems to be a lack of sensation and knowing when she needs to go, so the every two hour schedule is an attempt to "train" her bladder. She is also on a prophelactic antibiotic in hopes of stopping the frequent infections. I'll be honest and say that I am not seeing any real changes in her urination, though her constipation seems like it might be better. She's not going as frequently as they are wanting, but she is going atleast once daily right now. I suspect they will repeat the VCUG and Urodynamics when we return to Mayo in March and then make some decisions about whether we continue with this treatment plan or not. I really really really really don't want to have to cath her, so am praying very hard right now that there is some improvement and I am just not seeing it right now. I am glad though to be starting out with a less invasive way of trying to get some control before resorting to the cathing option. Very much feel like we're being proactive and attempting to address the issues without going to the extreme, if that makes sense. Oh yes, you were asking about the Urodynamics testing.......sigh, its definatly not a fun one, though could be worse I guess. In our case they had the kids get undressed in a small bathroom next to the room where the test would be done, and urinate into a potty that had some kind of guage in it. They then had the kids get into a special chair in the room where they placed a catheter into their bladder as well as one with a small balloon into the rectum. The bladder is then filled with saline while they monitor a number of different things until the child feels the need to urinate. While they are doing this they occasionally ask the child to cough to see if there is any leakage and whether there is any spasming of the bladder. Once the child feels the need to urinate, they urinate around the catheter. They sometimes refill the bladder again and repeat the process. Hope this helps!! -- BIG hugs, Kass, proud mom to Chance(10-Mito), Madison(7-Mito), and Abby(5-Mito) Home Page (http://home.swbell.net/mcpoop/index1.htm) Updates (http://www.caringbridge.org/tx/mitowhat/) United Mitochondrial Disease Foundation (http://www.umdf.org) "Life is not about the breaths we take, but the moments that take our breath away" Unknown kerry.tobin@... wrote: Hello: I remember a few months ago we had some discussions on Urine Retention (Kass your daughter had just gone to the MD). Anyway, Hailey is 4 yrs & Brenna 2 yrs last month they were both in the hospital with the Flu. Hailey went 26 hr before any urine output and had 300 cc's. Brenna was cathed at 25 hrs and had 410 cc +. They both used to do this only during illness or heat. Now within the past 2 months Brenna is doing it more and more. Yesterday she went 22 hrs before going. We have done the bladder scans at the urologist. Our last appt in October we were told we need to straight cath Brenna 2x's per day, then while the MD was writing up the orders Brenna had a wet diaper and the MD told us "see you in 1 yr". Very drastic change in just a few minutes. As of Friday the nurse in urology said we are to straight cath both of them if they go longer than 12 hr with out urine output. She also scheduled them for a urodynamics testing. Can anyone tell me more about this test?? At this point I don't think the urologist is being very proactive or helpful. It seems to be our wonderful metabolic MD that is helping us out and concerned over their bladder issues. Both girls have had ultra sounds and all looks normal on the scans. Any input or opinions on this issue would be great. Thanks for listening! Kerry Plymouth, MA Hailey 4 yrs Mito & FOD Brenna 2 yrs Mito & FOD Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2004 Report Share Posted January 20, 2004 My daughter Lexi has fought the urine retention battle for several years (she's nearly 6 now). She can go up to 48 hrs without any urine output, often strains to get urine out, and won't even go in to try unless reminded. We have had VCUG test done on her bladder last year, where they fill her bladder up using a catheter, then ask her to void, then shoot an ultrasound to see how much is left in the bladder and if any refluxed into the kidneys. They filled her bladder with the cath, she couldn't et ANY out even though she was crying with the pain. Finally i put her on the toilet and she voided until she said she was empty. We shot the ultrasound. She was still completely full. That told us she probably doesn't ever have the sensation of having to go until it's an emergency situation. Her bladder has been stretched out over and over and that eventually it just loses sensitivity to the sensation. We had the best luck with using our mito doc and our general GP to steer us in the right direction. I'm sure there are good urologists out there, but not around here! Hope you can find the answers you need! ruth mom to Mitch and Lexi, both mito affected Quote Link to comment Share on other sites More sharing options...
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