Guest guest Posted May 7, 2003 Report Share Posted May 7, 2003 Hi Erna, Good to hear that Josh is doing well. I know that is just pure music to your ears. As a mom, nothing is more important than our children's well being. They do grow up very fast don't they. He is already so tall, and probably not finished growing yet! Take care, and enjoy the nicer weather! \ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2003 Report Share Posted May 7, 2003 Hi Erna, It always makes my day to hear that someone's kid is doing well. Good luck on transferring to an internist. I would find that so scarry - kind of like leaving home. I don't know about where you are, but treatment at children's hospitals here is a great thing. If only they treated adults that well at regular hospitals! What units are your protein creatinine ratios in? Here they do them in mg:mg units - which produces a much small number value that you guys seem to get (for example, normal here is <0.1). Congrats on getting it down so low. It must have felt awesome to hit the double digits. All the best, Cy Josh's update > Hi all, > I have not been at my computer alot lately as after many years of > working part time due to Josh's illness, I am now working a lot and > trying to catch up financially and do some much needed home > renovations. > The good news is that Josh is still doing well since November when > he was okayed to leave his low salt diet of 7 years. His current > protein/creatinine ratio from Monday is 35--tons better than the 565 > we had in the past. > The new thing is that the pediatric nephrologist here in Lethbridge > wants to transfer Josh, now 16 years old and 6'1/2 " to an > internist. I thought we could wait until he was 18 before we had to > make a move and get used to a new set of medical people. However, > it's probably better to make the move now while things are going > good and I'm calm, than in the midst of a medical crisis. I do hope > that this won't mean that we will also have to leave the pediatric > nephrologist at the Alberta Children's Hospital in Calgary, who has > been a wonderful person to work with. > What prompted our most recent visit to the ped was that for 2 or 3 > weeks Josh had felt dizzy upon standing up. I thot perhaps his > Monopril may have to be adjusted. The ped thinks its because he's so > tall that his heart hasn't caught up with the fact that it has to > send the blood a lot higher to his head!! Just an adolescent growth > thing. I was hoping that he was doing so well that his Monopril > could be reduced! Ever the hopeful mother! Anyway, she has said > that the new internist will review all of that with us when he does > his initial assessment. I'm wondering if any other people remember > such a phenomenon when a teen? > Speaking of the weather--here in Lethbridge, Alberta, we have the > white stuff, snow for the last 4 days. April was balmy enough to > plant the garden--hey, maybe that was our Canadian summer--too short! > The good news is that it's warm enough so the sidewalks and roads > are just wet and not icy--so shovel snow off the car, but no > scraping windshields!! Yea, I can live with that! (Actually I can > live with most anything when my son's healthy!) > Erna T (Josh iga dx age 8, story in personal files) > > > > To edit your settings for the group, go to our Yahoo Group > home page: > http://groups.yahoo.com/group/iga-nephropathy/ > Visit our companion website at www.igan.ca. The site is entirely supported by donations. If you would like to help, go to: > http://www.igan.ca/id62.htm > > Thank you > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2003 Report Share Posted May 7, 2003 Erna, Thanks for posting Josh's update. It is pleasing to see him doing so well, a tremendous pressure removed from you and most certainly an encouragement for others on the side lines. Derrick Sydney Australia > Hi all, > I have not been at my computer alot lately as after many years of > working part time due to Josh's illness, I am now working a lot and > trying to catch up financially and do some much needed home > renovations. > The good news is that Josh is still doing well since November when > he was okayed to leave his low salt diet of 7 years. His current > protein/creatinine ratio from Monday is 35--tons better than the 565 > we had in the past. > The new thing is that the pediatric nephrologist here in Lethbridge > wants to transfer Josh, now 16 years old and 6'1/2 " to an > internist. I thought we could wait until he was 18 before we had to > make a move and get used to a new set of medical people. However, > it's probably better to make the move now while things are going > good and I'm calm, than in the midst