daughter has ic now too

[an0bgobeloba]

it sounds like someone else is saying those words. my 6 year old daughter, brenna, was "clinically diagnosed" with ic yesterday. the uro would like to a couple abdominal x-rays, but expects them to come back normal. however, he won't see her until she has had symptoms for a year. so i am going to ask my uro if she will see her...i'm sure she won't because of her age, but it won't hurt to ask. i started her on cystoprotek and am going to call them today to discuss it. i don't even know where to go from here. why couldn't it be me? why couldn't it be JUST ME!? i keep trying to remind myself of all the things that i say and hear others say that i know are true!! like it does get better, she can have a normal life, i still have a good life and am happy....but i just don't believe them.

[ICNDonna]

I'm so sorry she has IC at such an early age. One good thing is that you are already familiar with the disease and the diet she will need to follow. She will be in good hands with you caring for her.

:grouphug:
Donna

[christinap28]

i am so sorry it is at such an early age. Hopefully they will get it under control and she wont even really realize that she has this horrible disease. Good luck

[Mrs. Peel]

Please take heart.

My IC started giving me real problems at 10 because I was holding my water too long. Once I stopped doing that, I had only honeymoon cystitis here and there until I was 50. Even with a very active, sporty life. Even with lots of chocolate, diet soft drinks, cocktails, and very spicy food.

So keep your hopes up. At least you know not to give her cranberry juice!

[Julie B]

Hi there,

I am sorry to hear about this. Donna is right, though, you will be able to help her unlike people who are totally in the dark.

Nobody likes to hear that their child is sick with something hereditary. But please don't spend any time blaming yourself. My cousin's husband has Type 1 diabetes. Their daughter was diagnosed with Type 1 when she was just three years old. My cousin smelled the ketones on her breath. The endocrinologist said she was the youngest patient he ever had.

A few years later, she took her 9 month old son to the endocrinologist. My cousin thought she was being overly protective, but he was diagnosed also. The endocrinologist again said, he had never seen a 9 month old with diabetes.

To be honest.......the family just operates like having diabetes is normal, because it is for them.

Hang in there Mom........if you ever need anything you know where to come....

Sending hugs to you and your daughter.........

[c2miracle]

Hugs to you and your precious 6 year-old :grouphug::grouphug::kiss:

[leelee88]

I am sorry to here this but she is going to be in good hands with the knowledge you have about IC and I think with the right diet and care she will not have to go through what most ICers have to..

[dyno]

I am sorry also. I was a youngster when I got it too and of all the advice I could give, diet would be the number one thing. Hang in there we are all here for you if you need us.

[SharonA]

I am agreeing with what every one else has already said. Sending you some (((hugs))).

[ellenjb]

I am so incredibly sorry. You and your family are in my prayers.

[Bekah79]

:grouphug:I am so very sorry. It breaks my heart to know a sweet little 6 year old girl has to go through the pain and inconvenience of this disease. My heart goes out to both of you.:pray::pray::pray:

[HeatherP]

For starters, I would try no more bubble baths and a vegan diet.

[nikki0522]

I am so sorry she has to go through this at a young age. I thought me starting this at 15yrs old was young but 6 wow. I couldnt even believe it when I read it. My heart goes out to you and your daughter. Hopefully by the time she is getting her menstural it goes away because I was heathly all the way up till I go my menstrual at 15.

I hope everything turns out good for her and you

Take Care
Nikki

[jvr]

Hi,
I was just wondering how your daughter was doing and how far you've gotten with getting her started on a treatment plan. I totally indentify with you right now because my 5 year old daughter was diagnosed yesterday. I took her to see Dr. Parsons after not getting very far here with local doctors. Dr. Parsons diagnosed her in about all of 5 minutes. He started her on Elmiron at 50 mgs. 2x's daily. He said that children respond really well to Elmiron and that they respond faster too. He told me that in a month that we might start to see a real difference. He wants to see her back in 4 months. He said that within 6 months there is a solid chance her symptoms may be gone and that we can look at tapering off on the medication to see if she can go off it without a repeat of symptoms. He said often it will go away this way, but will often also come back at puberty. He said that you would just start the Elmiron again at that time and gain control again. He really believes in Elmiron and the rescue installations. He was very encouraging in that he thought she could definitely have a normal life with proper care. I could tell that he thought that that would be the rule and not the exception. His nurse was standing with him and nodded in agreement with him much of the time. He is really confident is his ability to help IC patients. I highly recommend him to any IC patient! Is your daughter on aloe by chance? I was thinking about trying some of that too...