newly diagnosed 11 year old

[tripleblessed]

My 11 year old daughter was diagnosed almost 2 weeks ago with IC after having a cysto with bladder dilation. She had been experiencing symptoms for about 2 1/2 months before getting the diagnosis. The problem we are having now is finding a Ped urologist that treats kids with IC or one that could consult with our local urologist. We live in WA state, I tried MaryBridge in Tacoma but their Ped urologist does not treat IC however I could have her see the PA there. Children's in Seattle told me none of their Ped urologists specializes in IC but they made an appointment for her to be seen by their "bladder specialist" also a PA. I am hoping the PA in Seattle has actual experience managing IC in kids but I couldn't get a 100% confident answer from the receptionist. (" I think she does.")
Our local urologist at the minimum wants someone to consult with since he sees adults with IC and not kids. Anyone have their kid on Elmeron? He wasn't sure of the use in kids or the does so he did not prescribe it for her yet. She is currently taking oxybutinine three times a day. We tried 5 mg of amatriptyline but she was so groggy the next morning. We tried pyridium but it didn't seem to help. What else does anyone have their child on?
Any advice would be appreciated.
Thanks~

[ICNDonna]

I'm so sorry your little girl has IC. Has anyone mentioned the IC diet? There's a link to the latest food list in my signature below. Some find the diet helps more than any other single thing.

I hope she feels better soon.

Donna

[tripleblessed]

Thanks for the link for the diet. Our local urologist did mention diet modifications. She is working on keeping a diet journal as well as a bathroom frequency log so we can find any triggers. I let her have a very small amount of pop the other day and that ended up being a mistake. I don't have her ride the bus to school any more since that was a big trigger but she still feels like the mornings are the worse (esp at school.) She has the same things for breakfast even on the weekends but something at school seems to make the mornings bad for her. She is pretty sensitive to positions (sitting still seems to be uncomfortable.) At home she says she feels better because she can get up and move around or sit criss cross in a chair instead of both feet on the floor. She was getting teased at school by one girl but once I found out about it the teacher was notified and that has stopped. She was so worried about having an accident (which thankfully never happened) or getting teased that I briefly pulled her out of school while we were trying to figure out what was going on with her. She was crying almost every night and every school morning and I didn't think the stress on her was helping anything. So I am not sure if the bad mornings are food related, positioning related, or increased stress/worry.
Thanks for your reply

[nanawaggs]

Oh, my goodness, tripleblessed ~ how heart wrenching for you and your little girl. I know Jill, "jvr" here on the ICN has a little girl about 6 with IC and I'm sure you both could exchange things that help this sad situation.

Prayers for all,

[tripleblessed]

Thanks for your prayers, I appreciate them. I knew a little about IC but I kept telling myself she was too young and she was sleeping all night. I feel a bit guilty for being so upset over this diagnosis. I know it could be worse ( I have a friend newly DX with aggressive breast CA and she has 2 kids.) I am thankful it is nothing terminal. BUT I am so heartbroken over the thought of what she has in her future. She already refused to go on a field trip because she was afraid of the bus ride. I have seen what chronic pain can do to people and I don't want her to have to alter her life or miss out on things because of pain or needing to have a bathroom always close by. I don't want her to feel different from the other kids her age (but she already does.) I am trying to accept this and be strong but really I am feeling angry and sad and have not really expressed it much.
Thanks for letting me vent a little.

[jvr]

Hi,

Yes, my almost 7 year old daughter also has IC. Kids can absolutely be tried on Elmiron. My daughter was on it for several months, but I didn't feel like it did a whole lot. It's been hard for me to tell because of her age. Currently she's on 10 mg of Atarax of which I feel has greatly helped her frequency. Also, the diet is vitally important to her feeling good. It was very hard at first, but now it's not as big of a deal for her anymore. We are constantly getting creative with new recipes and things to try:-)
The ICA has a list of doctors who will treat kids with IC. Linda Salin answers a lot of the ICA email and she's great. She has always been very helpful and gotten back to me quickly. You could always also have your doctor contact on of the more more knowledgeable IC kids doctors for guidance. I've heard of some doing this. We originally started seeing Dr. Parsons at UCSD. It was a 10 hour drive for us, so luckily, we found a urologist who treats kids right here in town. If things ever get to complicated for him, he wants us to also continue to see Parsons to help guide him with treatment. It's amazing what some of these IC doctors can do to tinker with treatments to make them more effective:-)
If your daughter is in a lot of discomfort, do you think she might be open to rescue instills? Obviously, less invasive approaches that you could try might be Atarax or Cystoprotek or Desert Harvest Aloe. All are safe for kids.
If you have any other questions, feel free to ask. I'm not expert, but just another mother who understands what you're going through. Please keep up updated on her progress if your comfortable in doing so. Sending you all many thoughts and prayers

Jill

[Meggy1]

