View Full Version : Such a big flare for a little lady
06-22-2001, 06:02 PM
Well Gracie has been to a pediatric urologist on and off for over a year a half. They never diagnosed her, and refused to even consider that IC was a possiblity because she is only 6 (seven in September, she won't let me for get it). So we have had her on IC treatments since then, but it's not IC. Yeah right. When we moved from Washington back to Michigan I stopped her meds, she was in a full blown remission and family members only argued when they saw her three perscription routine. Well the remssion is over big time. She is back with urgency and frequency, burning, pain and basically a rotten flare kind of feeling. My poor baby was up until 4:30 am last night dealing with a flare. After ditropan, and a warm sitz bath plus lots of hugs I finally got her to sleep.
I hate this disease and I hate the fact that it is soooooooo obvious that something is wrong and docs won't diagnos her because of her age........so what we can only get sick when we turn 18???
Thankfully I had learned a few tricks from this site about how others deal with flares, and since Grace seems to flare differenlty than I do, I am falling back on that knowledge every day. Thanks guys.
I wonder how long before the new research on diganosing kids with IC will be useable to gain treatment for our daughters. Hummmmmmm Lisa
06-23-2001, 07:51 AM
I'M SOOO SORRY.I KNOW HOW YOU FEEL,I DON'T KNOW HOW TO GET THE DOC'S TO BELIEVE MY CHILD HAS IT TOO.I HAVE BEEN GOING THROUGH THIS FOR 2YEARS AND IT HASN'T GOTTEN ANY BETTER.THEY WANT EVEN GIVE MY DAUGHTER THE DITROPAN.SO WE DEAL WITH IT WITHOUT ANY MED EXCEPT I GIVE HER BENADYL AND IT SEEMS TO HELP ALITTLE?
SO I PRAY EVERYDAY THAT THE DOC'S WILL CHANGE THEIR MINDS ABOUT THIS.
GOD BE WITH YOU,
Lisa~that just makes me so :mad: I KNOW that I have had IC since I was a child. My mother refused to dr me (plus 45 years ago it wouldn't have mattered) and unfortunately I grew up believing that everyone peed ALL the time and that being in pain was just a normal part of life. PLUS, having a mother who kept telling me it was all in my head didn't help much.
Your daughter is so lucky to have you for a mom. I know how horrible you must feel but at least you can keep fighting for her, and the most important thing is, you can and WILL validate her pain and that is soooooooooooo important, we all kow that.
Hopefully, once things straighten out in your life you will beable to find 'THE' uro who will do right by the poor baby.
sending tons of prayers
plus tons and tons of hugs~
09-21-2004, 01:22 AM
Where in Michigan do you live, I also live in Michigan in the Upper Peninsula, I know a good doctor in Petoskey, and also in Escanaba. I have used both, I go to Escanaba just because its closer.
Hugs for your little girl. :grouphug: I hope you can find a Dr. who will work with you a little better. I would see what I could find.
09-21-2004, 04:51 PM
:cat: :angel: may good bless your little angel and heal her of ic its a terrible thing to have as an adult but for a child i am so sorry for her. my granddaughter is 12 yrs old and she had a lump in her tiny breast, we took her to the doctor to find out she had a breast infection due to inverted nipples it broke my heart to see her hurt i will pray for both our little girls
09-22-2004, 02:19 AM
I am sorry you and your little girl have to go through this.
Huggs and my prayers for both of you!
09-22-2004, 03:21 AM
I see this is a very old post but hopefully you are still out there. I too started having I.C. in 1966 when I was 6. The navy dr's said my bladder was small and I would grow out of it..my mom took me to many dr's and they all said nothing was wrong. I knew I wasn't crazy, altho I think my mom was starting to doubt me..Finally another dr in 1976 I found out I had I.C., but the D.M.S.O. treatment I got ran down my leg when I got up off the table and mom never took me back to that dr..he couldn't even get the medicine where it needed to be...I finally found a dr in June who started me on Elmiron 4 pills a day with 2 times a week direct bladder instills..amazing difference. I have actually gone several hours in between pee trips and I almost cried I was so happy. I had a bad flare Monday where I went pee 53 times that day. I showed up at the dr's office 9 am yesterday and said "HELP"..they gave me a treament and I will have another Friday..
10-07-2004, 03:20 PM
My daughter is 12 and has been in pain for one year now. We have been to various types of doctors and noone has been able to help. The last dr. we saw on Wednesday actually had the nerve to say to my daughter that it was being caused by anxiety. Because of her age noone will even consider she has IC. I found this website and the stories are so hers. At this point we are trying chiropractic. So far it helps her pain but it is a slow process. My daughter can actually have hours without pain. I find it so awful that children have to suffer. My daughter is tired of going to doctors and getting no help. I just hope that the chiropractor can continue to help her.
10-07-2004, 04:45 PM
I hope the chiropractor can continue to help your daughter, I feel so bad for her. I remember being a teenager and being in pain all the time. It was terrible, lucky I had a urologist that did help me, I wasn't diagnosed with IC, but he stretched my bladder and tried things until I went into remission. I hope you can find a doctor to work with you and your daughter. There is hope, my prayers are with you both.
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