How is it determined that a child has IC

[Melly]

Hi all,

We are trying to get Ellen an appointment with a pediatric urologist. Does anyone know how they determine whether or not a child has IC. It has been years since I was diagnosed. I was wondering if there are any reliable markers in the urine or do doctors still rely on hydrodistention? I am still very worried about my daughter. She has started to experience some nighttime wakings to use the bathroom. I am trying to eliminate things that may contribute from her diet. I have had my IC under control for a few years now, and I hate that this disease has once again become part of my life, and of all the ways through my 6 year old daughter. It just makes me so angry. I just wish it was only me dealing with it, not her. I don't want her to suffer with it.

Melly

[formom]

Hi Melly, I think you should ask the pediatric urologist if there is an easier test for her. Do they find bacteria in her urine? It may be something else, just try not to get ahead of yourself right now and see what the doc says. It could be a little infection. Good luck and will keep your daughter in my prayers.

[GriffsMommy]

I hope it's not IC but if it is at least you got yours under control so hopefully you could help her do the same. There is a potassium sensitivity test where they use a very small cath and put sterile water in the bladder to see how you respond. Then they put the potassium solution in the bladder and the theory is if the person has IC they will have discomfort and an increased urge to go from the potassium. I'm sure your daughter would not be happy about it but it's really simple and doesn't take long. It would be a lot less dramatic than having to be put under for a hydro. I'm guessing this is the test they would want to use on such a young child and that's what I would want for mine. Good luck.

[AngelEyes]

I am too also wondering about this. My daughter is 4 years old and complains of being sore a lot. I have just recently had her urine tested for infection (negative). The doc shrugged it off saying "Oh it's very common for little girls to be sore down there". I felt slightly brushed off. :mad:

What worries me is that as a child I was always at the doc getting treated for cystitis with effervescent fizzy stuff and foul tasting liquids which did not help at all. My then very ancient old doc (going back 27 years now) told my mom the same thing! I remember him saying that it was because we always wore our wet costumes and didn't change straight after a swim. I am worried that my 4 year old has "inherited" a "faulty gene" and is following in my very painful footsteps! Starting with the brush off about how little girls often complain of pain "down there"! :cussing:

Does anyone ask what happens to all those little girls who are sore "down there"? Do they then go on to be us woman who struggle with pain the rest of our lives?

And last but not least where do I go from here? It is NOT NORMAL to have pain without something being wrong!

[karen10]

Oh, my heart goes out to little girls whose doctors tell them that little girls just complain of pain down there!! :( Thank goodness for moms who know better and will take up for their little girls! I would also recommend a pediatric urologist. I know we have a couple where I live. Otherwise, perhaps partner with your pediatrician (if he/she and hopefully you can get a she!) is willing. There must be some research on children with IC! Good luck to all the moms who have little girls who "hurt down there!" :grouphug:

[Melgirl200]

I am so sorry to hear about your young children experiencing these horrible things. You both sound like wonderful and beautiful people who have huge hearts for your children's needs. If only all children were lucky to have mother's like you.

Just to let you know, when I was a child I went through the very same thing (looking back it seemed directly connected to my IC, but at the time no one knew what IC was). My mother was amazing and never gave up on me...and always told me it wasn't in my head and that the pain was real. My suggestion follows what others said- keep on finding a pediatrician that will listen to you and that YOU believe believes your daughters. Unfortunately a pediatric urologist may want to perform a potassium sensitivity test or some sort of test involving a catheter but there are ways for you to help make the experience less traumatic for your daughters. Young children can be diagnosed with IC, but it seems that many medications are not yet approved for children that young. But I'm not a doctor and you have to be her best advocate in finding out what is out there for young children with IC.

Ask millions of questions; don't be told no; and don't give up; always advocate for the less painful subsitutes. I had to be catheterized when I was about 7 years old for a horrible infection and the solution they gave me did help at the time. It was embarressing and tough but my mother held my hand all along the way. All I'm saying is keep on fighting and find the right doctor. Speak openly with your daughters in languages that best suit their age and need. They'll get through this with you.

Good luck- my thoughts are with you. ~Mel