of a medical crisis. I do hope > that this won't mean that we will also have to leave the pediatric > nephrologist at the Alberta Children's Hospital in Calgary, who has > been a wonderful person to work with. > What prompted our most recent visit to the ped was that for 2 or 3 > weeks Josh had felt dizzy upon standing up. I thot perhaps his > Monopril may have to be adjusted. The ped thinks its because he's so > tall that his heart hasn't caught up with the fact that it has to > send the blood a lot higher to his head!! Just an adolescent growth > thing. I was hoping that he was doing so well that his Monopril > could be reduced! Ever the hopeful mother! Anyway, she has said > that the new internist will review all of that with us when he does > his initial assessment. I'm wondering if any other people remember > such a phenomenon when a teen? > Speaking of the weather--here in Lethbridge, Alberta, we have the > white stuff, snow for the last 4 days. April was balmy enough to > plant the garden--hey, maybe that was our Canadian summer--too short! > The good news is that it's warm enough so the sidewalks and roads > are just wet and not icy--so shovel snow off the car, but no > scraping windshields!! Yea, I can live with that! (Actually I can > live with most anything when my son's healthy!) > Erna T (Josh iga dx age 8, story in personal files) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2003 Report Share Posted May 8, 2003 Derrick, How are you doing? Just the other day, I was thinking that we haven't heard from you in a while. Hope that this finds you doing well... Connie Re: Josh's update Erna, Thanks for posting Josh's update. It is pleasing to see him doing so well, a tremendous pressure removed from you and most certainly an encouragement for others on the side lines. Derrick Sydney Australia > Hi all, > I have not been at my computer alot lately as after many years of > working part time due to Josh's illness, I am now working a lot and > trying to catch up financially and do some much needed home > renovations. > The good news is that Josh is still doing well since November when > he was okayed to leave his low salt diet of 7 years. His current > protein/creatinine ratio from Monday is 35--tons better than the 565 > we had in the past. > The new thing is that the pediatric nephrologist here in Lethbridge > wants to transfer Josh, now 16 years old and 6'1/2 " to an > internist. I thought we could wait until he was 18 before we had to > make a move and get used to a new set of medical people. However, > it's probably better to make the move now while things are going > good and I'm calm, than in the midst of a medical crisis. I do hope > that this won't mean that we will also have to leave the pediatric > nephrologist at the Alberta Children's Hospital in Calgary, who has > been a wonderful person to work with. > What prompted our most recent visit to the ped was that for 2 or 3 > weeks Josh had felt dizzy upon standing up. I thot perhaps his > Monopril may have to be adjusted. The ped thinks its because he's so > tall that his heart hasn't caught up with the fact that it has to > send the blood a lot higher to his head!! Just an adolescent growth > thing. I was hoping that he was doing so well that his Monopril > could be reduced! Ever the hopeful mother! Anyway, she has said > that the new internist will review all of that with us when he does > his initial assessment. I'm wondering if any other people remember > such a phenomenon when a teen? > Speaking of the weather--here in Lethbridge, Alberta, we have the > white stuff, snow for the last 4 days. April was balmy enough to > plant the garden--hey, maybe that was our Canadian summer--too short! > The good news is that it's warm enough so the sidewalks and roads > are just wet and not icy--so shovel snow off the car, but no > scraping windshields!! Yea, I can live with that! (Actually I can > live with most anything when my son's healthy!) > Erna T (Josh iga dx age 8, story in personal files) To edit your settings for the group, go to our Yahoo Group home page: http://groups.yahoo.com/group/iga-nephropathy/ Visit our companion website at www.igan.ca. The site is entirely supported by donations. If you would like to help, go to: http://www.igan.ca/id62.htm Thank you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2003 Report Share Posted May 8, 2003 Hi Erma, I'm glad you filled us in on Josh. Over 6 foot tall at 16! Well at least you can't say that the IgAN stunted his growth. I know that you are very proud of him. I also think that you're thinking on changing Neph's now while he's not in crisis is probably very well thought out. I had to change during a crisis