Hydronephrosis - Kidneys? Utis ... Anyone Else?

Updated on October 18, 2012
N.D. asks from Middletown, OH
8 answers

My daughter will be 3 in Feb, and was diagnosed with hydronephrosis before birth. After she was born, her specialist said that he wanted to wait and see if it would correct itself before considering surgery. She has an appointment on the 26th, but I'm just worried about her now and wondering if anyone else has experienced this with their children and what the process/outcome has been like for others.

She hasn't had any trouble with it for about a year (meaning, she hasn't had any urinary tract infections). She had several UTIs for her first year and a half of life, and then they stopped, until now. Well, this time, I wasn't on high alert since it's been so long and I didn't catch the UTI immediately. She wasn't acting sick, and had normal energy. She didn't ever feel warm to the touch, or really exhibit any other noticeable symptoms comparable to the symptoms she used to have in the past along with her UTIs. I finally took her to the doctor when she started reverting from being potty trained. She had a bad UTI, and the pediatrician was concerned that it may have gone up her urinary tract and he was concerned that it may have reached her kidneys. He mentioned the possibility of having her admitted to the hospital for IVs, and said that it would be really serious if it got to that point. First of all, I feel terrible for not noticing this sooner, and not being on high alert. I just kind of "forgot" that my child had this issue, since she had been healthy for so long. She went from having a UTI every few weeks, to nothing at all for about a year. I am beating myself up over this, as I should be, so sorry for the extra details. I just wanted to explain so that you all know I already know I am feeling terrible about this.

Anyway, he put her on an antibiotic for 10 days, which she took as directed and when she finished the antibiotic I just assumed that the infection was taken care of. She told me that she felt much better, and her potty training improved for a couple of days, so I had no reason to suspect that the infection was still an issue. Then, a couple of days later, she started to vomit and I took her back to the doctor. At the office, she had a fever and they tested her urine again, finding that she had a UTI. The doc told me that the antibiotic should have worked because her culture showed that the infection she had is sensitive to the medication he prescribed. The doc gave her a shot in the office, telling me that it was the equivalent of having her admitted to the hospital and putting her on an IV. He told me it would hold her over for 24 hours, and then to come in the following day for another one. He also prescribed a different antibiotic (a sulfa).

When we went to the office the next day, her fever had come down some and they decided not to give her the second shot. I don't know if I was just being paranoid, but I felt like they were thinking that I had not given her the antibiotic as prescribed because they couldn't explain why the antibiotic didn't work. The only possibility he mentioned was that it may have already gone up into her kidneys. As I was leaving though, I asked the nurse if I could mix her new medicine with something since the taste made her gag and fight hard with me not to take it. She said I could mix it with something and to let them know if she wasn't keeping it down, because if not she'd have to take another shot like the last one (which was a terrible painful experience). The reason I mention this part is because my daughter is allergic to penicillin, so her options are limited as far as how many antibiotics she can try, and I know for a fact that she did take her medicine as prescribed and until completion. If they don't have a better explanation as to why the medication didn't work the first time, it worries me that the medication she's on now won't work either. And if that doesn't work, then what's next? Her doc told me that kidney infections could be life threatening left untreated.

Anyway, she is on her 3rd day of the new antibiotic and still has a fever of almost 102 without tylenol. Her docs told me not to give her anything for the fever so that we could monitor the fever better. She has been taking and keeping the antibiotic down. The fever has improved from the 103.8 that it was a couple of days ago, but it's still a fever. They keep telling me that if it doesn't go down Ill have to take her to the hospital, and I'm just afraid and not sure what to expect or prepare for...and I don't know what this means as far as the hydronephrosis.

About the hydronephrosis, I'm just trying to find others who have had to deal with it to tell me about their experiences, especiall if surgery was involved.

Thanks in advance!

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So What Happened?

Wow, thank you all so much. I can't believe I didn't realize how serious this was. I've researched it, but I have never had any idea just how serious this could be. She has a specialist already, who she is seeing on the 26th. Her fever is down today, without the help of Tylenol, but now I'm wondering if I should've just taken her to the hospital anyway. I have been calling the doctor office everyday, and every night with updates on her temp and overall appearance. Today they said that if her temp was down and she seemed fine, she doesn't need to be seen. What if there has already been damage though? Just wait until the 26th to find out when she gets her testing done?

I will go ahead and call her specialist to see what he thinks I should do. Thank you all, and I'm sorry to any of you who have had to deal with this and who are dealing with this. I wish you the best of luck, and you are in my prayers. Thank you for sharing your stories.

More Answers

J.H.

answers from San Antonio on

I have hydronephrosis. I regularly have 24-hour urine collections to test my urine and make sure my kidneys are functioning properly. UTIs are horrible. She needs to tell you if she has any funny feeling when urinating. This way you can catch it quickly.

I've never been given surgery as an option. At least not yet. I just had my first abnormal collection. We're talking high protein, high uric acid and extremely high sodium. My kidneys are failing. I'm having some tests run in the next few days in order to find out how bad they are.

