My 6 yr old little girl has many of these symptoms! - Interstitial Cystitis Network Support Forum

Christine H · 09-27-2001, 04:10 AM

My daughter's name is Meaghan. She is 6 1/2. She is in 1st grade. Two years ago she started with urgency and frequency. Has been tested for UTI's regularly; have all been negative. She has been on and off Ditropan, which may or may not help, as the urgency/frequency comes and goes. The problem has been much worse recently, however, and she has had "bladder pain" or pain in her "pee pee private" (as she calls it).. I try to have her describe the pain. She says it does not burn. The doctors constantly ask her that. She says, no it hurts. Her bladder starts to hurt AFTER she pees. And last night she was up in the middle of the night writhing in her bed in pain in her low abdomen. (Her bladder I guess)... She has what we believe are food allergies, and we have brought her to 2 allergists, but the testing always comes back negative. However, she has very obvious reactions to food dyes, honey, chocolate. She gets stomach pain, headaches, and vomiting. I asked her urologist at Children's Hospital in Boston if he felt this could all be tied in together, and he said no. This has been going on for over 2 years now and I feel very helpless to help her. Maybe she has this IC??? I have never heard of it until today. I woke up, turned on the computer, typed in Bladder Pain and got this site and I am still astounded that it has never, not once, been mentioned to me by a doctor. Looking for help...Can I control this by diet? We currently keep her away from food dyes, but she had the pain last night.

***ICNDonna*** · 09-27-2001, 04:55 AM

I'm very glad you found this site. Yes, it is possible, but unusual, for a child that young to have IC. And yes, food plays a huge role in controlling the symptoms. There is diet information in the Patient Handbook (scroll to the top of this page and click on the link).

I also have children, all adults now, with food allergies. About the only way to pinpoint food allergies is by an elimination diet --- skin tests show how your skin reacts to a substance, but not how it reacts inside your digestive system.

I think in your place I would ask for a referral to a pediatric urologist. You need to know what you are dealing with before you can really begin learning how to deal with it.

And please let me know how she is doing.

Warm hugs,
Donna

Drama_Queen16 · 09-27-2001, 05:03 AM

Hi Christine,

I'm sorry you're going through this with your daughter! I really feel for her, she is right around the age I was when I first developed IC. I'm only 17 now so I still remember it very well.

I'm not surprised that the doctors have not mentioned IC to you. I was seeing doctors on and off for 7 years before I was finally diagnosed through cysto/hydro when I was 14. Only one mentioned IC, though he did not tell us the name, just that it was a "rare, rare disease that there is no point in testing for because it is unheard of in children." Yeah, right. I'd had the exact same experiences - being tested over and over for infections which always came back negative, ultrasounds, x-rays you name it and nothing ever showed up.

One thing that I think is really important is NOT to let doctors tell you that there is nothing physically wrong and convince you that it is all in her head. That's what happened to me and I was forced to see a pediatrician/counsellor who nearly convinced my parents that I had an anxiety disorder. (which I did not)

There are more and more doctors now who are starting to believe in IC in children. Although having a cystoscopy/hydrodistension, which is the usual way of diagnosing IC, is a painful experience, I think it would be worth it to find a uroloogist who will listen to you and your daughter and go through with it if you decide it's necessary. I hate the thought of children suffering for years without a diagnosis simply because they can't find a doctor who will consider the possibility of IC.

IC usually can't be controlled by diet alone, but it can help a lot. You can find a copy of the IC diet in the patient handbook on this site. It's very challenging to stick to it, but worth it for many people. Chocolate and food dyes, by the way, are definitely two to avoid.

It's great that you've found this website and are learning about IC. I wish it had existed when I was your daughter's age. If you or Meaghan ever need help or just someone to talk to, you can e-mail me (laura@avint.net)

Please let us know if you reach a diagnosis, or something else shows up. If it does turn out that she has IC this website is probably the best source of information that you'll find, so you're lucky you came across it.