and it is not pretty...You just don't have the trust factor with a new Doctor. Let us know how the change goes. Connie Moderator,USA Josh's update Hi all, I have not been at my computer alot lately as after many years of working part time due to Josh's illness, I am now working a lot and trying to catch up financially and do some much needed home renovations. The good news is that Josh is still doing well since November when he was okayed to leave his low salt diet of 7 years. His current protein/creatinine ratio from Monday is 35--tons better than the 565 we had in the past. The new thing is that the pediatric nephrologist here in Lethbridge wants to transfer Josh, now 16 years old and 6'1/2 " to an internist. I thought we could wait until he was 18 before we had to make a move and get used to a new set of medical people. However, it's probably better to make the move now while things are going good and I'm calm, than in the midst of a medical crisis. I do hope that this won't mean that we will also have to leave the pediatric nephrologist at the Alberta Children's Hospital in Calgary, who has been a wonderful person to work with. What prompted our most recent visit to the ped was that for 2 or 3 weeks Josh had felt dizzy upon standing up. I thot perhaps his Monopril may have to be adjusted. The ped thinks its because he's so tall that his heart hasn't caught up with the fact that it has to send the blood a lot higher to his head!! Just an adolescent growth thing. I was hoping that he was doing so well that his Monopril could be reduced! Ever the hopeful mother! Anyway, she has said that the new internist will review all of that with us when he does his initial assessment. I'm wondering if any other people remember such a phenomenon when a teen? Speaking of the weather--here in Lethbridge, Alberta, we have the white stuff, snow for the last 4 days. April was balmy enough to plant the garden--hey, maybe that was our Canadian summer--too short! The good news is that it's warm enough so the sidewalks and roads are just wet and not icy--so shovel snow off the car, but no scraping windshields!! Yea, I can live with that! (Actually I can live with most anything when my son's healthy!) Erna T (Josh iga dx age 8, story in personal files) To edit your settings for the group, go to our Yahoo Group home page: http://groups.yahoo.com/group/iga-nephropathy/ Visit our companion website at www.igan.ca. The site is entirely supported by donations. If you would like to help, go to: http://www.igan.ca/id62.htm Thank you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2003 Report Share Posted May 8, 2003 Erna, Thank you so much for such a sweet email! That was really an encouragement to me. This group is all about supporting and praying for one another through the challenges as well as the joys! I am just glad you are in a place of rejoicing right now with Josh. Thanks again, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2003 Report Share Posted May 8, 2003 Hi , Thanks for rejoicing with us. That's one of the really good things about this group--others who really understand our joys and sorrows! He is already so tall, and probably not > finished growing yet! Josh is estimated by the ped to probably reach the 6' 3 " mark so another 2 1/2 inches to go. Thanks, , for all the work you to on the list to encourage and pray for all of us. Erna T Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2003 Report Share Posted May 8, 2003 Hi Cy, Yes, in general Children's Hospitals seem a much more amenable place to receive treatment. I am hoping for the best with the internist. Our ped says that he is nicer than she is, so we'll see. > What units are your protein creatinine ratios in? Here they do them in mg:mg units The p/c ratio is in mg/mmol and normal is considered to be 0-25 mg/mmol. Thanks for your good wishes and all the best to you and yours. Erna T Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2003 Report Share Posted May 8, 2003 Erna, I don't know if you subscribe to NephKids, but you wouldn't believe all the back and forth as the docs and others tried to figure out what units it's in! Thank you!! Cy Re: Josh's update > Hi Cy, > Yes, in general Children's Hospitals seem a much more amenable place > to receive treatment. I am hoping for the best with the internist. > Our ped says that he is nicer than she is, so we'll see. > > > What units are your protein creatinine ratios in? Here they do > them in mg:mg units > > The p/c ratio is in mg/mmol and normal is considered to be 0-25 > mg/mmol. > Thanks for your good wishes and all the best to you and yours. > Erna T > > > > > > To edit your settings for the group, go to our Yahoo Group > home page: > http://groups.yahoo.com/group/iga-nephropathy/ > Visit our companion website at www.igan.ca. The site is entirely supported by donations. If you would like to help, go to: > http://www.igan.ca/id62.htm > > Thank you > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2003 Report Share Posted May 9, 2003 Connie, I'm going well on dialysis. The fistula is performing well and dialysis is more pleasant than it was in the beginning. I am well into the routine and pretty well adapted to it. There is not much else to say really. I look at the site from time to time but I do not have much to say. I suppose I am well into acceptance mode and I feel better than I have done for 10 years, remarkable really. I suppose I was in a gradual decline long before I was actually diagnosed without realising it. Now that you have promted me, I can't shut up can I? I had an interesting revelation looking at some old medical reports. My creatinine was over the acceptable limit 10 years before I was diagnosed. The tests were done for gout at the time. All academic now isn't it and if I had known then I would have worried for longer. I am quite happy in the circus. Catch you down the track Derrick Sydney Australia > > Hi all, > > I have not been at my computer alot lately as after many years of > > working part time due to Josh's illness, I am now working a lot and > > trying to catch up financially and do some much needed home > > renovations. > > The good news is that Josh is still doing well since November when > > he was okayed to leave his low salt diet of 7 years. His current > > protein/creatinine ratio from Monday is 35--tons better than the > 565 > > we had in the past. > > The new thing is that the pediatric nephrologist here in Lethbridge > > wants to transfer Josh, now 16 years old and 6'1/2 " to an > > internist. I thought we could wait until he was 18 before we had > to > > make a move and get used to a new set of medical people. However, > > it's probably better to make the move now while things are going > > good and I'm calm, than in the midst of a medical crisis. I do > hope > > that this won't mean that we will also have to leave the pediatric > > nephrologist at the Alberta Children's Hospital in Calgary, who has > > been a wonderful person to work with. > > What prompted our most recent visit to the ped was that for 2 or 3 > > weeks Josh had felt dizzy upon standing up. I thot perhaps his > > Monopril may have to be adjusted. The ped thinks its because he's > so > > tall that his heart hasn't caught up with the fact that it has to > > send the blood a lot higher to his head!! Just an adolescent > growth > > thing. I was hoping that he was doing so well that his Monopril > > could be reduced! Ever the hopeful mother! Anyway, she has said > > that the new internist will review all of that with us when he does > > his initial assessment. I'm wondering if any other people remember > > such a phenomenon when a teen? > > Speaking of the weather--here in Lethbridge, Alberta, we have the > > white stuff, snow for the last 4 days. April was balmy enough to > > plant the garden--hey, maybe that was our Canadian summer--too > short! > > The good news is that it's warm enough so the sidewalks and roads > > are just wet and not icy--so shovel snow off the car, but no > > scraping windshields!! Yea, I can live with that! (Actually I can > > live with most anything when my son's healthy!) > > Erna T (Josh iga dx age 8, story in personal files) > > > > To edit your settings for the group, go to our Yahoo Group > home page: > http://groups.yahoo.com/group/iga-nephropathy/ > Visit our companion website at www.igan.ca. The site is entirely supported > by donations. If you would like to help, go to: > http://www.igan.ca/id62.htm > > Thank you > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2003 Report Share Posted May 13, 2003 Hi Erna. So nice to hear from you, especially with Josh doing well. I don't remember having a problem with not enough blood going to my head as a teenager because of being too tall. I guess being about 5 " 2 at the time may have had something to do with it Pierre Josh's update > Hi all, > I have not been at my computer alot lately as after many years of > working part time due to Josh's illness, I am now working a lot and > trying to catch up financially and do some much needed home > renovations. > The good news is that Josh is still doing well since November when > he was okayed to leave his low salt diet of 7 years. His current > protein/creatinine ratio from Monday is 35--tons better than the 565 > we had in the past. > The new thing is that the pediatric nephrologist here in Lethbridge > wants to transfer