Question on Children with IC Moms

[Cath5]

Hi,
I am an ICer for several years, my little girl - 8 years old- has been diagnosed with kidney reflux which means a valve at the junction of the ureter and the bladder doesn't work or possibly exist. She requires surgery for this, and there is an option whereby the surgeon uses a catheder instrument and injects a substance called diflux which causes a hardening in the bladder wall and works 80% of the time to create a valve when the bladder contracts. The pros are that its day surgery and not as invasive as open kidney surgery which is a week in hospital and more risks.

I asked the ped nephrologist what he thought about implanting a substance in her bladder with an IC Mom and he said they didn't know much about the real causes of IC and he couldn't advise me on it. I researched diflux and its a benign substance that is like collagen, and children don't react to it. My concern is that any fooling around with injected substances could later cause IC to start up.

Do you think I am over reacting????? I want to make the right decision here, but I am very worried that the easier surgery may be buying problems down the road.

Cath

[ICNDonna]

My suggestion would be to see one more physician for a second opinion. That definitely does not mean you need to change, and if you tell her doctor that you are having difficulty making this decision and would like to talk with one more physician before deciding, there should not be a problem with sending information to help the second-opinion doctor without having her subjected to additional tests.

I wish I could be of more help.

Warm hugs,
Donna

[Kara Isabel]

I agree with Donna.

It would be worth your while to also consult with a pediatric urologist. Some doctors have simpler solutions to problems.

I hope your daughter feels better soon!! I also spent alot of time in and out of doctor's offices with my son, he was born with a craniofacial defect, and a great knowledgeable doctor makes ALL the difference!

Can you talk to your uro about the risks to your daughter?

Hugs,
Kara

[armslee]

I agree with Kara. Ask your own doctor what his/her thoughts are.

[Cath5]

Thank you for the advice - I am trying to do that. I am having some problems as the doctors are not that familiar with IC (the pediatric doctors) and this diflux that they inject is relatively new so there aren't really any longterm results to help. I am trying to get to the bottom of what is in diflux but I think I am going to have to get advice versus actual medical facts. I am quite concerned as she shows urgency and frequency alot from low level bladder infection caused by the reflux, and with my IC it scares the heck out of me that she could get IC.
Cath