6 year old daughter just diagnosed with IC

[Kathyjo924]

Hope someone can help me,Two weeks ago my six year old was diagnosed with IC, she has the frequent urination( about three times an hour) and pain when urinating.What I need to know is where do we go from here, The Dr.(pediatric uralogist) just told us what she had and told us to put her on a acid free diet THAT"S IT!! My baby is in pain all the time and she is so crabby to everyone it is unbearable. I understand why she is crabby, but what can we do about it? We live in Northwest Indiana, I can't find a uralogist that specializes in IC in children. Can anyone help us? I sure would appreciate any input. Thanks
Kathy
Kathyjo924@yahoo.com

[Dixiefireball]

kathy try checking out www.ic-network.com/handbook or www.ic-network.com they was working on a new childrens book but dont know if its finish yet or not.
you should get in touch with Jill
jill@ic-network.com she should be able to point you in the right direction.
heating pad may help your daughter with some pain or ice which ever she likes better.
the ic diet is very helpful you can also find that at www.ic-network.com/handbook
I really dont know what to say about a child this small but do know its not unheard of.
I hope you get some answers soon.
please let us know how she is.
sending you both hugs and prayers
Rhonda

[ICNDonna]

If diet will help, that's the simplest route to take and it would avoid having to give her a load of medications. Do you have a follow up appointment to see if the diet does give some relief?

I'm so sorry to hear of someone so young being diagnosed with IC. I hope she feels better very soon.

Sending warm healing thoughts,
Donna

[Betsie]

I am at a loss for words, but ironically my oldest had what i now think of as an IC "experience" when she was 5, I nearly went insane. The pediatric urologist at children's hospital explained it away as her need to urinate the minute she felt the least amount of fluid in her bladder....as she was entering kindergarten i asked my pediatrician for a note for bathroom frequency. He was against it, as it would label her...and suggested we wait and see. interestingly she went off to kindergarten and has never looked back. Though here I am with what we now recognize as IC. She is almost 23 now.

I remember how terrified I was for her...I am with Donna...try the other remedies first...I would really want a lot of research on antidepressants in a child that young. just one Mom's opinion.

Keep us posted and watch these boards, as there are other parents here that may weigh in and be more helpful.

[Katrina]

http://www.ic-network.com/forum/showthread.php?t=7562 this link is a pain managment post. The second page has 4 attachments...the last one is a list of ideas for IC pain.....take a look if pain is problem for you.

Some of the things on my list are natural and simple. I know I had colitis at age 8, and I know people with symptoms as a kid that didn't get diagnosed till a teen or 20s ( like me) Hopefully we can help this be easier for your child.

I am so sorry your child has IC.

[ibtracy]

:grouphug: Sending you a big supportive group hug. I think at 32 my life is tough but to be just 6 and have this disease, I'm so sorry. I like the others suggest diet - start making a food journal and track foods that trigger worsening in symptoms. If she likes warm baths - I find these soothing but stay away from bubble baths. Maybe try a warm water bottle.

I would ask her urologist about Pyridium for the burning, it's a bladder anesthetic and really helps with the burning. As for frequency, that's one of the main symptoms of IC. I also would suggest buying the IC Survival Guide in the ICN shop or check it out at your local library or on Amazon.com in the used book section (good bargains there on IC books).

I hope some of this info is helpful. You're a great Mom to seek out help and feel free to email me for support anytime or post on these message boards. The ICN family is terriffic about responding to posts, helping you get information. I wish I could do more, but please consider emailing me okay, I'd love to help a child in need this upcoming holiday season.

:angel: Cyber angel to watch over you and your family and especially your little daughter.

Tracy K.

[ICNJess]

Hi Kathy,

I am so very sorry that your baby was diagnosed with IC. Like some of the others said, it is not very common in younger children, but it does happen. I was 5 when my IC symptoms began, I am 22 now. You can live a normal life with IC, once you get symptoms under control--which sounds like you are doing so. I wasn't diagnosed until I was 20, but the doctors figured I have had it since I was a child. I am sure your girl will be just fine, just hang in there, and big hugs from all her IC sisters. :)

Hugs,
Jess

[Imustpee]

Wow...that's the same age I got I.C...back in the 60's there was no medicine and certainly no knowledge about it...I was told I would "Grow out of it" "Her bladder is small" "There is nothing wrong with her"....My poor parents..poor me.....after time I just got used to the pain and frequency, it was "Normal" for me..I wasn't told what I had until I was 16 in 76...even then all that was offered was D.M.S.O..which didn't work...I would get another opinion if I were you..after all, why can't she start on Elmiron?

[SharonA]

Kathy...I am so sorry your little one has IC. I don't have anything to add to the other's wonderful advice. I just wanted to send you and your daughter some warm and gentle hugs. :welcome:

[dancemomof2]

I can't even imagine being that young and dealing with this. I think I would find another URO to help with her symptoms. Hugs hope you find some ansers

[Ginny]

I am so sorry to hear this. Did they offer any medication to try? Ditropan or Detrol. I don't know if a child could take it. Just trying to think of things that might help and will not make her spacie. It probably would not do much for the pain but would help with the frequency.