Josh, now 16 years old and 6'1/2 " to an > internist. I thought we could wait until he was 18 before we had to > make a move and get used to a new set of medical people. However, > it's probably better to make the move now while things are going > good and I'm calm, than in the midst of a medical crisis. I do hope > that this won't mean that we will also have to leave the pediatric > nephrologist at the Alberta Children's Hospital in Calgary, who has > been a wonderful person to work with. > What prompted our most recent visit to the ped was that for 2 or 3 > weeks Josh had felt dizzy upon standing up. I thot perhaps his > Monopril may have to be adjusted. The ped thinks its because he's so > tall that his heart hasn't caught up with the fact that it has to > send the blood a lot higher to his head!! Just an adolescent growth > thing. I was hoping that he was doing so well that his Monopril > could be reduced! Ever the hopeful mother! Anyway, she has said > that the new internist will review all of that with us when he does > his initial assessment. I'm wondering if any other people remember > such a phenomenon when a teen? > Speaking of the weather--here in Lethbridge, Alberta, we have the > white stuff, snow for the last 4 days. April was balmy enough to > plant the garden--hey, maybe that was our Canadian summer--too short! > The good news is that it's warm enough so the sidewalks and roads > are just wet and not icy--so shovel snow off the car, but no > scraping windshields!! Yea, I can live with that! (Actually I can > live with most anything when my son's healthy!) > Erna T (Josh iga dx age 8, story in personal files) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2003 Report Share Posted May 13, 2003 Dear Erna I too am so thrilled to hear from you and that Josh is doing ok, music to my ears. He is a tall young man isn't he, being only 5'7 myself, the only time I got dizzy when I was Josh's age was when I had too much Babysham!!!!Don't touch the alchohol much these days, one small glass of sherry sends me squiffy. Anyway good luck with your work and the renovations, once again lovely to hear from you. Bless you all. Re: Josh's update Hi Erna. So nice to hear from you, especially with Josh doing well. I don't remember having a problem with not enough blood going to my head as a teenager because of being too tall. I guess being about 5 " 2 at the time may have had something to do with it Pierre Josh's update > Hi all, > I have not been at my computer alot lately as after many years of > working part time due to Josh's illness, I am now working a lot and > trying to catch up financially and do some much needed home > renovations. > The good news is that Josh is still doing well since November when > he was okayed to leave his low salt diet of 7 years. His current > protein/creatinine ratio from Monday is 35--tons better than the 565 > we had in the past. > The new thing is that the pediatric nephrologist here in Lethbridge > wants to transfer Josh, now 16 years old and 6'1/2 " to an > internist. I thought we could wait until he was 18 before we had to > make a move and get used to a new set of medical people. However, > it's probably better to make the move now while things are going > good and I'm calm, than in the midst of a medical crisis. I do hope > that this won't mean that we will also have to leave the pediatric > nephrologist at the Alberta Children's Hospital in Calgary, who has > been a wonderful person to work with. > What prompted our most recent visit to the ped was that for 2 or 3 > weeks Josh had felt dizzy upon standing up. I thot perhaps his > Monopril may have to be adjusted. The ped thinks its because he's so > tall that his heart hasn't caught up with the fact that it has to > send the blood a lot higher to his head!! Just an adolescent growth > thing. I was hoping that he was doing so well that his Monopril > could be reduced! Ever the hopeful mother! Anyway, she has said > that the new internist will review all of that with us when he does > his initial assessment. I'm wondering if any other people remember > such a phenomenon when a teen? > Speaking of the weather--here in Lethbridge, Alberta, we have the > white stuff, snow for the last 4 days. April was balmy enough to > plant the garden--hey, maybe that was our Canadian summer--too short! > The good news is that it's warm enough so the sidewalks and roads > are just wet and not icy--so shovel snow off the car, but no > scraping windshields!! Yea, I can live with that! (Actually I can > live with most anything when my son's healthy!) > Erna T (Josh iga dx age 8, story in personal files) > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.