Support from teens suffering from IC for my daughter

[JenG]

It's been a long time since I have posted on this message board. I was diagnosed with IC almost 7 years ago, and luckily for me I have found a series of treatments that have kept my flares under control and I have learned to live my life in relative normality.

However, last year my daughter, who is now 13 has been diagnosed as well. She is suffering and it is hard to watch, but her doctor and I have been helping her the best we can. Lately she has been depressed about having to live life this way and the lack of support she is getting from friends, teachers, and others who doubt her pain. I want to help but feel it might be better for her to hear from other teens who are going through this.

I am going to try to get her to sign up on the message boards so she can get the support she needs, but is there any other advice I can give her right now? This is so difficult to deal with as an adult I can't really imagine how difficult it must be as a teen, struggling with all of the other issues teens have to deal with.

Thanks for your help,
A concerned mom

[taylormae]

aww so sry

hi im 21 years old now and found i have a IC in march of this year but have had it since i was 17. Right now im going thru depression and lotssss of anxiety and just trying to figure out how to deal with this. Its soooo hard to take in the fact that i will have this forever! I have 2 young kids and a great husband that is as healthy as can be never broken a bone in his life so it is very difficult for him to really understand pain and the amount of pain i go thru. All of my friends are around the same age as i am and ofcourse they cant understand what i go thru at all. It gets hard to make plans or when im around them to even complain about the pain i am in or any of the other sympoms i go thru. Sometimes i feel some people im around dont even believe me or they think its not that bad,its so hard to deal with. I love my kids sooo much and adore doing things with them. But its hard to b the true mom i am when im in severe pain. I try my very hardest tho! I always stay strong and really never complain about not feeling well so i think that right there maybe tells people im OK but in the inside im dying and just wanna break down in tears. I am so sorry your daughter is only 13 and gosh i would think that some meds would even be hard to put her on bc of her age.. I think after the initial shock we will learn how to cope and deal with this somehow..I really feel for what she is going thru and feel so bad bc she is soo young. She should for sure become a member..I know im a bit older then she is but i was a teen going thru this so anytime she can talk to me Im sure with you having IC an being her mommy your all the support she needs!

I hope she is doing well and tell her i said HI OH and i can give you my email is she would like to just talk that way..just message me in private..

[statesboro]

I just want to start by stating that I am a 44 y/o male that won't be able to give you advice from a teenage point of view. Regardless, I still wanted you to know I did read all of what you typed. OK. I can state that I actually know a high schooler in Massachusetts that was diagnosed at kindergarten age. Of course, I have never seen him on here at all. He has not written a letter in a while, but he has written about how some friends don't understand. They just expect him to hangout and be a regular teen, but he actually makes up excuses sometimes. School is not so easy. He does not deal with IC only. One thing that his mother said she has done in the past is to go to the school after learning who his teacher(s) would be and talk to the individual(s) about her son. (and maybe the principal as well) By the way, she can come on here some, too. (if she does chose to) One thing that I would think is that you would be more understanding of her situation than many people because you have got IC as well. She might need some medication to help with depression. (or counseling) Hey! I just know what I read, and it was enough to get my attention that I did want you to be aware I had read it. (and wish I could give a magical answer to all of us right now) Yep!

[minnie mouse]

teens with IC

I have had IC for eight years now. I was diagnosed when I was a teen. It is very hard, because you can not do all the things normally teens do. You always have to worry about the IC getting in the way. Tell her to hang in there. There are many new treatments and research that will someday help. I know the pain can be bad at times, so I know what she is feeling. Hope this info helps.

[taylormae]

eehmm..

wow thats crazy i would of never of thought that could even be possible of getting IC at a kindergarden age or a dr. knowing that IC was it.. I have a 5 y/o who will be in kindergarden soon... YIKES!! that really is crazy tho i wonder how the dr.s came to the conclusion that he had IC...hmm...

[KarenNielsen]

Just as another perspective, I got IC at 14 and am about to turn 39 now...and I consider it in many ways to be a blessing in my life. I have learned to live well with chronic illness, it brought me into a healh care field where I have been able to function with compassion, empathy, and insight. It brought me closer to God and I consider it my ministry to help others live well with chronic pain disorders. What I would like your daughter to know is that I have had IC for 25 years, been married for 18 years, have two children 12 and 6 and would not trade my life experiences for anything - struggles with chronic illness included.
Mom, as far as what you can say or do to make it better, you cannot; it will be hard and she will build character and perseverence in her struggles with it. I feel for you because it hurts so much worse to watch our kids go through things, than to go through it ourselves. A few years ago, my son began to get early symptoms of pelvic floor issues, which we were able to reverse based on what I have learned from my own struggles, but believe me the 1st time he showed symptoms I FREAKED OUT. So I totally relate to you, not wanting your child to go through pain! But as hard as it is emotionally, intellectually you and I both know that it is the difficult things in life that grow us into who we are.
Please communicate to your daughter, that living 2/3 of my life with IC I have had a blessed life so far and so can she

[jvr]

A question for you....

