Emma's follow up dr visit

Hey everyone! I wanted to share some great news regarding my daughter Emma's battle with Nephrotic Syndrome. I have posted many journal entries and discussions over the past year and a half since she was diagnosed. Emma finished her 8 week round of cytoxan in December of last year and we went back to the neph in January and he gave her a clean bill of health and told us we didn't have to come back to see him until June unless we had any issues (i.e. a relapse). Thankfully, Emma has continued to be in remission since the end of last year. We went back to see her neph on Tuesday of this week and he again gave her a clean bill of health. Her urine was clear, her body is healthy and we don't have to go back to see him again for a WHOLE YEAR!! I have joked before that I really like Emma's doctor but if I never saw his face again I would not cry about it!!! Emma is physically "back to her old self" again. Skinny as a rail and growing taller by the day. Her hair is growing back slowly but surely. She has really funny looking hair because she has long hair that is still pretty thin but then she has three to four inches of new growth that is thick as can be that is growing in underneath her long hair. I can't wait until the new growth gets a bit longer and we can cut it all the same length.

I feel truely blessed by the Lord that He has healed Emma's body and I continue to thank Him everyday for his support and love during the past year and a half. I don't know if I would have made it through this without prayer!! He does hear our prayers and will provide for our needs!! Amen!

I continue to come to this website and read the postings from other families that are battling this condition. I spent so much time here while Emma was sick that I feel like we are a huge family of parents who are "freaking out" and need each others support!! I will continue to include each and every one of you in my prayers for a speedy remission!!

By maloudevilla
Posted July 15, 2009 at 11:39 am
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im so happy for u...with GOD and PRAYERS on your side there is nothing impossible...I just hope that my daughter will be at that stage too..God Bless...

By tmabriggs
Posted July 25, 2009 at 11:51 am
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Thank you so much for posting your story!! God Bless you, Emma, and your family! Keep in touch! it is so encouraging to hear of your success with this!
God Bless-

By hkelly2009
Posted August 2, 2009 at 10:05 am
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Hi brilliant news can i ask why she was on a course of cytoxan was it just for nephrotic syndrome? i have never heard of children being given cytoxan for ns it sounds like it works.if it was just used to treat the ns it sounds like its worth looking in to.Hannah

By kbarber2007
Posted August 3, 2009 at 12:39 pm
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Thanks to everyone for your responses to my post! I will keep each of your families in my prayers!

Hkelly2009, Emma was put on Cytoxan because she was deemed "steroid dependant". She always responded very quickly to the pred, but could never get fully weaned off. The second course of action (as apposed to her staying on pred FOREVER...which I would not have stood for) was cytoxan. I was scared at the possible side effects....but I figured a lifetime of pred effects on her body wouldn't be any better. I am thankful that we decided to use it. It has worked wonders for my little Emma! She has been in remission for a full 8 months now and is doing great! All glory be to God for his unending blessings on our family!! I would definately look into it for your daughter! Good Luck!!

By Shermil
Posted August 4, 2009 at 11:41 am
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kbarber2007. My daughter is 11 years old and has Nephrotic Syndrome. She was just deemed steroid dependant also just a week ago. They ended up doing a biopsy and was still diagnosed with Nephrotic Syndrome. My daughter will start taking Cytoxan tomorrow. I've been so nervouse about putting this toxic drug into my childs body but after hearing your good news i'm not feeling so bad about it now. Kenzie has to be on it for 12 weeks and has to have blood work drawn every two weeks through out the 12 week treatment. Oh god I hope this puts her into remission too and just makes it all go away. My daughter was diagnosed in December of 2008 and has not looked like her old self since then. I want my real baby back in every aspect. Thank you so much for sharing this with us it honestly has given me hope.

By chasesmom
Posted August 4, 2009 at 1:56 pm
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That is awesome news!!! I dream of the day that my Chase will be in remission!!! He did two rounds of cytoxan before they decided to nix it because he was having so many problems with swelling and edema. So far he's never been in remission, but with lots of prayers and faith hopefully he will get there too!!! I pray that Emma stays in remission for a long time to come and this horrible battle is behind you all!

