KidComm Nephrotic Syndrome Parents Place : Re: We are new here too!!

[ Post a Response | KidComm Nephrotic Syndrome Parents Place ]

*NOTE* You must register to use this board. All posts will be reviewed before being posted. This is done for your protection and to stop spammers with nothing better to do with their time. Your post will usually show up within a few hours.

Re: We are new here too!!

Posted by Mika on November 29, 2007, 12:09 pm, in reply to "We are new here too!!"
24.57.101.106

Hi. I posted about my son here before. He is now 21 months old and he was diagnosed with Nephrotic syndome in april. Because his condition was so bad they did a biopsy after a couple of weeks and he was diagnosed with FSGS. We spent three months in the hospital and he was VERY sick. They tried cyclesporin but he had a bad reaction to it and could not be on it. Finally they tried rituximob and six weeks later his urine was negative for protein. Rituximob destroys all the B cells in the immune system and it takes about 9 to 12 months for them to return. The doctors do not know how he will do once the B cells are back but are hoping that he will continue to be healthy. Because he has no B cells he needs to get iv ig every six weeks but thats not a big deal. Other then that you would never know that he was ever sick. He looks and acts normal, his kidney function is normal and all his blood tests come back normal. I think that anybody whos child was diagnosed with FSGS should try retuximob since all the other drugs used to treat this are toxic and do not give as good results as this one. However it might not be easy since this medication is very expensive. Luke got four doses at $5000 per dose. We live in Ontario Canada and the government was willing to cover the cost but thats mainly because Luke could not be on cyclesporin (it would kill him) and the only other option was to take his kidneys out. Also because retuximob has only been used a few times to treat FSGS most doctors are very sceptical about using it and long term outcome is not known. However since prognosis for many children with steroid resistant Nephrotic syndrom is not very good then it is worth trying. I will be more then happy to give you any more info about this if you need it.

Good Luck to all,

Dominika

--Previous Message--
: Hi all. My name is Theresa and I have a four
: year old son named Daylen who was diagnosed
: with Nephrotic syndome in May. They are
: sending him for a biopsy because he seems to
: keep relapsing. I am going to try a
: naturopathic DR in December to see if there
: is something they can do to help. I am
: still trying to wrap my head around this
: whole thing, I keep coming up with questions
: and I am glad to read all the e-mails and I
: don't feel so alone. I have two other kids.
: both girls aged 9 and 1 1/2. My husbands
: currently works away from home so some days
: seem crazier than others with little release
: for myself.
: I also have a normally sweet caring and
: loving little boy, who after being on
: Prednisone changes dramatically. It is so
: hard to watch and having to limit fluid
: intake and watch his sodium, I feel like I
: am always saying no to him about something
: and it breaks my heart. But you have to do
: what is best for them even though they don't
: understand. I am not sure what it is that
: they are looking for in this biopsy, we go
: to our Neph Dr in December. I wish you all
: the best for yourselves and your family's
: and look forward to getting to know all of
: you. Take care and be strong!
:
: Theresa
:

Message Thread:

We are new here too!! - Teeswa November 25, 2007, 6:25 pm
- Re: Naturopath - s-nathan December 17, 2007, 4:33 pm
- Re: We are new here too!! - aquamarine December 1, 2007, 3:53 pm
  - Wendy - britfun67 December 9, 2007, 1:46 pm
  - Rituximob- to Wendy - Mika December 1, 2007, 10:22 pm
- Re: We are new here too!! - Mika November 29, 2007, 12:09 pm
- Re: We are new here too!! - RalucaMac November 27, 2007, 12:13 am
- Re: We are new here too!! - RalucaMac November 27, 2007, 12:03 am
« Back to thread

Post a Response

Subject:

Message:

--Previous Message-- : Hi. I posted about my son here before. He is : now 21 months old and he was diagnosed with : Nephrotic syndome in april. Because his : condition was so bad they did a biopsy after : a couple of weeks and he was diagnosed with : FSGS. We spent three months in the hospital : and he was VERY sick. They tried : cyclesporin but he had a bad reaction to it : and could not be on it. Finally they tried : rituximob and six weeks later his urine was : negative for protein. Rituximob destroys : all the B cells in the immune system and it : takes about 9 to 12 months for them to : return. The doctors do not know how he will : do once the B cells are back but are hoping : that he will continue to be healthy. : Because he has no B cells he needs to get iv : ig every six weeks but thats not a big deal. : Other then that you would never know that : he was ever sick. He looks and acts normal, : his kidney function is normal and all his : blood tests come back normal. I think that : anybody whos child was diagnosed with FSGS : should try retuximob since all the other : drugs used to treat this are toxic and do : not give as good results as this one. : However it might not be easy since this : medication is very expensive. Luke got four : doses at $5000 per dose. We live in Ontario : Canada and the government was willing to : cover the cost but thats mainly because Luke : could not be on cyclesporin (it would kill : him) and the only other option was to take : his kidneys out. Also because retuximob has : only been used a few times to treat FSGS : most doctors are very sceptical about using : it and long term outcome is not known. : However since prognosis for many children : with steroid resistant Nephrotic syndrom is : not very good then it is worth trying. I : will be more then happy to give you any more : info about this if you need it. : : Good Luck to all, : : Dominika : : --Previous Message-- : Hi all. My name is Theresa and I have a : four : year old son named Daylen who was diagnosed : with Nephrotic syndome in May. They are : sending him for a biopsy because he seems to : keep relapsing. I am going to try a : naturopathic DR in December to see if there : is something they can do to help. I am : still trying to wrap my head around this : whole thing, I keep coming up with questions : and I am glad to read all the e-mails and I : don't feel so alone. I have two other kids. : both girls aged 9 and 1 1/2. My husbands : currently works away from home so some days : seem crazier than others with little release : for myself. : I also have a normally sweet caring and : loving little boy, who after being on : Prednisone changes dramatically. It is so : hard to watch and having to limit fluid : intake and watch his sodium, I feel like I : am always saying no to him about something : and it breaks my heart. But you have to do : what is best for them even though they don't : understand. I am not sure what it is that : they are looking for in this biopsy, we go : to our Neph Dr in December. I wish you all : the best for yourselves and your family's : and look forward to getting to know all of : you. Take care and be strong! : : Theresa : : :

Optional Link Title:
Optional Link URL:

By posting, you confirm that you have read and agreed to be bound by Boardhost's usage terms.

Please consider supporting our mission

Kidcomm is an online resource for parents of children with nephrotic syndrome and other kidney diseases. Your donations help keep Kidcomm, it's email support groups and this bulletin board up and running. Please consider donating in order to help us help you.

Click here if you would like to donate

Vist our home site Kidcomm - An online resource for Parents.

Join one of our private email support groups for parents and kids!
See our selection of books to help you cope!

See our selection of books to help your child cope!