Hi Karen,

I saw one of your posts about your son having pelvic floor issues which you were able to deal with. Do you mind if I ask what exactly you did to help him? I have a 6 year old daughter diagnosed with IC and I have been wondering how I could deal with any pelvic floor issue that may be accompanying it. Any knowledge and/or advice would be greatly appreciated...

Thanks!
Jill

[KarenNielsen]

Hi Jill,
I am happy share my experiences with my son, but unfortunately cannot promise that they have any significance for your daughter because there seem to be so many causes of pelvic floor issues and IC.
In my family, as I discovered in time to save my son from the struggles i have had to deal with, we are prone to joint injury in the pelvis, due to a genetic foot defect that gives us abnormal gait patterns.
The foot defect is Morton's Toe; and while a fair number of practitioners seem to know it exists very few know the impact it can have on the rest of the body, and almost nobody screens for it. Morton's Toe is a short 1st metatarsal. The metatarsals are the five long bones in each foot, that run from your heel to each toe. The metatarsal that runs up to the big toe, is the 1st metatarsal. That is the one that is thick and strong, and is supposed to bear your weight when you walk. In order to hit the ground first as it should, it needs to be the longest metatarsal. If you have Morton's Toe. it is not the longest. In obvious Morton's Toe, the toe right next to the big toe, will be longer than the big toe. But even if the big toe is the longest, what really matters is when you bend your toes down so that the "knuckles" between the foot and the toes pop out - the "knuckle" at the base of the big toe should extend out further than the others. If it does not extend out further than the one next to it, that is Morton's Toe. There is an easy correction you can do in your shoes to keep a Morton's Toe from causing trouble, but 1st you have to know you have it, and I just found out this year that my whole family has it. Some of them just mild problems from it, like foot deformities and leg cramps, but in my cousin, son, and myself, the pelvic joints got knocked out of place. My cousin and I wound up with years of PFD and IC, but as I already said I was able to help my son early enough to solve his problems.
There are other things that can cause pelvic joint problems: connective tissue disorders are a major risk factor. You can google how to ID connective tissue disorders: common signs are being able to comfortably bend back fingers or other joints to an extreme degree, which would cause pain for a normal person.
People without underlying disorders, can also get pelvic injury from an impact such as a fall, car accident, or sports injury.
Regardless of how it happened, if you suspect a child or anyone has a pelivic joint out of whack here are some hints to look for:
Pelvic joint injury can sometimes be very easy to see if you are attuned to paying attention to it. My pelvic joint problems left one lef much longer than the other, and I compensated unconsciously by standing with a hip out. As this injury happened when I was 14, nobody thought I had an injury - my parents interpreted the hip stuck out with hand on hip as "attitude". Anyway, if anyone had bothered to lie me down and compare my heels, they would have seen one leg appeared longer than the other.
My son's legs stayed equal, but he had a funny, shambling gait because his foot on the affected side pointed diagonally, half off to the side, when he walked. If you are seeing anything funny in gait or posture, maybe a hip or shoulder that appears higher than the other when she walks, you should suspect a joint problem underying her symptoms. Also often you would be told by the pediatrician she appears to have a "slight scoliosis", or stiff neck / cannot turn head well, or headaches starting in the neck - due to compensations up the kinetic chain from pelvic injury.
What happened with my son was, his pelvis was injured for Lord only knows how long before I found out what the underlying issues were for my family. So, at age 8 he started getting symptoms intermittantly, signalling he was in for some trouble in the future. When he was 8, I picked him up from school and he was in distress saying, "I have to pee badly but I keep going into the bathroom and I can't pee!" This was actually not the case; he had emptied his bladder when he 1st became uncomfortable and must have been having bladder spasms because he continued to have severe urgency even though his bladder was empty. At this point I had already been living very well with IC for something like 20 years, so even though I was in a panic I knew the best thing to do was to make him drink down a whole bunch of water fast and that's what I did, on the way to the pediatrician. The pediatrician found nothing wrong but I was very freaked out, so insisted on a referral to pediatric urology. They were awesome...they did KUB x-rays but nothing invasive, and a nurse gave him a 2-hour age appropriate tutorial on "bladder hygeine" - such things as increasing water intake, eliminating irritating drinks and foods, using a stop watch to remind himself when to empty his bladder and when to drink more water, etc. After that we greatly increased his hydration level, sending him to school with several bottles of water. He mostly did well but still had some intermittant bladder episodes similar to the 1st one. Then, he started having intermittant episodes of "tip of the penis" pain, which I later found out is a manifistation of pelvic floor problems in males. But at the time, I did not know that and just took him to the pediatrician who gave him some topical creams. The episodes always went away on their own anyhow.
Meanwhile, I had developed a severe pelvic (pudendal) neuropathy and an acute exacerbation of my previously well controlled IC, which sent me on a quest to find better treatment than I got when I was diagnosed with IC way back in the dark ages of the 1980's. I discovered pelvic floor PT and got a certain degree of relief from it, but the PT recognized that I was still struggling with pelvic floor issues because she could tell my pelvis was very torqued. So, she sent me to another PT, Jerry Hesch, who has his own method of PT Manual Therapy (Hesch Method). He was able to pinpoint the issues with my pelvis and correct them. So, then I took my son, and he was also able to correct my son's pelvis.
The difference between me and my son is, he was just starting to develop some intermittant hints of pelvic floor issues, and so when his pelvis was corrected he just stopped having any more episodes of symptoms. I, on the other hand, was walking around with a twisted pelvis for 25 years, and have numerous spastic muscles deep in the pelvic floor, which are entrapping my pudedal nerves. So even though my IC has been great since the pelvic adjustment, and my neuropathies did improve, I still have a lot of PFD and more treatments to contend with. Depending on what is underlying these types of problems in a child, I think they can be more reversible because pelvic floor damage just seems to build upon itself over time.
My son turned out to have a "hypermobile" pelvis - that is, the correction did not stick but his pelvis goes crooked again about once a week, from activities in gym class etc. But, Mr. Hesch taught him a stretch he can do which puts it right back in place. I am not hypermobile; my pelvis was stuck in the wrong place and now praise the Lord it is stuck in the correct place!
For my daughter, who is 6 and also has Morton's Toe, we modfied her shoes to correct the abnormal gait - and I am hoping that is enouugh to protect her from what my son and I have had to deal with. My son and I also correct our funny gait now with properly modified shoes.
So that is our story...possible none of it applies to your situation so if that is the case I am sorry, especially since it is so LONG!
But do keep an eye on how your daughter stands and walks, to see if she might be misaligned...just in case.

