One dr. says she has IC one says no...

[ktyler1320]

On October 30 my daughter woke up with what seemed like a UTI, burning with urination, and frequency and about an hour after this started we could see the blood in her urine. The dr. did a urinalysis and its definitely a UTI, red and white blood cells and pus were found in her urine. He told me to call back the next day to make sure she was on the right medicine. I called and there was no growth so they told me that she did not have an infection and didn't need antibiotics. She has had about 5 of these episodes since then. After the 3rd one her pediatrician sent us to a urologist. We have no pediatric urologists in our town. He did an ultrasound on her bladder and kidneys and said they looked normal. So he scheduled a cystoscopy and said it looks like she has IC. I wanted to deal with a pediatric urologist since she would need ongoing care for this. So I booked an appt. at Texas Children's hospital with a pediatric urologist. He immediately out the gates told us she does not have IC that kids don't get it. He almost was discounting us acting like she isn't really in pain like we said. He said that we should just wait and see. I explained to him that if she isn't on antibiotics she is in so much pain and constantly going to the bathroom and we can see the blood in her urine. He is doing a test for tuberculosis, he said that TB of the bladder causes these symptoms. She had the test administered yesterday and so far there's no bump or redness on her arm. We will go tomorrow afternoon to have her pediatrician read it. I'm really lost as to what to do now or where to go. Could this be IC? If she is on antibiotics she only goes to the bathroom about 6-8 times a day, she still has some burning but it's tolerable. If she is off of them in about two days the blood comes back in her urine that we can see. She always tests positive for white blood cells even if we can't see it.

Thanks so much for any help.
Kim

[VickiB]

Oh Kim, I'm sorry your daughter and you are going through this!

Reading "told us she does not have IC that kids don't get it.", my first reaction is run from this one as fast as you can! I am not a doctor, but I don't believe this statement is true. This kind of stuff has a tendency to make it difficult then to have faith in anything else they might say.

I have noticed a certain amount of relief from IC symptoms while taking antibiotics too. I think it may help with the inflammation, but am not sure about the long term implications of extended use. I don't know if your daughter has IC, but the symptoms you mention certainly would fit. Many of us have gone through a long, frustrating diagnostic process, and it's hard to be patient! It's also hard when you hear one thing from one doctor which is contradicted by the next! But, if it is IC, there are meds and treatments to explore. Hopefully you'll get a clear diagnosis in the near future.

In the meantime, have you read about diet? http://www.ic-network.com/diet/ That one change can make a huge difference in symptoms for many of us. It can't hurt to try and may very well help! There's a link on that page to "IC Diet at a Glance (Cheat Sheet)" which lists various foods as to how well tolerated they tend to be.

Hang in there and keep pushing forward for your daughter!

Vicki

[ktyler1320]

Thank you Vicki, I had that IC in children was rare, and this was a big reason to want to get a 2nd opinion. But for him to not even consider it really threw us. It was like he was thinking she was making up that it hurts her, she is only 7, she's not acting. And she can't "pretend" the blood is in her urine. I'm trying another pediatric hospital now to see if we can hopefully get some answers. I hate the idea of her being on antibiotics for too long. I'm going to check out the diet link and we will give that a try.

Thanks again!

[VickiB]

No, you can't pretend the blood!

I had my share of doctors in the past who thought I was making this up. That was by far the hardest part. Knowing that something is definitely wrong, being in horrible pain, and not having a doctor believe you! The feeling of hopelessness at times would be overwhelming!

I'm glad you're looking for that third opinion. I hope the doctor will be a better fit!

[ICNDonna]

Your family doctor may be able to make a referral for you. You might consider taking her to a urologist recommended by your regular doctor --- especially if he/she is willing to talk with the uro ahead of time about history and findings.

I hope you get some answers soon.

Donna

[an0bgobeloba]

my reaction was the same as vickyb's, RUN!!!! when one of the drs we saw said that i almost fell off my chair!!! he obviously hasn't had ANY medical education for some time!!! now if he had said "ic is rare in children, i'd like to test for some other things" it would have been completely understandable!!! it's fine for you as a parent to get a 2nd, or even 3rd or 4th opinion, but i would avoid him at ALL cost!!! now that i'm done with my little rant, i am soooooo sorry that your daughter has been sick!!!!! there can not be a more heartbreaking thing for a parent to have to see!!!! the good news is that if it is ic, children seem to respond very well to treatment!!!! so there are better days ahead for her!!!!!!! keep us posted with how she is doing!!!!!!