My story

• By Mika
• Posted August 15, 2008 at 10:20 pm
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Hi. I know how you feel, my two boys are everything to me, could not even imagine life without them but came close to losing one. My younger son was diagnosed with FSGS in April of 2007, he was 13 months old. He got very sick and we spent three months in the hospital. After trying many medications and procedures he was given Rituximab and went into remission. He stayed in remission for six months and relapsed in January of this year. He was given another dose of Rituximab and was back in remission in two weeks, then he was also started on Cellcept. He continues to be in remission and is doing very well. His kidneys are working just fine and he is a healthy and normal little boy. The doctors have little experienc with using Rituximab for the treatment of FSGS so there is not much that they can tell us but they are all amazed at how well he is doing.
Best of luck,

Mika

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• By lamom
• Posted August 17, 2008 at 8:28 am
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As I read your story, I could not help but identify with you. My son's FSGS started out with a RASH, as well. Fortunately, we were diagnosed rather quickly, so I did not experience the round of specialists like you did.

My son was put on leukerin (that is the generic name) which is a chemo drug. I recently read all the side effects and feel very sick to my stomach when I think of what could come next. BUT, he did go into remission and has not ever relapsed. I am not familiar with the other drugs that you wrote about, except thr this website.

My son is a normal, functioning pre-teen who lives his life to the fullest. He never misses an opportunity to experience something new. He recently made the travel soccer team and insists on playing football, too! Am I crazy???? I think my rationale is that we (all of us) have to live life each day and get the most out of it. This disease is unfair and can cause one to be very depressed. But, it is not a death sentence . Your son will pick up on your anxiety - I know mine does, so I try to stay positive, and believe that my son is going to be fine. I am blessed to have God's help in that!

I will be thinking about you and your son.
Diane

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• By JosephsMom
• Posted August 18, 2008 at 12:57 pm
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Thanks for sharing. I am glad to hear that your child is doing well. I have never heard of Rituximab before. I will have to research it. We are on the verge of puting my son on Cellcept. Do you have anything negative to say about that mediaction?

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• By JosephsMom
• Posted August 18, 2008 at 12:58 pm
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Thanks for sharing and for your kind words. It really is a blessing that I have found individuals that are going through this as well to share this with.

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• By Mika
• Posted August 18, 2008 at 1:53 pm
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My son does not have any problems with Cellcept. At first he did have some stomach problems but they lowered his dose slightly and that went away. He has been on it since March and so far so good but we will see how things will go long term. However one thing that I have to mention is that he was given Cellcept for a short time before he got the rituximab and at that time it did not help at all. He was on it for a short time because they could not wait to see if it will work eventually because he was so very sick. At that time it made no difference and he was still spilling just as much protein. From what I have read it can take many months before Cellcept starts to work on its own. However since he got the rituximab first and that put him in remission then cellcept seems to be keeping him there. Good luck.

Mika

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