[jvr]

Hi Karen,

Oops..I thought I PM'd you rather than posted it as a thread. That is very interesting to say the least. I think I'll check into this a bit further because I think it's always good to exhaust every possibility. I'm confused though...so you still have IC in addition to the pelvic issues? You almost sound like your case is more structural than IC. Are you sensitive to foods and do any meds help you? Did any foods seem to affect your son at the time? I find your experience very interesting...you've sparked some curiousity in me....

Thanks again for sharing,
Jill

[KarenNielsen]

Jen G,
I am really sorry if we have hijacked your thread with this discussion...I did not know whether to answer this latest question via PM or whether to continue here because I know as a Mom you probably have an interest in info in general, in case it applies to your daughter. So please let me know on here or on the PM's if you want me to go PM and take this discussion off your thread...I kind of feel rotten either way!

Jill,
Re your statement, "so you still have IC in addition to the pelvic issues? You almost sound like your case is more structural than IC.":
This is new and interesting info! You can do a lot of reading about it in the pelvic floor therapies section of this Board; and PM me for more...
In the 1980's I was diagnosed by cysto & hydro with a raging case of IC - horrible tiny bladder capacity with dramatic hemorrhage of the bladder wall after minimal filling during the hydro. What was not known at the time, is that for a large number of us IC IS STRUCTURAL. so it is not a matter of, "it sounds more structural than IC" - structural and IC very often go hand in hand. The relationship, as shown by animal studies, is that a neuromuscular dysfunction anywhere in the pelvis can cause a communication to the bladder through neural pathways, which induces a hemorhhagic cystitis. IC is a description of a behavior of the bladder - bladder wall inflammation with pinpoint hemorrhages, but there are several underlying conditions that can cause the bladder to behave this way, and structural issues are one of them. Pelvic Floor Dysfunction (PFD) is present in something like 75+ cases of IC...although in some of those cases, structural issues caused IC, while in others, muscle tension due to IC pain caused the PFD.
There were no meds in the 80's to address the structural components of IC...I was given pyridium, Elmiron, ditropan, and DMSO instills. None were helpful, and the pyridium and DMSO gave me flares. There was no internet; I had no clue about the IC diet until after I was doing so well with self care that I did not bother to try it. BUt it does not seem that me or my son are significantly diet sensitive.
I started to refuse medical care a couple of years after I got IC, which I think was very smart at the time given the quality of care available back then. I did very well with self care - extreme hydration and bladder retraining - healed my bladder wall, increased my capacity, and lived comfortably although the IC was not gone.
I sustained more pelvic injury with pregnancy or birth of my 6-year-old: so wound up with all these new pelvic issues and acute exacerbation. This time, I got my bladder help from PT, not meds. But, I wound up going on meds for neuropathy - I take neurontin, Ultram, and valium. I am not sure if those also have any impact on my bladder or not...all I can say is, my bladder is marvellous, I went 6 hours the other day without peeing before I even realized that maybe I should go! I know on the pelvic floor area of the Board, there is extensive discussion of valium, as it does help a lot of people with IC if their underlying cause is PFD.
I am not sure one becomes "cured" of IC, so when you ask do I still have IC, I would say sure but it's in the greatest remission ever. Now I just wish I could say the same for the neuropathy :P

