Our daughter has tuberous sclerosis complex and as a result has multiple simple cysts throughout both her kidney's. Recently one of the cysts has been changed to complex with thickened wall septa. Her nephrologist does not believe it needs to come out and only needs to be observed until the septa shows irregularity and looks "bumpy". A second opinion with a different nephrologist and also a urologist showed that the cyst has continued to grow in just 3 months and they believe it to be "growing at an aggressive rate" and both recommended it come out "sooner rather then later" in order to avoid additional damage to the "healthy" tissue and to preserve as much kidney function as possible-they expressed concern that at the rate it is growing and with the thickened walls it could be cancerour although it does not fall into any of the "typical" renal cancers based on her age of 9. The TSC nephrologist believes in "do no harm" and is concerned about the potential for other complex cysts to develop. We fear not removing it but understand the reason for waiting and observing closely. We are wondering if anyone has any history or knowledge and advice of what to do. We are in the process of getting a third opinion as well.
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replied July 29th, 2010
Community Volunteer
Hi researchingmom and welcome to ehealth: I like your decision of waiting for the third opinion, but make it a very qualifed Nephrologist...As a child I had Nephritis...I know the problems and pains of kidney disease...Yet saying this I think if my child had this happen I would be tempted to error on the side of safety...Good luck and I send you my best wishes...Take care...

Caroline
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replied August 13th, 2010
you can try alternative methods such as magneto-therapy (a kind of physiotherapy). it is safe, especially for child, sure, effective and has no side effects.
best wishes!
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replied April 15th, 2011
We are going through the exact same situation with our daughter who is the same age? We have also sought three opinions, CHLA, CHOP and Denver. This has been a nightmare. Our daughter's complex cyst is in the midpole so its watch and wait or remove the entire kidney. I'd love to chat more with you "researching Mom."
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replied May 11th, 2011
complex cyst advice
Oh my, my husband and I had our 12 year old daughter to CHildren's Hospital in Pittsburgh yesterday and the doctors are uncertain if the complex cyst has cancerous cell in it or not. My husband and I want a second opinion because as you well know...there are not many "good and easy" options. Please advise us of any doctor in the country that you found to be helpful.
beppsmom
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replied May 19th, 2012
My daughter is 2 years old, we found out about three weeks ago that she has a complex cyst in her lower left pole. The only reason we found this is because she was having trouble with reoccuring UTI's so they did a sonogram on her and found this. The two are not related- Yesterday we went back to Children's here in Dallas and they did a test on her to see if there was any damage to bladder, scar tissue etc caused from the UTI's and then we had another sonogram done on her kidneys. The cyst itself does have septa which is so scary from what I read. Its my understanding we go back in August to see if the cyst has grown more as for now we are doing the wait game which is driving me nuts. My doctor/pedi did tell me how uncommon it is for a 2 year old to have a complex cyst. My question is how long should I wait as a mother of a child so young to sit and wait until my child gets cancer from this?? Do they take the cyst out if it show septa in it. From what I have read septa is bad. I can't seem to get many answers to things... This is the scarest thing that I have ever had to do ever in my whole 32 years of life even more scary then my own cancer scare.
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replied April 11th, 2014
Our child also has a complex cyst on his kidney and we are looking for any information or advice. The urologist said they do not give a Bosniak classification for complex cysts in children. Has that been your experience as well? Has anyone found any info on how likely these cysts are to change over time? Thanks for any info or advice.
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