Can you increase her water intake? I know it sounds like it would make things worse but after a few days of drinking more it does stop making you go more frequently.

Please stay on the boards and learn all you can. Diet is so important. It will help for sure.

I will be saying some prayers for your daughter.
Ginny

[Kathyjo924]

thank you all so much for the info .Hannah has a appointment a 6:30 pm tonight. What should I ask the Doctor?
Kathy

[Imustpee]

Ask about any of the drug therapies...Elmiron, Ditropan xl..there are others I am sure can add more to this list...whatever you do, stand up for your daughter, she REALLY needs you to do battle for her.......don't let them tell you it's "All in her head" or "She will grow out of it".....I thought for years when I was a little kid that I was crazy...the dr's all said I was fine, there was nothing wrong with me, but why did I feel like I had to pee all the time?....GRRRRR...But back in the 60's no one knew about I.C...So I suffered until I was 44 years old...if you don't get satisfaction from this dr see another, and another...

[ICNJess]

Hi Kathy,

Informational visits with the doc can be overwhelming sometimes. I recommend making a list of questions so that you don't forget what to ask. (I learned this trick long ago LOL)

If it were me, I'd ask about treatment options and side effects since your child is so young, and also, maybe things you can do at home to help her when a flare begins? Maybe questions about the IC diet for her, and how you can work together to manage her pain.

If I can think of any more, I'll be back. Let us know how the visit goes! :)

Hugs,
Jess

[vm]

I would try to do a bit of research (or call JIll at the ICN) to find out what drug therapies have been approved in children. I believe one of the issues is that with the awareness of it in children only just growing --- there haven't been a lot of studies on the different treatments and how safe they would be for growing kids.

[Kathyjo924]

What is the number to call Jill?

[vm]

If you go to the main ICN page: www.ic-network.com and scroll all the way to the bottom you will see the phone number for the ICN Offices. :)

[Jen_Cole2]

Kathy-You are close enough to go to Chicago-there are lots of good physicians at Northwestern, Children's Memorial, ect. but I'm not sure about one that specializes in i.c.. Where did you go today? I hope that your daughter is okay.

[curlycue]

My thoughts and prayers are with you and your family. I hope you find a good uro, cuz that can make all the diffrence in the world. Good Luck.

[Kathyjo924]

I took Hannah to the doctor last night and he told us to take her to Northwestern in Chicago,he also put her on Ditropan XL and told us to give her prelief.
Kathy

[ICNJess]

Hi Kathy,

Northwestern is a fabulous place. My Interstim uro did all his training in Chicago and he is very IC knowledgeable.

However, if things don't work out, and I know this is a very long shot, but Madison,WI is only 2 hours or so away from there, and they have a bladder clinic that specalizes in IC. My uro's partner did all his training there, and said a lot of people come from around the world to get treatment there. Betsie sent me the link, I'll unearth it and send it to you if you'd like.

Hugs,
Jess

[green_the_fish]

Hello :hi:
I'm so sorry that your little girl has IC :(
IC is rare in children, but it does happen. I'm only 15, and I'm being treated for IC.
I think I know the children's book that Rhonda (Dixie) mentioned.
You can find it here: http://www.ic-network.com/coloringbook
The book is really cute, not at all depressing. It's from the perspective of a child who tells the story of their mommy's IC in simple terms. If I were you, I'd print it out from the site, then sit down and read it with your little one. Maybe that will help her understand.
Good luck to you and your child :grouphug:

[Jen_Cole2]

I hope they can get her symptoms under control. I saw Dr. Clemens there and he gave me an elimination diet to try. If you like I can email it to you.

[Stella1609]

I have probably had IC since I was 6 years old, but I went into remission from about age 8 until 12-13. My symptoms came back about the time I started my period and have gradually worsened since then. I was first diagnosed just a few months ago at age 20.

My advice to you would be to try the diet, antacids (like Prelief), and OTC Azo (I started taking this at about age 7, but check with your doctor for dosing) and see if that helps, and then go from there. You don't want to do anything invasive, and the truth is that we really don't know what the long-term side affects of a lot of these medications might be. She has her whole life ahead of her.

Also, if they haven't done a cystoscope yet, DO NOT allow one or insist on anaesthesia. I was 6-7 when I had a cystoscopy and IVP, and I still remember it as one of the most traumatic experiences of my childhood. Those procedures were the reason I didn't seek the help of a urologist until I was 20 years old.

I wish I could offer you more help!!!

Laura

[kelly McC]

I am sorry to hear your little one has IC ! If the diet is not helping I would try another uro. Sending huggs and prayers and hope she gets some relief soon!
Kelly

[Ginny]

I agree with Donna. Please try the diet for her. It makes a big difference.
Also, when you see the doctors please be specific about her hurting when she urinates. I have had IC for 20 years and have never hurt when I urinated unless I had an actual infection. My pain is there all the time but not worse when urinating.

Ginny