Good luck and I hope Meaghan is feeling better soon.

Laura

sonny · 09-30-2001, 02:33 PM

Hello Christine,
Mother to mother ...continue to seek out the best help for your daughter...this disease is very difficult to live with as I have watched my son live with it for over three years...even though my son is 24, and I do not have the disease myself...I try very hard to connect with other ic patients so I can learn all I can ..my heart goes out to you as you try to seek medical help for your daughter..my prayers are with you.
Brenda
Mother

sonny · 09-30-2001, 02:34 PM

Hello Christine,
Mother to mother ...continue to seek out the best help for your daughter...this disease is very difficult to live with as I have watched my son live with it for over three years...even though my son is 24, and I do not have the disease myself...I try very hard to connect with other ic patients so I can learn all I can ..my heart goes out to you as you try to seek medical help for your daughter..my prayers are with you.
Brenda
Mother

ldwall · 09-30-2001, 05:08 PM

My daughter, now 7, also has a lot of the symptoms. She has been given some tests, but not a hydro or cysto. The uro she had at the time refused. They said it was impossible for her to have IC cause she is not 18. Just tell that to the girls here at ICN who got diagnosed before 18.

She has had occasions with blood in her urine, ususally after having to hold it for a super long time. It has only happened twice, but that is the only thing each episode has in common. She has urethral burning, urgency, frequency, and enuresis. She just wets the bed for no real reason. She also has a tendency to not be able to fully empty her bladder at one time. Doc's confirmed this, but they don't know why. She has been on imiprimine and ditropan for her symptoms. But she cannot swallow pills so the imiprimine is out. The ditropan isn't settling with her either.....she doesn't like the taste. You can lead a seven year old to meds, but you cannot make them take it.

She is getting worse. I am going to be taking her to a new urologist as soon as I can, and I will demand IC testing. She is just having to many problems, ahd her anatomy is perfect. Nothing ever shows up on the ultrasounds, urodynamics test, and a few others. So I think it is time to do the hydro/cysto.

If you think she is having problems, be proactive and do what you can to get a doc to listen to you. Don't let them label your little girl as nuts, it will follow her for the rest of her life, just because a doc is too lazy to figure out what is really going on.

Best of luck. Lisa

Teri · 09-30-2001, 05:32 PM

I wasn't properly dx'd until I was 45 but I know for a fact that my first symptoms of IC started by the time I started school, I don't care WHAT your dr says.....I'm walking, talking and sometimes crawling proof!

Your daughter is very lucky to have a mother willing to help. Mine blamed all of my problems on laziness (yea, right, it's laziness that makes a person pee 30 times a day

) I wasn't dx'd until after she died so I never got to tell her 'see, I told you something was wrong with me'....sure would have been nice to get that validation from her.

wishing you the very best....
sending prayers to you and your daughter~

Sunshine8jr · 10-10-2001, 06:12 AM

A little late in posting this. Sorry.
Please let us know how Meaghan is doing.
I hate that any child has to have these symptoms. Know that we all care here.
Please keep us updated.
~tracy

a_mom · 10-21-2001, 06:33 AM

Christine,

I have a daugther Mackenzie, 4 years old, who has all the symptoms of IC - headaches, stomach pain, vaginal pain, frequecy. I know what you are going through - I have yet to have a doctor even look at the IC information, although I bring it faithfully to all dr appointments.

I hear over and over how it is stressed related, and although she is on ditropan, it only helped for about 4 months. She has had the pain and frequency (sometimes as much as 22 times a day)for about a year. We have many sleepless nights when only baths will relieve her pain.

I don't believe it is stress related and now on a search for someone to read the information that the ica has provided. I'm not sure how it all will turn out, but I have to believe for my daughter we will find someone to help us.

I wish you and your daughter luck, and MANY pain free days and nights. If you would like someone to talk to, I can be reached by email at traceyr@flash.net.
A_mom