Mother/Daughter with IC - Help!

[shoppingkim]

I personally was diagnosed with IC about 5 years ago, and after several treatments & procedures (hydrodistension worked best), I have been in "remission" for 2+ years, and hope to stay that way, as after my divorce I have a lifetime rider on my insurance (one of my criteria for dating now is group health ins - LOL).

Anyway, my 7 year old daughter has now been diagnosed with IC. Poor thing. Since we live in the middle of nowhere, I've been driving her to Omaha, and that pediatric urology performed a hydrodistension on her that made her symptoms worse! She has the burning, leaking, frequency and lower back pain. He doesn't know what else to do now!

So, I've been researching the internet and have found 2 doctors that specialize in children with IC - one in Joliet, IL and one in Boston. So I'm thinking about flying with her somewhere for treatment. It's hard as I'm a single mom with 4 kids, so hoping I can arrange everything ahead of time and do consultation and treatment in the same time frame.

Anyone have any experience or recommendations for us? TIA.

[ICNDonna]

Actually Nebraska has some excellent medical facilities, especially Omaha. One thing you might do is to suggest that her current uro confer with one of the specialists about treatment options. That would be considerably less expensive for you.

I hope you are able to find effective treatment soon.

Warm hugs,
Donna

[vm]

If you haven't already run a search of the ICN, you might use this link to do so:

http://www.ic-network.com/search.html

It is a Google search just of our site.

[Katrina]

:welcome: to the ICN. I am so very sorry you and your daughter have IC.
https://www.ichelp.com/AskTheDoctor/physicianregistry.html This form will have the ICA recommend doctors for you. One other option is contacting a support group:Nebraska Lincoln For information on the meetings, contact Deb at 402.438.1903. Deb Vocasek
402.438.1903

You came to the right place. We are here to help!! :grouphug:

http://www.ic-network.com/forum/showthread.php?t=7562 this is thread of pain relief the second page has attachments I believe the last attachment is the list of pain relief ideas.

http://www.ic-network.com/forum/showthread.php?t=11535 This is newbie kit from the oldies to the newbies
http://www.ic-network.com/icchef/ online cookbook IC
http://www.icnshop.com/ there are IC friendly things such as alternatives, soaps, foods, books, and many other things. It is a good place to take a look at.

http://www.ic-network.com/handbook/ this is an essential link for everyone with IC. It is very informative on meds, living with IC, and self help....take a look!!!

[traceann]

I agree with Donna on seeing if her current uro can confer with one of the specialists, that would be a great way to go. I know my gyno (who initially treated my IC and still does - sort of, lol) did that with the uro in our area to help treat me better, saved me the trouble of seeing him.

Please keep us posted on how everything goes. I feel so bad for someone so little to have to deal with IC! UGH! That's got to be horrible for her, lucky she's got you who knows what it's like and can understand what she's going through :)

Hugs,
Tracey