Could it be IC?

[Echomom]

My daughter is eight years old. When I was pregnant with her they found that she had renal reflux and so she started on antibiotics the day she was born. Long story short, she has been on and off of antibiotics her whole life and she had two surgeries to correct the reflux, which we are told is fixed. Since then she has had chronic UTI's. She can still be in pain for some time even after a round of meds and so this last time the ped put her on something to relax her bladder and it really seemed to help. She does not deal with this continuously, there are breaks between the episodes but they are pretty often. When she is going through it she has pain in her abdomen, she will tell me that her bladder hurts. The urgency to go is incredible and she has to go ALL the time. She gets so tired because she will be up several times in the night to go or she will wake to having peed the bed. I have had to have notes from her ped every school year saying that when she needs to go, she has to go. Does this sound like IC, is this something I should bring up in her next appointment? I really want answers to why this just keeps happening and so far they can only tell me that it is not the reflux anymore. I am so frustrated and tired of watching my baby go through this. Any words of wisdom would be greatly appreciated.
Thanks, Echomom

[dyno]

Welcome to the IC Network. I am sorry you are dealing with this with your little girl. She is obviously going through a lot. I don't know if this is IC but you are wise to be checking it out.

One thing you might try to see if it helps anything this the IC Diet. You can find it in the Handbook, see my signature line. Eliminating acidic foods and drinks, spicy foods and additives help a lot of us a lot.

I was in my teens when I was diagnosed and there are others that have been diagnosed at a young age.

It might also be beneficial to get a second opinion. You don't mention where you live but if you would let us know we can maybe make some Dr. recommendations.

She is a lucky girl to have a mom that cares. We are here to help you with what we can.:hi:

[Echomom]

Thank you Jolene. I will read the handbook and see if any of it helps her. I have a question, is IC an autoimmune thing?

[leelee88]

Thank you Jolene. I will read the handbook and see if any of it helps her. I have a question, is IC an autoimmune thing?

It is still unknown what the cause of IC is..Research is being done but IC is still a disease that is not that well known.

[dyno]

As Ronda said the cause is unknown. There is also some thoughts that there could be various causes.

[ICNDonna]

I'm so sorry your little girl is going through this. You've been given some good suggestions. I think diet can be very important. I don't have any idea whether or not she has IC. I do know it's possible for small children.

Donna

[statesboro]

I don't really wanna be doing any repeating now. We may repeat some things, but I do realize you have gotten some good responses by now. We don't know if your daughter actually has IC, but something is going on that is not good. By the way, I do hope and pray that it is correct that the reflux is all gone. IC can affect men, women, and children. In fact, I do know a dude that was diagnosed at kindergarten age.(and not by first doctor that they went to) Yep! Oh! He is in high school by now. I don't know when she has got another appointment, but I would not be afraid to bring up IC. Maybe you can let us know what happens. Ok, then. Take care and be good.

[jemmom]

Just reading your message, I can literally feel your desperation and understand. I have a 13 year old daughter that has struggled since she was seven years old. We have been shuffled around by numerous doctors searching for any possible answer.

She too would have several episodes a school year with abdominal/back/pelvic pains. She needs to drink lots of water and use the bathroom throughout the school day. Questionable diagnosises of UTI taught me to wait for days for the lab results of the urine culture not just the quick test. These would show no UTI and she did not need the antibiotics usually prescribed by dr(numerous times). She does not have the frequency or urgency as her bladder is twice the size of normal, but lots of blood in her urine and lots of pain, and sometimes some burning.

We were told for 6 years that she just had kidney stones, although, we have only caught one in all those years. She was put on a potassium supplements and a high potassium diet. No one had even questioned her bladder.

In March, we found a break when a pediatric urologist in Chicago who decided to do a cytoscopy on her to see if her bleeding and pain was from a stone blockage. What she found instead was that my daughter's bladder would flood with blood when filled with fluid. She tooks several biopsy samples, and when no other disease or autoimmune indicators came back with that, the doctor feels my daughter may have IC. Which ironically requires a low potassium diet. I now question all those theories of "kidney stones" which were mostly linked because of similar symptoms.

Since then we have been trying to follow a the IC diet (very difficult for a kid) and she is on Singulair. We have seen many improvements.....she had missed most of the school year since November, but is now doing regular activities again. It is such a relief to feel as if someone has finally listened. I am cautiously optimistic that we are on the right track since this has been such a long road.

I am not sure if this helps, but my biggest advice would be to keep fighting and searching and asking questions. Just because one urologist or renal doctor has no solution, if you feel something is wrong, find a different one.