Guest guest Posted July 26, 2001 Report Share Posted July 26, 2001 Welcome to the group - and happy birthday! Sorry to hear you've been diagnosed with IgAN. Well at least you live in Beautiful British Columbia, one of the most awesomely beautiful spots on earth (I know, I used to live there). The answer to your question about protein and working out is yes, it can worsen proteinuria (and blood) in urine afterwards a little, but I don't think anyone knows if this is really of any significance. It depends what you mean by working out. If you lift weights, for example, and it makes your blood pressure peak very high while you're doing it, it might make you spill more blood and protein temporarily. But on the other hand, it's good to keep fit. You should ask your nephrologist if the type of exercise you do is appropriate for you. There is never any problem with aerobic cardiovascular type of exercise (which is usually encouraged), but weight lifting and some hard contact sports can be question marks, and I think you will find that there isn't even any agreement among nephrologists about that. Pierre New to group > WEll i like to say that i have been reading this newsgroup for the > last i week and i am pleased with all the info i can accumulate here. > I like to say hi to everyone and also a healthy recovery to all. > I was diagnosed with igA about 2 years ago,while doing a full checkup. > My main doctor had done some xrays before and found that i had an > Ectopic kidney[my left] and from then on didnt bother to do anything. > I then went to my current doctor and he did a full checkup and > cameup with blood in urine [uncommon for males! go figure],we then > did ultrasound,24 hr urine,more test,more test and then the result: > igA. > Anyways i am on micardis[bp pill] and bp has been low ,i am alos > taking the humungous huge fish oil pill:) > I will be seeing my specialist tommorrow again to get my latest > results and will post them here for feed back. > I am a Canadian,Vancouver resident i was born in Malaysia and came > to Canada 25 years ago and love it here!. I am 44 years old and BTW > birthday on the 26th of julysame day i see the nephrologist!. > My doctor also put me on lipitor ,a cholestrol controller,and boy > those suckers pack a punch!. > Just curious ,does protein deposits go up when working out?Mine > almost doubled up and i had just started working out! > Any ways i wanted to say hi and introduce myself here. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2009 Report Share Posted September 1, 2009 Welcome to the group Amy (and by extension, to Brenton). While it may seem like a long road, it really blows by in a hurry. My son Kiernan was diagnosed just after birth, and I was afraid to take that first step, because I wasn't sure what lay just beyond the next hill. 15 months later, I've discovered one truth: it's all blacktop, and we all get there one step at a time. My kid's a little goofy, and he does things at his own pace, but he does them. And he does them in style. Case in point: he learned to pull himself up today. But not in the " typical " fashion. Apparently, to pull up, you need a certain amount of kinetic energy and then you allow inertia to carry you the rest of the way. He sits in the center of the crib, rocks his head, bounces up and down, and then magically he's holding the edge of the crib and standing up. I swear it's the funniest thing I've ever seen. Could I have imagined the smile on his face and mine when we received the diagnosis last June? Nope. Would I trade it for anything in the world? Definitely not. From a medical standpoint, one of the first things I would ask about is cardiac function. It took four doctors to realize that my son had a heart murmur and that they were a contributing factor to his dangerously low oxygen saturation levels when he was in a deep sleep. I just assumed that heart conditions were easily identifiable, but it took a battery of tests to find the two VSD's that were wreaking havoc. Hormone levels are another good thing to have checked. Monkey was diagnosed with micropenis, and his testosterone levels were off the chart (low). After a low dose series of shots, his penis is now well within normal ranges. Our pediatrician said it wasn't absolutely necessary, but that locker rooms were tough enough on boys without having to deal with a little problem like that...... I'm sure Kristy can give you more questions to ask, but I'm only sharing what I've personally experienced. If you ever have questions, feel free to ask. If I don't know the answer, I'll ChaCha it and get back to you. Mike Infernal Vice President IMDSA Subject: new to group To: MosaicDS Date: Monday, August 31, 2009, 4:57 PM Hi everyone, We just learned today that my 1 month old, Brenton, has Mosaic Down Syndrome. I don't really know what to say or do, but I know not talking about it or facing this will not help. We will be going to a geneticist soon for more testing. Any advice or things I should ask the doctor would be great to know. I know this is a long road, and will hopefully improve but for now I am saddened and very emotional. Thank you for inviting me to the group. I look forward to learning more about MDS and what it means for my son and family. Amy mom of Dominic (6), Tyler (4), and Brenton (1 mo. has MDS) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2009 Report Share Posted September 1, 2009 Apparently spellcheck has linked me to the Devil. It should read " INTERNATIONAL " Vice President, not " INFERNAL " Vice President.... From: godblessbrenton <godblessbrenton@ yahoo.com> Subject: new to group To: MosaicDS@yahoogroup s.com Date: Monday, August 31, 2009, 4:57 PM Hi everyone, We just learned today that my 1 month old, Brenton, has Mosaic Down Syndrome. I don't really know what to say or do, but I know not talking about it or facing this will not help. We will be going to a geneticist soon for more testing. Any advice or things I should ask the doctor would be great to know. I know this is a long road, and will hopefully improve but for now I am saddened and very emotional. Thank you for inviting me to the group. I look forward to learning more about MDS and what it means for my son and family. Amy mom of Dominic (6), Tyler (4), and Brenton (1 mo. has MDS) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2009 Report Share Posted September 1, 2009 I saw that Mike I thought it was you being funny. Thats Mike he is just expressing himself again,\. lol From: godblessbrenton <godblessbrenton@ yahoo.com> Subject: new to group To: MosaicDS@yahoogroup s.com Date: Monday, August 31, 2009, 4:57 PM Hi everyone, We just learned today that my 1 month old, Brenton, has Mosaic Down Syndrome. I don't really know what to say or do, but I know not talking about it or facing this will not help. We will be going to a geneticist soon for more testing. Any advice or things I should ask the doctor would be great to know. I know this is a long road, and will hopefully improve but for now I am saddened and very emotional. Thank you for inviting me to the group. I look forward to learning more about MDS and what it means for my son and family. Amy mom of Dominic (6), Tyler (4), and Brenton (1 mo. has MDS) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2009 Report Share Posted September 1, 2009 LOL Envision me shaking my head in disbelief! Just one more reason why we should change IMDSA to ABOCP (a bunch of crazy people) Thanks Mike for clearing that up for us! I was worried! LOL Kristy Colvin IMDSA President ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ International Mosaic Down Syndrome Association PH: Toll Free: 1-888-MDS-LINK http://www.imdsa.org http://www.mosaicmoments.today.com From: godblessbrenton <godblessbrenton@ yahoo.com> Subject: new to group To: MosaicDS@yahoogroup s.com Date: Monday, August 31, 2009, 4:57 PM Hi everyone, We just learned today that my 1 month old, Brenton, has Mosaic Down Syndrome. I don't really know what to say or do, but I know not talking about it or facing this will not help. We will be going to a geneticist soon for more testing. Any advice or things I should ask the doctor would be great to know. I know this is a long road, and will hopefully improve but for now I am saddened and very emotional. Thank you for inviting me to the group. I look forward to learning more about MDS and what it means for my son and family. Amy mom of Dominic (6), Tyler (4), and Brenton (1 mo. has MDS) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2009 Report Share Posted September 1, 2009 I wish I could take credit for that one, but it's a rare instance where I was being RELATIVELY serious. I have to do that just to shake things up once in a while. From: godblessbrenton <godblessbrenton@ yahoo.com> Subject: new to group To: MosaicDS@yahoogroup s.com Date: Monday, August 31, 2009, 4:57 PM Hi everyone, We just learned today that my 1 month old, Brenton, has Mosaic Down Syndrome. I don't really know what to say or do, but I know not talking about it or facing this will not help. We will be going to a geneticist soon for more testing. Any advice or things I should ask the doctor would be great to know. I know this is a long road, and will hopefully improve but for now I am saddened and very emotional. Thank you for inviting me to the group. I look forward to learning more about MDS and what it means for my son and family. Amy mom of Dominic (6), Tyler (4), and Brenton (1 mo. has MDS) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2009 Report Share Posted September 1, 2009 Thank goodness my Zephany didn't have anything to do with it being she was born 6-6-06 !! new to group To: MosaicDS@yahoogroup s.com Date: Monday, August 31, 2009, 4:57 PM Hi everyone, We just learned today that my 1 month old, Brenton, has Mosaic Down Syndrome. I don't really know what to say or do, but I know not talking about it or facing this will not help. We will be going to a geneticist soon for more testing. Any advice or things I should ask the doctor would be great to know. I know this is a long road, and will hopefully improve but for now I am saddened and very emotional. Thank you for inviting me to the group. I look forward to learning more about MDS and what it means for my son and family. Amy mom of Dominic (6), Tyler (4), and Brenton (1 mo. has MDS) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2009 Report Share Posted September 1, 2009 Welcome to the group! Congratulations on your new baby Brenton! (I love the name.......I have an almost 2 yr old named Brennan....very similiar!) My daughter Brielle is 8 mos, she does not have a diagnosis yet, but we are pushing hard to find one. I know how emotionally raw you are feeling right now. It is hard to learn that your " perfect " child may not be as perfect as you had imagined. It will take a while, but time and a good support system will help you sort out your feelings. Everyone here has been very helpful and supportive for me, so I am sure it will be a good support for you as well. Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2009 Report Share Posted September 1, 2009 Thanks Mike for giving me one good belly laugh first thing in the morning of a VERY busy day! ;-) Always good to start off your day laughing ;-) ;-) ;-) Amy along with checking the heart (and have them do an echocardiogram to ensure nothing is wrong); I would also have them check thyroid levels. Remember, always go with your gut - You know your son the best - if you think something is wrong, it probably is - no matter how much the doctors try to dissuade you - keep harassing them. It took us 8 years to find out about the heart issues (3 holes) and 3 years to find out about the GI issue (blockage of her small intestine) - because they did not want to put her through the test! I don't want to scare you because of my two - was the easiest baby, the most loving, the most enjoyable - she still makes me laugh every morning (and some days cry and pull out my hair because she is also the most stubborn) Darlene - mom to (12) and (10) > > > I wish I could take credit for that one, but it's a rare instance where I > was being RELATIVELY serious. I have to do that just to shake things up > once in a while. > > > > > From: godblessbrenton <godblessbrenton@ yahoo.com> > Subject: new to group > To: MosaicDS@yahoogroup s.com > Date: Monday, August 31, 2009, 4:57 PM > > > > Hi everyone, > We just learned today that my 1 month old, Brenton, has Mosaic Down > Syndrome. I don't really know what to say or do, but I know not talking > about it or facing this will not help. We will be going to a geneticist soon > for more testing. Any advice or things I should ask the doctor would be > great to know. I know this is a long road, and will hopefully improve but > for now I am saddened and very emotional. Thank you for inviting me to the > group. I look forward to learning more about MDS and what it means for my > son and family. > > Amy > mom of Dominic (6), Tyler (4), and Brenton (1 mo. has MDS) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2009 Report Share Posted September 2, 2009 Hi Amy, Congratulations on your new son Brenton!! Don't worry if you feel a little upset right now that's OK! We have all been there! You have been truly blessed like all of us here! It might take Brenton a little longer to meet his milestones and that OK too! Every time he meets one it is so exciting! My son is my fourth child and I would not change him for the world!! All the promises of tomorrow await all of our children. mom to 14, almost 12, 9 and 6 and 9 month mDs Subject: new to group To: MosaicDS Date: Monday, August 31, 2009, 5:57 PM Hi everyone, We just learned today that my 1 month old, Brenton, has Mosaic Down Syndrome. I don't really know what to say or do, but I know not talking about it or facing this will not help. We will be going to a geneticist soon for more testing. Any advice or things I should ask the doctor would be great to know. I know this is a long road, and will hopefully improve but for now I am saddened and very emotional. Thank you for inviting me to the group. I look forward to learning more about MDS and what it means for my son and family. Amy mom of Dominic (6), Tyler (4), and Brenton (1 mo. has MDS) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2009 Report Share Posted September 2, 2009 Welcome to our group! You have sooooooo many emotions going through you right know and it Does get better. You will soon see that nothing has really changed your baby is still the same beautiful blessing that he was the day he was born. I have found that I take life as a great gift. Every little smile, giggle, milestone, ect. will be noticed, enjoyed and magnified to you. In a sweet way my heart smiles in a way it never has before when I watch my now 18 month old son, Truett. We had a rough start but have hit the ground running and life is great. Truett is our third boy, we have a soon to be 16 year old and a six year old. Take a deep breath educate yourself from the current publications and most importantly enjoy that little baby. Shaffer, IMDSA Treasurer From: godblessbrenton <godblessbrenton@ yahoo.com> Subject: new to group To: MosaicDS@yahoogroup s.com Date: Monday, August 31, 2009, 5:57 PM Hi everyone, We just learned today that my 1 month old, Brenton, has Mosaic Down Syndrome. I don't really know what to say or do, but I know not talking about it or facing this will not help. We will be going to a geneticist soon for more testing. Any advice or things I should ask the doctor would be great to know. I know this is a long road, and will hopefully improve but for now I am saddened and very emotional. Thank you for inviting me to the group. I look forward to learning more about MDS and what it means for my son and family. Amy mom of Dominic (6), Tyler (4), and Brenton (1 mo. has MDS) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2009 Report Share Posted September 2, 2009 -- Is the geneticist Dr. Proud? - In MosaicDS , " godblessbrenton " wrote: > > Hi everyone, > We just learned today that my 1 month old, Brenton, has Mosaic Down Syndrome. I don't really know what to say or do, but I know not talking about it or facing this will not help. We will be going to a geneticist soon for more testing. Any advice or things I should ask the doctor would be great to know. I know this is a long road, and will hopefully improve but for now I am saddened and very emotional. Thank you for inviting me to the group. I look forward to learning more about MDS and what it means for my son and family. > > Amy > mom of Dominic (6), Tyler (4), and Brenton (1 mo. has MDS) > Quote Link to comment Share on other sites More sharing options...
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