Just Wondering!!!

• By Kyleesmom
• Posted October 9, 2008 at 10:37 pm

Hey Christine,

Kylee sees Dr. Kaplan and Dr. Pudhan (not sure of the spelling). Who does your son see? I actually live right over the bridge in South Jersey- Im surprised your son got the biopsy so fast- Kylee is still doing the steriods and they dont seem to be doing the job so they are talking about the biopsy or new meds within the month- but we will see what happens! Well good luck with everything, glad to find someone from the same area! Hope to meet you at the walk on Sunday!

Natalie

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• By brian_josephs_mommy
• Posted October 9, 2008 at 10:54 pm

I don't know...Did your daughter get a stomach virus or have a stomache virus or rotavirus befor she was diagnosed with MCD??.
I was just reading a discussion about it and they were thinking the same thing I was thinking.....Anyway...LOL...I am originally from Philadelphia...I moved to Dover, DE....We are waiting for our home in Philadelphia to be renovated bigining of December it should be done...(Keeping my fingers crossed)....We had to move back due to the gas prices because my son's father still works in Philly and it takes about an hour and a half to two hours depending or traffic..To and From work...Also with our son's recent diagnosis....He needs to be closer to his doctors....It's a pain and a butt driving 2 hours up and 2 hours back and appointment...Not for me but for my son...He is 2 years old and to be in a car for that long and go from the car to the doctors back in the car he gets no time to release any of his energy and his schedule get's so messed up.....

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• By bobbikins
• Posted October 12, 2008 at 8:17 pm

Hi!
My son was diagnosed just after his 2nd birthday and is 4 now. He didn't respond completely to prednisone so had a biopsy within 1 1/2 months of his diagnosis. He has relapsed several times. He is on enalapril for his BP and Prograf, which is an antirejection medication that is less toxic than cyclosporine. His sodium is restricted to 2000mg/day and luckily he loves water! He also wants to eat chips,pizza and hot dogs like his preschool friends do so it's a struggle.
I live in Dallas, TX and I'm an RN. I worked with a girl who came from CHOP and said it's a fantastic hospital, so I'm sure you'll find a great doctor! The National Kidney Foundation web site has many article, support groups and dietary information that I find helpful. Good luck and feel free to keep in touch.
Bobbi

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• By duker
• Posted October 13, 2008 at 9:28 am

I too, have heard that Dr. Bernard Kaplan is top notch. I have only heard fantastic things about that hospital. You are lucky to be in a good area (where there are good nephs).

we are actually at Johns Hopkins and we have have to do hemodialysis at Dupont in wilmington. Do you know anything about that hospital? Apparently, there is no peds hemo in the Baltimore ares - I cant believe it - with all of our great hospitals in this area, I will have to travel either to Dupont or Washington DC Childrens!

That is assuming that they go ahead with the nephrectomy...

good luck and my thoughts are with you

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• By mylifenow
• Posted October 13, 2008 at 12:39 pm

Hi there, OMG My son was diagnosed at 11 months just after getting over the Rotovirus and i was wondering the same thing, does Rotovirus cause this?

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• By brian_josephs_mommy
• Posted October 13, 2008 at 10:13 pm

My son had the rotateq shot was actually that was an oral shot so that he didn't get the rotovirus disease. However, he did have a stomach virus was vomitting and had dirarhea don't know if that is the correct spelling...lol...for like 3 weeks about 2 months befor his diagnosis...but I am sure it was not rotovirus. it was just an infection...i think that it does have a connection though. because in order for the disease to be triggered you have to have an infection or allergic reaction. so having rotovirus could have triggered the disease and it took a while for you to see it..and every child is different so different parents would have seen it different times. I don't know if the Rotavirus could cause Nephrotic Syndrome because like I said he did not have it but did have a stomach virus a few months befor being diagnosed. Like I said though he had the new Rotoviurs shot..soo I don't know..It does make you think and wonder though...

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• By s-nathan
• Posted October 14, 2008 at 5:23 pm

Nephrotic syndrome seem to be triggered by some stomach virus or allergy or in some cases an insect bite.

Our son has had MCNS for the past 2 years and has been on prednisone without a break. In Sept 2006, he had diarrhea for about 15 days and that led to the nephrotic syndrome.

SN

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• By brian_josephs_mommy
• Posted October 14, 2008 at 8:57 pm

I never said I thought that Rotovirus causes Nephrotic Syndrome. My son never had rotovirus and there is children that have rotovirus and never had or got Nephrotic Syndrome. I think if Rotovirus caused Nephrotic Syndrome..Everyone who had it would have Nephrotic Syndrome and they don't. Also they have known about the disease Rotovirus for a long time now and Nephrotic Syndrome I think by now they would have linked the two disease's together. I know having any kind of virus will trigger the Nephrotic Syndrome. Which also means a cold...the flu...and any kind of infection...I am pretty sure that because an allergic reaction or insect bite could trigger it also it too that it can not be that Rotovirus causes Nephrotic Syndrome...
I know that everyone's child would of had to have some kind of infection in order for our children to show signs of Nephrotic Syndrome. The stomach virus is the most common infection that causes a fever and that is why everyone's children had some type of stomach problem befor knowing that their children had Nephrotic Syndrome.
Although, I do not know any of this for sure I am not sure that I believe that it is the actual cause of Nephrotic Syndrome..I am guessing that your immune system is more of the cause the Rotovirus, but I must say you do have me thinking a little but I would have to do lot's of research on that for me to believe it.....

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• By Dave2
• Posted October 15, 2008 at 3:44 am

Hi everyone. I don't live near you, and I don't have a child with MCD, but I do have it myself. I got it when I was 2-1/2. From what I understand, we are born with the weakness and it is then triggered at some point, at some very grave illness. I have been dealing with it for 36 years now. In the majority of cases, I would think that it is manageable, if you consider taking steroids for years at a time manageable.
Sterility can be an outcome after years of steroid use. I myself have been sterile now for some time. I have a son who is 14 years old, and we have fostered two other kids that we would like to adopt. I understand that it is tough for the parents of ids with MCD, because you love your ids so very much, and you would give anything to see them healthy, so I want to tell you all that you are wonderful people, and I want to say that things are OK. There are worse things in the world. I am OK, and so will your kids be. I am so thankful for this type of venue where parents can talk to one another. This stuff didn't exist when I was a kid....

God bless all of you and your kids!

Dave

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• By cgalitski
• Posted October 15, 2008 at 8:52 am

Dave,
Great words! WOW 36 and still have MCD. I guess when they told me my son who is 13 can spill forever...they meant it! LOL. I'd love to ask you some questions, since I have so many. I have this gut instinct that my son, is going to spill for a long time. And I'd love to hear from you.

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