I am so sorry to read about your daughter, I know what you are going through with finding a doctor. Since I don't have IC I had no clue what could be causing my daughters pain, I just knew I had to find someone who would believe her and help her. My daughter's symptoms began in Oct 2009 and wasn't diagnosed until Feb 2010. Most of the IC specialists in our area will not treat children with IC and the pediatric urologist they referred us to was the one that blamed it on an overactive bladder and said she was using the excuse of pain just to get out of going to school. I finally found a doctor (ob/gyn) who runs a pelvic pain clinic who agreed to see my daughter after reviewing her records and the IC questionnaire we completed and faxed to him. He started her out on low levels of all meds and we've worked to adjust them as needed. One thing I would suggest is to request a meeting with school personnel to establish a 504 Plan which can help your daughter through the school day. My daughter's plan includes being able to use the restroom when needed, being able to get up and stand/walk in the back of the classroom and allow for alternate seating if needed. When I met with them I also provided them with information from the IC website which helped her teachers, nurse and administrators understand what she was going through. We have also had her on homebound instruction when the pain is really bad and/or the medicines make her too drowsy. Feel free to private message me with any questions. I'd be happy to share what I've learned over the past year and a half. Hang in there.

[tripleblessed]

Thanks for the reply. Her current school has been understanding. Her teacher lets her go without asking and the principal has talked with her choir and PE teacher as well. Since returning to school this week, she has only been going for the 1st half of the day. Next week she'll go back full-time so we'll see how it goes with the PE and Choir teacher then.
I also talked to the principal of the school she'll go to next year. I mentioned the 504 plan but he didn't think I needed to do that. He assured me that he would talk to her teachers and she would never be prevented from going to the bathroom when she needed to go. If she has any issues I will go back and insist on a 504 plan.
I never thought of asking for her to have the ability to stand in the back of the class if needed. She has told me several times that sitting makes the symptoms worse so it makes sense to allow her to do that.
Thanks for the support~

[tripleblessed]

Jill
I also wanted to thank you for your input. Our local urologist is hoping at the least to find someone in state to consult with. It's an odd situation, our area has been without a urologist for about 4 years and we finally got one to come to our area last September. Being new here, he is not that familiar with the support available from Seattle or Tacoma. Who knows, maybe the PA in Seattle will have a fair amount of experience with treating IC and be able to help Rebecca but as much as I keep hearing "we don't really treat it since it isn't that common in kids" I am not holding on to too much hope. I will try the ICA list of Dr's that treat IC to see if I can come up with any options in western washington.
I have not heard of the rescue instills but I can imagine what they are. Thankfully her pain is only if she is unable to use the bathroom. It is something I will keep in mind for possible future management needs.
Thanks for taking the time to reply, I really appreciate everyone's support and compassion.

[skybluesoul]

I used to have my worst frequency in the morning also. I've been on hydroxyzine (generic for atarax) for awihle, and that has helped a lot. It made me very drowsy at first, but I got used to it after a few weeks. I don't know if that's an option for your daughter, but might be worth looking into if you haven't already.

[Linda May]

[tripleblessed]

update

I met a Rep today from a company that deals with urology supplies and as we were talking I mentioned I was having difficulty finding a Ped urologist that treats kids with IC. She immediately told me she knew of one at Swedish in Seattle. She likes this Dr so much that she is taking her own daughter to see her. I called and they can see her on the 15th of June! I was so dissapointed with the fact that 2 hospitals known for taking care of children were not very encouraging over the phone but after talking with this Rep, I have more hope that we can find an excellent physician to help us manage this disease.
I just wanted to share a little update and thank all of you for your support.

[Mothergoose]

I am very glad for you that you have a good lead on a Dr. for your daughter.

When my son was sick that was the most frustrating part, was finding a good Dr. who believed what was actually happening to him. We took him to 2 different gastrointeroligists (sp) supposedly the best in their Field, at 2 different children hospitals. Neither one helped him at all both just blew us off, basicly said he was not, it was all in his head and I was spoiling him by byeing into his complaints. I knew better.

With perseverance I figured out what was wrong with him and got him treated and his quality of life has improved so much, he will have to live with this for the rest of his life, but his quaility of life is back to what would be considered normal to a teenager of his age.

Yes I am bitter at him loosing 6 years of his life to his disease, and bitter to wards these Dr. I wrote to them and let them know my son was actually sick and is fine with treatment.

But I have let my anger go, it is easier to let anger go over wrongs done to you, than done to your child. My son did not let him be bitter about it, he took it all in stride.

You just need to be your child's best advocate and let your child know that no matter what a Dr. says you believe them.

I always took a note book write down all my questions to be asked, and a list of all symptoms your child is having, and I wrote down all response. In my experience poor Dr's will change their stories or what they think each time you see them, so you don't have to rely on just your memory, and can actually call the Dr. on conflicting info if you have it all written down. This can help with confusion after appointments etc.

Let us know how the app goes. I hope this Dr. can help you child and things can improve for her. MG

[jvr]

Hi,

That's wonderful news Tripleblessed! That's also great that you don't have to wait too long until the appointment either:-) I'm hope your daughter gets on a good treatment plan and is feeling better very soon!
Keep us updated! It's nice to network with other parents going through the same thing.
Jill

[Renate]

I am so sorry for your daughter and you! I was just diagnosed and having a hard enough time as an adult and my symptoms came over night just woke up one day with IC! No child should have to suffer this horrible disease and no parent should have to watch their child suffer. I pray you find a good doctor for her and she is able to live a normal and happy childhood and way beyond that!