I'm not telling you this to scare you. (I apologize for dumping it all out. I'm still trying to process it.) I'm telling you because I want you to help her and keep her from getting to my point. When I was younger my parents didn't really worry about all my UTIs. When I was admitted to the hospital, the doctors were clueless. I too am allergic to PCN. I've had so many other antibiotics it's not funny.

As far as it being resistant to the antibiotic they gave her, it's quite possible she had two different strands of infection and they got a positive one, and called it a day. (Not because they're bad, but because who expects a kid to have two different strands?) Either that or she got a secondary infection.

Take a deep breath mama, it'll be ok.keep taking care of her and trust the doctors. If at any time you think you can't trust them, then find a new one.

*hugs*

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P.K.

answers from New York on

I would only be seeing urologist/nephrologist, not pediatrician. I would get an appointment with specialist like tomorrow. Do not wait and do not let pediatrician handle. If you cannot get an emergency ynappointment, ask them what you should do since she is still sick. Personally, I would not take no for an answer. I have major kidney issues but II am an adult so do not want to even try to compare.

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L.O.

answers from Detroit on

you didnt do anything wrong. sometimes drs prescribe antibiotics taht are not effective for a particular infection.

my freinds kids ahve taken 2 or 3 different antibiotics to treat an ear infection... cause the 1st or 2nd drug did not work.. when they went back to the dr... the child still had an infection.

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R.F.

answers from Dallas on

Had she had a VCUG to determine if she has Vesicoureteral reflux? My daughter has UTI's off and on starting at around age 2 (she turned 6 in June) - I just thought it was from poor wiping or 'just one of those things'. In March, I took her to the doctor with a high fever (about the same as yout little one) thinking it was another UTI - it was a full blown kidney infection and she was hospitalized immediately for 5 days. That was when my pedi was pretty confident that she should go to a urologist and be checked for reflux. She had it in both kidneys, so surgery was scheduled to repair her ureters. I am very grateful for such a proactive pedi and surgery was the best option - I have no regrets.
If the antibiotic isn't helping after this long, I'm surprised she isn't already hospitalized with an IV antibiotic because the longer she is sick, the more damage is being done.

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B.F.

answers from Dallas on

http://www.mdjunction.com is a website that can help find an online support group that would be helpful. God bless your little girl.

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R.R.

answers from Los Angeles on

If they're thinking she didn't take her antibiotic as prescribed my question to her doctor would be "Why didn't you have us schedule a followup visit to check and see if the UTI was gone?"

As her parent you're the primary member of her care team. It is up to you to bring things to the doctor's attention, as it is with all parents, you HAVE to stay on top of her health. A friend of mine knew there was something seriously wrong with her 3 year old son, it wasn't just the flu as the doctor told her for 2 weeks. She researched online and went in and said she wanted them to do a CBC, complete blood count. They balked but did it and found he had leukemia. This was on a Friday, he started chemo on Sunday. He had a seriously rough time, relapsed twice, but is now a healthy high school freshman. His doctor thanked her for insisting he do his job because even a couple of days in starting treatment could have made a difference. (His words.)

Does your daughter have unilateral or bilateral hydronephrosis, one or both kidneys? If an infection goes to the kidneys it is very serious, kidney failure can result. My Dad died of kidney failure 8 month ago, it's bad. Not trying to scare you but if you are concerned she's still having fever after 3 days of antibiotics (I would be) call her doctor or your local ER and ask if you should take her in.

Research hydronephrosis so you know everything there is to know about it and ask questions of her doctors/nurses. Don't beat yourself up for not knowing she had a UTI, just learn all you can and have her see a nephrologist, a kidney specialist for this, not her pediatrician, especially if surgery is considered. HUGS to you and your daughter.

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D.B.

answers from Boston on

I'm sorry you are going through this, but I want to add that I don't think it's helpful to beat yourself up over this. No infections for a year, and you expect yourself to be on guard constantly even though she had no symptoms? I know you feel terrible but this could have happened to anyone.

As to why the antibiotic didn't work, who knows? Many infections are antibiotic-resistant, and also she vomited so who who knows if she got the whole dose? A shot was a more direct route to get it into her system and bypass her stomach/digestive system. I'm sure it wasn't meant to imply that you didn't give her the antibiotic.

You are already seeing a specialist but don't hesitate to get another opinion if it would help. I'm sure your doctor can refer you to a pediatric nephrologist if he/she isn't one, and even if he/she is, another opinion will be helpful.

Good luck and please know that you are your child's best advocate but you don't have x-ray vision and can't be expected to know everything that's going on internally with her. Forgive yourself, and move on.

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J.G.

answers from Chicago on

My son had surgery at 4 weeks and 13 months. His one kidney doesn't really function and the other is at 70%. He is fine, we've never had any problems. They found his blockages during a second level ultrasound.
A friend of mine's daughter had similar problems. They caught it when she was 9 months and had a terrible UTI that put her in the hospital.

This stuff is super common, common enough that my home birth midwife knew all about it.

Hang in there!

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