Support from teens suffering from IC for my daughter

[Meggy1]

Jill,
We are still working with the doctor to get the correct dosages but as of now she takes:
Elmiron, Atarex, Vesicare and Prelief. She also has lidocaine cream and Tylenol 3 for when she has flairs. We've also sent in a heating pad to school specifically for her that she can use in the nurses office when needed. Feel free to PM me.

[too_young]

teen with IC

I was recently diagnosed with IC and I am 16 and in high school my doctors took me out of school and our working on home school for me. When I went to school I was always looking for the restroom I had IC when i was 14 and didnt know until this year. Maybe you should talk to your daughter and her teachers and maybe put her in home school until her IC is under control. I think your daughter is blessed to have a mother who knows what she is going through-No one in my family even understand what I have


I take effexor-depression/fibromyalgia
prelief
macrobid
oxybutynin
elmiron
tramadol
tylenol 3
heating pad especially at night

[icnmgrjill]

You know.. the BodiHeat Heating pads can be worn discretely under clothing for anyone at work, school, etc. So rather than sending her to the nurses office, you could simply give her a pad that she could just place on her shirt or underwear in the bathroom. Very easy and quick. You can see those in the ICN Shop!

Jill

[Erica1836]

You know.. the BodiHeat Heating pads can be worn discretely under clothing for anyone at work, school, etc. So rather than sending her to the nurses office, you could simply give her a pad that she could just place on her shirt or underwear in the bathroom. Very easy and quick. You can see those in the ICN Shop!

Jill

I use those all the time! They really are discrete. And I'm 23 so I'm sure I don't wear exactly the kind of clothes your daughter does but you can never even tell that I have one on.

[Meggy1]

To Too young. I'm so sorry nobody in your family understands. After seeing what my daughter goes through, reading posts on this forum and other on line information about IC I can't imagine someone your age going through this without support of your family. I'm glad you found the forum where you have people who understand and support you. My daughter was on home bound instruction for two months last school year until they managed to get her dosage correct. She is currently on home bound until we can manage to get the current flare-up under control.
Jill, thanks for the info on the heating pads. I did order some and she loves them! Having the IC shop makes finding products for her so much easier.

[Linda May]

Ic

I will pray that they find a good treatment plan for your daughter my heart goe's out to you both.

[Li.sa]

I've been an IC'er now since I was 14yrs. Was diagnosed with cysto and hydrodistension. My daughter, 18yrs, just over the last 7mths or so has been complaining of alot of the usual symptoms. She's had one or two actual infections but this last time just blood and protein but negative culture. She's got the urgency, frequency, burning etc. I've spoken with a peds uro who said they don't do cysto/hydrodistension any more and that children don't usually get IC, and he would just do the fluids, training, PT etc.
Then I spoke with an adult uro who suggests probably imaging and cysto.

What do you all think? I know what I've been through, but am wondering if there's anything else new.

Tks,

Lisa

[Meggy1]

Can kids have IC? YES!

Hi Lisa,
With not knowing what was available before I can't really say if there is anything new.
From what we experienced before my daughter was diagnosed most doctors don't even consider it when children complain of the symptoms. For my daughter her symptoms started in Oct 09 and the tests for UTI's kept coming back "normal", ultrasound normal so they believed it was all in her head. We even had an ER doctor at a major children's hospital tell us she was fine, that it was all in her head and she was just trying to get out of going to school. The ped urologist at the same hospital didn't believe her pain either, he said she had an overactive bladder (which we always knew) and that she didn't have the pain she was complaining about. The adolescent medicine dr at the same doctor diagnosed her with volvodenia (sp?) gave her a cream but nothing for the pain inside. In Feb 2010, I was lucky to find an ob/gyn doctor who runs a pelvic pain program. They normally don't treat children but he agreed to review her records and then agreed to see her. He diagnosed it right off the bat during the first visit just by her explanations and her answers to his questions.
Anyway, he did put her on low doses of IC meds Elmiron, Atarex, Elavil, prelief. We took her off the Elavil due to side effects and after a few weeks her pain was greatly reduced and she was able to go back to school. Flare returned Oct 10. Dr wanted to do the scope with distension but didn't want to do it on my daughter because of her size. He contacted a ped urologist at a different children's hospital who agreed to work with him, see her and he performed the procedure. Said it was one of the worse cases he had ever seen in a child, that there was not one area of the inside of her bladder that did not contain glomerations So back to medicines and dosing and hopefully we'll get it so she's once again able to go back to school (she is receiving homebound instruction).
Because of my daughters age (12) he didn't want to do anything invasive if he could control it with meds and IC diet. It wasn't until we couldn't control the flare that he decided to do the scope. From what I've come across not many ped urol treat kids with IC because they also don't tend to diagnose it in kids. I'd suggest searching for a pelvic pain clinic in your area or the list from the IC network. Sorry my reply is so long. Hope your daughter finds the help she needs.

[bob04951]

It is such a shame when the younger ones are diagnosed or misdiagnosed. At that age I think we were all pretty much self absorbed, and even your best friend won't "get it." Might want to let her have some counselling sessions if you can to be able to handle her peers, and if I remember correctly, you have your guidance counsellors at school. You may want to speak with him/her personally and privately so they can keep an eye on her and maybe give her a little extra attention without embarrasing her. Worth a shot. Wish her luck, it is tough at that age just to be that age. Jill, wife of Bob

[jvr]

Hi,

First off, it is a bad situation in regards to doctors to be willing to diagnose children with IC. Contacting the ICA is a good start in my opinion. They can give a list of doctors in your area who are willing to treat children. The list I was given wasn't long, but it gave me a good start. My 6 year old has been diagnosed with IC. I was told by UCSF that it wasn't IC. I then chose to go to one of the big guns, Dr. Lowell Parsons at UCSD who diagnosed her within 5 minutes. She is doing much better thanks to diet, Atarax, and Aloe. It's so hard to advocate sometimes, but we are the only ones that can do it.
Meggy, I think I talked about this before, but is there any chance she could try rescue instills? This is what Dr. Parsons wanted to try if the oral meds failed....

Jill:-)

[Meggy1]

Hi, our daughter also suffers from anxiety and OCD so she does have a therapist she sees on a regular basis. She had actually had the anxiety and OCD under control and it had been awhile since she had seen her but we started her going again when she started having the IC issues. Fortunately she has great support at school with the teachers, nurse, counselor and principal. She also has a friend from school that lives in the neighborhood that has also stuck by her. Jill, you had mentioned the rescue instills, our problem with that is her anxiety. She gets herself so worked up about little things that I think it would actually be worse for her at this point. We are in contact with a pain management clinic at a childrens hospital so hopefully this will help.

[jvr]

Hi Meggy,

It's so interesting how anxiety seems to go hand in hand for so many of us IC patients. I also had a lot of anxiety before IC. I've battled with it my whole life. That's so wonderful you have such good support for Megan:-) Sorry, I wasn't trying to be a pest about doing rescue instills. You are her mom and know best. You seem like such a good mom and she is very lucky!

Jill

[Meggy1]

Thanks Jill, actually I appreciated you mentioning the rescue instills, that is what the doctor from Boston suggested as the next step. Unfortunately now that I'm thinking back her doctor did suggest it and she freaked (I think he is kind of afraid of upsetting her and having her cry so doesn't push ) It is great to be able to get honest advice from people that know what she is going through.

[temari67]

Support

Hi there jill. I'm a 16 year old girl who was also diagnosed with IC. Tell her she has nothing to worry about. If she has any questions or needs some support she can always ask.


Thanks