Vater syndrome; Colostomy issues!

Destiny - posted on 06/18/2012 ( 4 moms have responded )

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My youngest child was Born with Vater syndrome. He has had 5 surgeries in total including, Trachea esphogial repair, perforated anus repair, colostomy bag, colostomy reversal and has had his appendix removed. After he had his colostomy reversal he broke out with a horrendous diaper rash, but that was easily fixed with regular cornstarch. This issue now is that my son now 1yr old has over 30 red blister like bumps surrounding his rectum. These bumps bleed and cause him a great deal of pain. He has had these bumps for about 5 months now and every time we go to the doctor at University of Kentucky they keep telling us that they have no idea what they are and to go to a different hospital. Well this last time we went to the doctors we sat in there for 2 hours staright talking to the doctor about what we can do, at some during the discussion the doctor seemed to be over irritated that we kept coming to them with the same question and made the decision that they were and i quote " We have no idea what is going on with your son, so we will just put a colostomy bag back on him and let his butt sit for 6 months." Now i would never deny my child the care that he needs put to me it sounds like the doctors are finding a temporary fix for my son so that we leave them alone. I have spent numerous hours on the phone trying to find another doctor in Kentucky or Ohio and even Indiana. I guess my question is, has any of the moms children had these bumps before? If so what were some things that the doctors did to help it and did it work? Also any suggestions for a good reliable pediatric gastroenterology doctors is very much appreciated! We are trying to get our son better and seem to just be running in circles. Please help me!

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User - posted on 04/17/2014

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Try getting in touch with someone at the Colorectal Center at Cincinnati child. I hear they are very good. I know I am responded long after you asked but I am just seeing this. Hopefully you were able to get your situation rectified but if not contact them. They say they are very good.

Ashley - posted on 12/17/2013

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hello i'm a thirteen year old girl who has vater syndrome if you need help or advise please visit our website or facebook on ashleymarievatersyndrome.org
or ashley marie vatersyndrome foundation because we just open a foundation in August and this foundation helps kids who have vater syndrome so if you need any help just visit us their:)

Destiny - posted on 06/18/2012

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Thank you so much for your reply! I am not exactly sure what it is. The doctors are wanting to put the colostomy bag back on him and then they want to biopsy the bumps. But my thing is, why don't they biopsy the bumps first to make sure its necessary to do the surgery. I mean what happens if its cancer or something else and the surgery was completely unnecessary? I will def check into Akron children's hospital :) a long trip is well worth my sons well being :) thank you again so much!

Jennifer - posted on 06/18/2012

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Could it be some kind of really bad yeast infection. If so, the only thing that will help is something like Nystatin (perscription). I know it would be an incredibly long drive, but I absolutely love Akron Children's hospital in Ohio. I have never had one issue with any of the doctors there. I will have to check on the name of one of the docs. I have a friend who had triplets and one of the children has a feeding tube, so I know she sees a gastroenterologist. I wish you luck!

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