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My daughter has Hydronephrosis of the left kidney and Hydronephrotic reflux of the ureter, she is 3 1/2 years old.  Her condition was dianosed during my pregnancy so she has been on medication since birth and under a specialist consultant.  For the past year I've been trying to potty train her, and some days she does really well manages around 5 hours getting to the toilet and staying dry, but most days  she wees herself so much, for example the other day she wet herself 6 times in around fifteen minutes,  and I'm not talking little wees either.  I am now at the stage where this is beginning to worry me, people don't understand her condition as on the outside she looks like any other child, people don't see the stomach anf back aches, constant urination and pain when she wees, she is now beginning to see she is different as she started school in april, she now notices the other children going to the toilet and not having accidents like her.  I have explained to her that she is a little different to other kids and we call it her special tummy. Is there anything I can do to help with her potty training so she doesn't feel as different and to make life a little  bit easier for us all?
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667923 tn?1421462724
      I am so stuffed and can't eat anything or I won't be able to breath. There has got to be something that can be done. I am so miserable.Do you think that they could have misdiagnosed it? I don't see how it didn't show up in my blood work. It has taken me 4 yrs. to get thus far. I am at my ropes end. I can't sit up or stand up and all that I can do is lean back in bed on @ a ton of pillows. It can get so frustrating to just be able to lay around moaning. I hate it. I just want to live my life witout pain, but just @ to feel I will never get there to the place that I used to be.
     I posted this first paragraph early this morning(I think it was around 2 or somewhere between there and 4) and have to leave the comp. just to rest. I didn't take the Lyrica like I usually do every 6 hrs. I waited and suffered a little, but overall this has been a good day after not taking it. I wonder if it has something to do with the whole thing. The Lyrica I believe is responsible for all the bloating. Now, I am not saying that I don't have Hydronephrosis,it is just strange how I don't feel as swelled and can breath better. I also have bumped up my patch mcg. I was taking the 50mcg and now I am on the 75mcg. I am sure that is helping my pain level, but it has nothing to do with the bloating. I even ate a hamburger and 2 cheesesticks around 2 hrs. ago and still feel rather good and not gasping for air. So, what do you think?
     I started to get a little headache and I am sure that is from not taking Lyrica and it had been over 10 hrs. since. I just want to take it every 12 hrs. and maybe then can tolerate the side effects better. I have a new photo I am going to upload. I hope it takes. It is one of me in Nashville. I will try. If not on this one maybe the next. I will at least put it in my profile and then add it later. I want to have a better outlook on myself and not see me that in the bed photo of agony every time I post...:)
     You all take care and I hope you too have a good evening...maybe things will get better for you too...you just have to believe and have hope...keep it..it takes a while sometime. I have a lot of patience and it takes it. The world can be an ugly place sometimes...if only we could get along...all of us. That is the way it should be.
     So, take care for now and always...GOD BLESS...Karen
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667923 tn?1421462724
      I really don't know what to think. I knew I was swelling, but had no idea it was my kidneys. I take Lyrica for nerve damage and figured it to be that. I weighed in a yr. ago at around 135 or somewhere abouts. I used to weigh 105 when all this began after sugerey on C5-C6 ruptured petrusion. Had a diskectomy with titanium plates and donor bone(that didn't even know of until way after the surgery). I have suffered for so long and another thing that I wasn't even told @ was having a Chiari Malformation. I thought they had to tell you everything? I don't understand that I went back 9 out of 11 of the yr. of surgery with pain and all they would do is give me a presc. and I just wanted to find out what was causing the pain. I have done nothing, but go downhill ever since and it is so hard when you are so active and have two young boys. I look like I am pregnant...9 mos. ready to deliver. It is real and I can't breath good. I live in a small town where the doc seems to dodge you...He said he had an emergency today when I was going in and that is what the nurse said. I was in his room for I know at least 30min. then decided to go weigh myself to keep up with it and saw him leaving out of a room. He seemed to sneak into his cubby hole and was sipping on some water when I walked or should I say limp into his little area. He was in no hurry...I don't understand..emergency? I wanted to say something so bad, but knew I live in such a deprived area that there are not but two docs I think in the whole town. He at least was giving me my meds that I needed to make it thru..It doesn't take it all away, but it is better than all of it and I knew something was wrong, but had no clue until had the bone scan that I had Hydronephrosis and Degenerative hip/joint disease(never heard of it either...and a fractured rib(an old one is what the nurse said.....how in the world?)Anyway, any input on this would be greatly appreciated. I will check back tomorrow.. so I hope someone will give me something. I am scared and want to know what I am looking at and have some idea of what all it could be. I heard it could even be a tumour of the colon. My dad had colon cancer back in '84 and I had a colonoscopy done @ 5 yrs ago and everything looked fine then,but this is now. So, I will check in and see what you got...Take care all and always...GOD BLESS..Karen
Helpful - 0
1018786 tn?1251362163
Hi; i'm sorry about your child!
hydronephrosis is a complex disorder, may be multi-factorial or originated as congenital(as in your case)
the pelvis is dilated and calices of one or both kidneys resulting from obstruction to the flow of urine. Note that the obstruction may arise from mechanical obstruction of urinary tract(dysfunction in tract its self or as chemical, physiological or physical stressor outside the tract), or as dysfunction in neuro-muscular system.
generally your daughter voice like have idiopathic congenital anomoly, so all her troubles are expected for chronic pattern!
manege must inhibit or delay complication, such as hematuria, infection, renal hypertension or even end-stage renal imapirement(no worry, that may happen after really long time in your daughter case). some surgical procedure are available to relieve the incident retention (urethral catheter, retrograde ureteral catheters or nephrostomy tubes may do help) type of surgery depend on the offending part, if there is no specific cause (we can call it syndrome)
as general that case need very careful evaluation for any invasive procedure, as long her kidney has good extraction capacity, she have no serious infection, no such procedure is needed,  medication is controversial and will not benefit.
for now, your daughter need psychological support, especially by the family. i don't know if any support-centers is available for such situation.
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