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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 and some other meds and they all have scary side effects. The fact that cytoxan may not work worries me even more. My instincts tell me to wait. And during that time collect as much information as I possibly can. Thank you all so much for sharing.
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Good morning,
My son Levi was diagnosed with NS/MCD in August 2007. We did the predisone and he would never go into remission. We did a kidney biopsy in December of that year. In January we got the results. He also develped high blood pressure. After many hospital stays, and also 6 albumin infusions Levi started the cytoxan, and did 12 weeks of the medication. I have to say on April 15 2008, he went into remission. We did keep him as isolated as possible during those 12 weeks, because we did not want him to get sick It was a long journey, and too see him suffer so much was horrible. I know the decisions about the medication are rough, but for us it was the right one. Levi has had more side affects from the predisone than the cytoxan. PLEASE, when you wean your daughter off of the Predisone, do it slowly. Levi developed Papilledema (pseudotumor cerebri) whick is fluid on the brain. He has since had to indure 3 spinal taps, to bring the pressure down. While all medications have side affects. I never would have thought he would have suffered this, I thought it would have been more with the Cytoxan. Praise God, he is still in remission. I hope this helps a little. If you have any more questions please ask.
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