[Audra0918]

Hi,

I am new on here and read your post about your daughter. I am 19 years old, and was just Diagnosed with IC 3 months ago. It took 2 years before I finally was told to go to a Urologists, who thankfully told me what was wrong. For two years my Gynecologist kept telling me I was having back to back UTI's and just stuffing antibiotics down my throat!

I started Elmiron January of this year, it has worked..but I do still have bad flare ups. I understand how she feels, the pain is unbareable! No one understands what your going through, IC has changed my life! I had to change my diet, I have to work my day around my bladder. There are times where I would cancel on friends because I cant have a good time If I have to make a bathroom stop every 20 minutes, and be miserable the rest of the day. Work is also a hassle, because I constantly call out, or have a Drs appointment and they get upset with me.

Its so crazy how over 700,000 Americans suffer with this condition, and yet there is no AWARENESS for it, no CURE for it, and barely an understanding on how it occurs and why!

Tell your daughter to hang in there, I know it gets depressing to be so young and feel like your trapped.


I am also doing research on clinical trials, we all have to stick with this and try to find a cure or a way to live with this comfortably!

[statesboro]

I just want to give the last person a welcome. Yep! I don't really like to diverge from the original topic, but I want to state that I was diagnosed back in 1997. OK. People were still calling it womens disease. OK. There was less information out about IC; therefore, I just felt lost. Oh! Some of us are trying to raise awareness. Oh, yeah! We don't have commercials mentioning IC on television. OK. We don't hear IC mentioned on the radio, but Jill is trying to organize an IC awareness month in October. Yep! I don't know what all will happen with that, but I would like to have more awareness as well.

[Meggy1]

Teens with IC

Hi, I can totally relate to what you are going through with your daughter. My daughter who was 11 at the time started with the symptoms last October. We went from dr to dr until we found someone who finally diagnosed her with IC and put her on the right medicine combination. Unfortunately until she was finally diagnosed we went through the period that she was missing alot of school, even when she was able to go she normally didn't make it through the entire day. I have had doctors, school counselors, ER doctors and friends telling me that it's her way of getting out of school. Fortunately her school nurse and principal were wonderful and supportive throughout the entire process. We did take her to a psychologist so she'd have someone to talk with that would not be judgemental and she also helped her learn biofeedback to help when she got anxious and/or depressed. My best advise is just to be there for her. Let her know that no matter what anyone else says that you believe her. I also requested a 504 plan be put in place at school. This is part of her file so that her teachers know she has this chronic condition. This helps with the absences and restroom breaks. Good luck with your daughter.

[jvr]

Hi Meggy,

Do you mind if I ask what med combo your daughter is currently on? I have a 6 year old diagnosed with IC. I've found it extremely hard to find other parents who are dealing with a child with IC. Would you mind if I pm'd you to ask you a few questions? So glad to hear your daugther is doing better:-)

Jill

[Erica1836]

Teens with IC

Hi,Jenny. I'm so sorry to hear about your daughter. I'm sure it helps that she has a mother that understands. I have a sister who has chrons disease so it helps to be able to talk to her. As for the being a teen with IC thing...I'm 23 but my symptoms started in high school. I also had a heart problem in high school which was hard to explain to my friends. I also know how mean and bratty 13 year old girls can be so I feel for your daughter if shes having a hard time at school. Its hard to be the odd one out. I still struggle with it at 23 when all my friends are going out to a bar and i'm the only one not drinking, or have to cancel because of a flare. But i can tell you it just helps to know that my mom cares, and knowing she would do anything to take my pain away. I see a therapist and I think it really helps me a lot. You might want to just ask your daughter if she'd like to talk to someone about things because i remember being a teenager sometimes it is hard to talk about everything thats going on with a family member. Hang in there...hopefully your daughter gets treatment soon that works.