Guest guest Posted August 12, 2001 Report Share Posted August 12, 2001 Rocaltrol is a special formulation of vitamin D. I'm on that too. You start needing that when your parathyroid hormone levels are affected by the renal failure. Pierre > > Thank you for your response. I was given a round of steroids for the > uric acid deposits, but it made me sick, so the next time they tried > an anti-inflammatory drug which didn't help either, so I was given > pain killers and told to sleep it off. I am now currently on > Catapress (the patch)-for BP, Clonidine- for BP, Procrit (injections)- > for anemia, Phoslo- Phosphorus blocker, Rocaltrol-cant remember what > its for, Protonix- for ulcer, Terazosin-BP again, Hydrochlorothiazide- > for edema & Zoloft- I guess the Zoloft is because taking all of this > other stuff is making me sad he he. So when I am given a new drug > and it doesn't work I often wonder if it is because it is reacting > with all of these other drugs.... sigh... such an ordeal... Thanks > for the input! > Mia > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2001 Report Share Posted August 12, 2001 Rocaltrol helps your body absorb calcium from your intestine and put it into your bones. Also lowers secondary hyperparathyroidism (PTH). The pain pills for uric acid deposits will only treat the symptoms, they won't treat the cause which is too much uric acid in your bloodstream. Marty Re: New here Rocaltrol is a special formulation of vitamin D. I'm on that too. You start needing that when your parathyroid hormone levels are affected by the renal failure.Pierre> > Thank you for your response. I was given a round of steroids for the > uric acid deposits, but it made me sick, so the next time they tried > an anti-inflammatory drug which didn't help either, so I was given > pain killers and told to sleep it off. I am now currently on > Catapress (the patch)-for BP, Clonidine- for BP, Procrit (injections)-> for anemia, Phoslo- Phosphorus blocker, Rocaltrol-cant remember what > its for, Protonix- for ulcer, Terazosin-BP again, Hydrochlorothiazide-> for edema & Zoloft- I guess the Zoloft is because taking all of this > other stuff is making me sad he he. So when I am given a new drug > and it doesn't work I often wonder if it is because it is reacting > with all of these other drugs.... sigh... such an ordeal... Thanks > for the input!> Mia> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2001 Report Share Posted August 12, 2001 Mia, Keep an eye on your serum calcium levels and calcium*phosphorous product. If you calcium becomes too high, they should stop your Rocaltrol for a while. Too much calcium causes calcification of your cardiovascular system. Phos-Lo is based on calcium also, so it can raise your calcium levels as well. For a couple of years, I was on Rocaltrol and Tums (tums as my phosphorous binder). My calcium would go sky high, the neph would say stop the tums and Rocaltrol for a while. Then my phosphorous would go high and the calcium would go back to normal. Then, they'd have me resume the meds and the rollar coaster ride would would start again. Finally, my nutritionist got me put on Renagel which is the only non-calcium-based phos binder. Things seem to be more stable now. Marty New here> > > > > > > Hello everyone, my name is Mia I am 26 and was diagnosed with > IGAN in> > > 1996. I am currently preparing to be placed on the transplant list> > > through Loma hospital. I have a fistula in my left wrist but> > > have not yet started dialysis.(my creatin is 8.3) My doctor is> > > giving me the choice of getting a transplant now or going on > dialysis> > > for a while and seeing how my body reacts. I am stuck on this > tough> > > decision. I have been married for almost 8 years and I have 3 > small> > > children ages 6,5,4. (our oldest daughter passed away, she would > be 7)> > > so I have their lives to consider as well. I am hoping to talk to> > > others who may have faced this decision and hear their ideas & > > > opinions. Thank you for your time, sorry this is so long! )> > >> > >> > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2009 Report Share Posted June 9, 2009 Hi there. I am new here to this group. I think my 13-month-old daughter might have MDS. I know this sounds crazy, but it was the Mystery Diagnosis that got me thinking about it. I had never heard of MDS before the show. The part that got me was Hannah's mom saying she thought Hannah looked downs in a picture she had taken. I too have thought that on a few occasions, and also at my daughter's birth. I have never raised the issue with a doctor. My daughter has met her physical milestones early, crawling at 6 months and walking at 10 months. She does stick her tongue out a lot and her eyes look different to me (beautiful, but different). She recently had tubes put in her ears because she had ear infections all the time (she is in daycare). So her babbling was a little delayed. She says about 3 words now which seems a little behind to me. Am I crazy? Should I be concerned about this? She really hasn't had any of the other physical traits that could be present. I'm going on intuition. is my second child, so I have been relaxed with her, but suddenly I'm terrified she has MDS. I am the kind of person who needs to know. I can handle anything as long as my daughter is healthy and happy. Can anyone offer advice to me, especially regarding my intuition on this (as opposed to hard facts). Also, if I want to have her tested for MDS, how do I do it without getting a doctor involved? I would pay to have the test done myself. But I'm not sure where to start. Thanks for listening. I feel crazy right now, or at least like other people might think I am crazy. Shan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2009 Report Share Posted June 9, 2009 Hi Shan First of all, no your are not crazy! If you go to our website http://www.imdsa.org and scroll down towards the bottom of the home page and you can see Hannah's story and many of our other stories of late diagnosis. The average age for a mDs diagnosis is 1-4 yrs old. The reason for this is because of the lack of education in the medical community on this rarer form of Down syndrome. There are many who are diagnosed as adults and even many more who never receive a diagnosis. So, it is possible for your daughter to have this with the symptoms that you described. What you should do is talk with your doctor and explain the characteristics that you see in your daughter and ask the a test be done for mosaic Down syndrome.When a person has mosaic Down syndrome they have a percentage of cells that have an extra 21st chromosome and the remaining cells are unaffected. Request that at least 100 cells be tested to get an accurate reading as in a lot of cases the typical 20 cells that are done for full Down syndrome is not enough to find the extra cells. Don't worry about what others think. This is your daughter and your instincts most of the time are right. If others question you, just tell them that you want to just rule it out so you aren't worried about it. Ask as many questions as you want here. We will all be happy to share our experiences! 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 SAVE THE DATE! JULY 10-12 Cincinnati, Ohio USA BUILDING BRIDGES FOR DOWN SYNDROME RESEARCH & AWARENESS CONFERENCE Subject: new here To: MosaicDS Date: Tuesday, June 9, 2009, 2:01 PM Hi there. I am new here to this group. I think my 13-month-old daughter might have MDS. I know this sounds crazy, but it was the Mystery Diagnosis that got me thinking about it. I had never heard of MDS before the show. The part that got me was Hannah's mom saying she thought Hannah looked downs in a picture she had taken. I too have thought that on a few occasions, and also at my daughter's birth. I have never raised the issue with a doctor. My daughter has met her physical milestones early, crawling at 6 months and walking at 10 months. She does stick her tongue out a lot and her eyes look different to me (beautiful, but different). She recently had tubes put in her ears because she had ear infections all the time (she is in daycare). So her babbling was a little delayed. She says about 3 words now which seems a little behind to me. Am I crazy? Should I be concerned about this? She really hasn't had any of the other physical traits that could be present. I'm going on intuition. is my second child, so I have been relaxed with her, but suddenly I'm terrified she has MDS. I am the kind of person who needs to know. I can handle anything as long as my daughter is healthy and happy. Can anyone offer advice to me, especially regarding my intuition on this (as opposed to hard facts). Also, if I want to have her tested for MDS, how do I do it without getting a doctor involved? I would pay to have the test done myself. But I'm not sure where to start. Thanks for listening. I feel crazy right now, or at least like other people might think I am crazy. Shan 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.