By kbarber2007
Posted August 4, 2009 at 2:12 pm
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Shermil, I can absolutely relate to what you are going through! We struggled with whether to give cytoxan to Emma or not, but as I said before, it was a better alternative than just letting her stay on pred FOREVER!! I am prayerful for your little Kenzie and for your family. Stay strong in your faith and God will heal Kenzie's body whether it be with cytoxan or something else! Keep me posted on her progress!!

Chasesmom, I am so sorry to hear that cytoxan didn't work for your little man. Has he had a biopsy to find out the kind of NS he has? Is he currently just on pred? I have heard Prograf works for some who have not had much luck with other medications. Has your neph recommended that? I will keep Chase and your family in my prayers that he attains the remission that I'm sure you are all deeply desiring!

Thank you both for your well wishes!!

By Shermil
Posted August 6, 2009 at 7:05 am
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Hey kbarber2007 it's me again. My daughter just started her Cytoxan yesterday. Kenzie is 11 years old and still can't swallow a pill. We cut the pill into four little pieces and she still couldn't swallow the pill. I was wondering if Emma was able to swallow these pills and if she wasn't what did you do to get it in her system. Yesterday we crushed it up and put it in a bowl of ice cream but I was wondering if ou had any other ideas on what we can do.

By kbarber2007
Posted August 6, 2009 at 7:52 am
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Hey Shermil, I worried about Emma not being able to swallow a pill as well but luckily we were able to teach her to swallow it without any problem. We would cut the pill in half, have her fill her mouth with water (or her favorite drink), ask her to tip her head back, we would drop the pill in her mouth and then tell her to swallow everything in her mouth with her head tipped back. That ususally did the trick. There were a couple of mornings that she didn't want to take the pill becuase she was having a bad morning and we would crush it and put it in yogurt but for the most part she did great swallowing the pills. Maybe try the water trick and see if she can swallow them that way. If it doesn't work I have heard that you can get the medication compounded into liquid at the pharmacy. You may want to check with your local pharmacy and see if that is available. I wish you luck with the cytoxan treatment. I pray it works!!

By maloudevilla
Posted August 6, 2009 at 10:34 am
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Hi, so happy for you and ur daughter, My daughter was spilling protein again when the neph lowered her dose to 1 tab 4mg perday...yesterday when we check her urine(we do it everyday)it was +4...I think and feel my daughter was steroid dependant...is it better to use cytoxan than prograf? do you have any ideas what's the difference between the two? do you still need to have a biopsy before taking the second line of med? so confused right now...

By Shermil
Posted August 6, 2009 at 11:38 am
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maloudevilla the doctor would not put my daughter on another drug until he did the biopsy first. Your daughter has not had a biopsy yet? I heard that prograf is a wonderful drug but just a maintenance drug it doesn't take away the problem. My Neph told me this. Thanks for your advice kbarber2007 about swallowing the pills. i'm going to try that and see if it works.

By kbarber2007
Posted August 6, 2009 at 12:02 pm
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maloudevilla, Emma has never had a biopsy so I don't think it is mandatory before trying a second drug treatment. She always responded immediately to the Pred but could never get fully weaned off. I have heard the same as Shermil referenced that Prograf is more a maintenance drug that is taken over a longer period of time. I would take the recommendation of your neph as far as which medicine to try next. Cytoxan worked great for Emma but I have read posts about people that it did not work for at all. This condition seems to effect everyone a little differently so it takes different regiments of drugs to fix the issues. I would talk to your neph and see what he/she recommends. I will keep you and your daughter in my prayers for a complete remission!!!

By Shermil
Posted August 6, 2009 at 12:40 pm
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I talk to another mother on here that the Cytoxan has not helped her. Her daughter has had this for five years now and is not any closer to getting rid of it. I feel so very sorry for her. I told her that if I ever met her in person I'd give her a big hug. Kenzie has only had this for 8 months. I cannot imagine her going through this for five years and hopefully that is not the case for us. It just breaks my heart. I wish there was something that somebody can do for these children. It just doesn't seem fair. I often question god as to why her and not me. I would take this from her and give it to myself today if I could.

Welcome to Inspire!

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