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Children with nephrotic syndrome
Discuss your experiences with nephrotic syndrome here.
Please help!
- By QUINNRENEE · New reply 1:23 am
- 24 replies
- I am a mother of a nephrotic child, he is 6 years old.He has been hospital home bond for kindergarten which makes things very hard for the whole family. I just need to talk with another mother who is ...
Prograf and diareah
- By worriedmomV · Posted yesterday at 8:04 am
- 0 replies
- My son has NS, he is 8. He seems to get diareah often. If he gets a virus, like a cough. He gets diareah too. Not fevers, but right to his tummy and the diareah. It lasts for 2-3 days. This happens about ...
Tapering off Prednisone
- By shawny816 · New reply November 6, 2009
- 3 replies
- My son was on Prednisone 5ml=15mg twice a day for a month. Today we had our month check up and his doctor lowered it to 71/2ml roughly 20mg every other day. Does this seem like the norm? He has 0 protein ...
Breast Milk
- By speakerlav · New reply November 6, 2009
- 12 replies
- My daughter who is 3 1/2 years old was recently diagnosed with minimal change nephrotic syndrome. She just experienced her first relapse after being off the prednisone for 7 weeks. So, we are back on ...
Change of Med Regimen
- By Beensoblessed · Posted November 5, 2009
- 0 replies
- My daughter was diagnosed Sept of 08. She's been on prednisone and celcept and has had 2 relapses despite slow removal from the steroids. She hasn't grown much & this is a concern to her dr. He wants ...
Swine Flu Vaccine-Will you/your child get vaccinated?
- By kcsmommy · New reply November 5, 2009
- 21 replies
- Just wondering what your thoughts are on getting the H1N1 (swine flu) vaccine? My 3 year old son is on 2 immunosuppressive drugs, Prograf and Prednisone. His Neph. wants him to get the vaccine as soon ...
Doing the Nephcure walk in tampa Fl. December 12th any one going?
- By QUINNRENEE · New reply November 4, 2009
- 2 replies
- Doing the nephcure walk in tampa Fl. looking for familys that are attending ...
relapsing NS child and getting an H1N1 shot..do you or not?
- By worriedmomV · New reply November 4, 2009
- 12 replies
- Has anyone gotten the H1N1 vaccine for their neph child while the child is relapsing and on Prograf? Not that I can find one anyhow, but my son's Dr said get the injectable as soon as possible whether ...
Adjuvant free H191 Vaccination or not?
- By 4myangel · New reply November 1, 2009
- 1 reply
- Just wondering if anyone has info on pros/cons of the adjuvant free or adjuvant H1N1 vaccine. Our son has relapsed in October & am tapering his pred. Now on 40mg every other day. Have heard the adjuvant ...
so many questions
- By waylonsmom · New reply November 1, 2009
- 10 replies
- Okay waylon went to the neph yesterday... We are starting to tapper the pred down but it is going to take about 5 months to be off totally. My main question is will he relapse? I am praying he is in the ...
High does prednisolone/ high protein levels FLU SHOT ands H1N1 SHOT
- By lovemykayla · New reply November 1, 2009
- 15 replies
- I have scheduled Makayla twice for a flu shot and each time she relapsed right before her appointment. Neph doc said NO to the shot during her relapse. Now she is telling me to go ahead with it..... Kaylas ...
NS and sports?
- By Drew165 · New reply October 30, 2009
- 12 replies
- Do any of you have your angels in sports right now? My son sees his big sister playing soccer and wants to know when he can play. I don't want him to get sick doing so. Any advice ...
Relationship btw allergies and NS
- By LauraG · New reply October 29, 2009
- 16 replies
- I know we have all talked about this at length so what I am about to say might have already been said. I personally believe allergies are related to NS. Both of my daughters have pretty bad allergies ...
What is the longest time between relapses??
- By luckymomof4 · New reply October 29, 2009
- 3 replies
- My son was diagnosed with NS at 2 years old (he is now 12). He relapsed multiple times over the course of about 5-6 years but responded very easily and quickly to steroids each time and did not require ...
Thank you- prednisolone vs. cytoxan
- By lovemykayla · New reply October 29, 2009
- 5 replies
- Thank you all so much who responded to my questions. You all were a great help. I spoke with our Neph doc this morning and she explained that our daughter is considered a frequent relapser. She wants ...
Cytoxan
- By lovemykayla · New reply October 29, 2009
- 1 reply
- Thank you all for your replies. Yes it is a very tough decision and I agree it seems too soon for cytoxan. Pred is a awful drug too and they all are as a matter of fact. I have done some research on cytoxan ...
Swelling and dealing???
- By lalo · New reply October 27, 2009
- 4 replies
- Can anyone tell me how to live with this edema? My daughter is going through a bad relapse at the moment, and has less pee and more puff! I try to stay positive, and we keep her on a very low salt diet ...
Thank you- prednisolone vs. cytoxan
- By lovemykayla · New reply October 27, 2009
- 4 replies
- Thank you all so much who responded to my questions. You all were a great help. I spoke with our Neph doc this morning and she explained that our daughter is considered a frequent relapser. She wants ...
about this swine flu thing
- By lalo · New reply October 27, 2009
- 3 replies
- Hi everyone, just wondering how everyone was feeling about this swine flu emergency. Particularly, has anyone out there had a kid that contracted the virus and was on immunosuppression...and did okay ...
Second relapse
- By Kaif · New reply October 25, 2009
- 6 replies
- My son Kaif had Minimal Change NS since Feb2009. First Med started with 45Mg Pred two month and slowly tapered in next two month. He was absoluately well for one month without pred. One day he caught ...
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