Guest guest Posted January 27, 2001 Report Share Posted January 27, 2001 I just have to chime in on this one. I don't know if the hospital where Adelaine had the VCUG at was U of M or not but it certainly sounds like it. I just want you to know that it doesn't have to be that way. My daughter had an upper GI done at U of M's Mott Children's Hospital and it is the worst thing I have ever done to my child. I cannot believe that these supposedly educated people can behave so inhumanely to a child. My daughter was strapped down as you mentioned - though legs together for an upper GI - the only thing showing was her face. The board she was strapped to - with her arms above her head - was very narrow and then they would flip that board from side to side without any warning to her or to me so I could tell her. Not only did they do all that but they shoved a bottle nipple into her mouth and TAPED it to her face (at which point I screamed at them and told them at once to remove the tape). Then they pushed the barium down this bottle nipple. Two days later she was in the PICU with an aspiration pneumonia. I just want all parents to know that testing in no way has to occur this way!! We didn't know that - we thought that that was the only way to do things. We had an upper GI performed at Rainbow Babies Hospital in Cleveland and we couldn't believe the difference. She was never strapped down, taped down or anything. We simply held her on the x-ray table - gently - and I squirted the barium into her mouth with a syringe when she was ready. When we told the radiologist of our experience at Uof M they could not believe the story we told!! I know an upper GI is vastly different than a VCUG - I just want all parents to know that when it comes to testing you do have a say and things don't have to happen in such a way that traumatizes a child. I still cry every time I think of that incident (as I am now) because I didn't know enough at that time to save my child that trauma. And as someone else mentioned, make sure the testing is absolutely necessary for the treatment of your child!! , mom to Re: A question (not specifically mito related) > , > > Boy have you hit a nerve with me! My daughter Adelaine went > through a period of recurring UTIs. We did do the test for > kidney reflux and there was none. I did a lot of research > before getting the test and what I found was that standard > procedure is to refer little girls for the test after at > least 2 infections and little boys after 1. Also, if you > decide to have the test it is not accurate unless the child > has been infection free and off antibiotics for at least 6 > weeks. > > If you do decide to do the test I would strongly recommend > talking to your doctor about sedation. The test for kidney > reflux is absolutely the most horrid thing we have been > through with Adelaine. They strap the child on a board with > wide velcro straps (legs apart, chest, arms strapped down > above the head and head) and then they insert a catheter. > The board then tilts right and left while they inject fluid > into the catheter. Adelaine has never been so terrified in > her life, she was in an absolute panic through the whole > thing, which lasted about 1/2 hour total I think. She > didn't have any understanding, I suppose if a child could > understand what was happening it would be better. > > I also have a friend whose normal son had 1 UTI and they had > the test done. He was 2 1/2 at the time and their > experience was as horrible as ours. He did have reflux and > was on antibiotics for a year, at which time the test was > supposed to be redone. She talked to the dr. about sedation > and they would not agree. What they did end up doing was > she tested his urine at home for any sign of a UTI (at first > once a week, then every other week, then once a month). The > dr gave her the strips and the cups. They agreed to do this > for a year and he has been infection free. > > I can not stress strongly enough that this test should not > be undertaken without some serious thought and conversation > with your dr. If your dr refuses to discuss this in a > productive way, you may want to go to another ped in a > different practice and get a second opinion. I would go to > just about any lengths to avoid this test if at all > possible! > > Good luck, keep us posted! > > > > -- > Kailing > Mom of Adelaine (4 years - almost five) and Cecilia (11 > months) > Ann Arbor, MI > j-cooper@... > http://www.mich.com/~jaj > > > > Brought to you by www.imdn.org - an on-line support group for those affected by mitochondrial disease. > Quote Link to comment Share on other sites More sharing options...
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