View Full Version : Any advice would be great!
mom of IC gurl
10-09-2004, 11:38 AM
My daughter is 11 years old. She has only been to school 8 days this year because she is always miserable. She is now on a homebound program. It breaks my heart as she seems to be changing before my eyes. She played soccer, softball, rode horses. She was a bundle of joy. Now she never smiles because she always feels like she has to use the restroom. Her lower abdomen is always hurting, when she goes to the bathroom it burns, and believe me, she spends so much time in the bathroom. She can't sleep, and it is hard for her to follow the diet guidelines when she really gets no relief.
Our doctor does recognize that children get IC. She has every symptom except one. The red hemmorages did not show up in her bladder.
Even with that, our doctor still says he believes she has it, but is hesitant to use any kind of IC treatment, except ditropan, without a second opinion. He sent us to a pediatric urologist at Children's hospital who tells us, after seeing my daughter for 15 minutes, that she is "perfectly healthy", she may have bladder spasms, but there is nothing we can do about that, she will just have to outgrow them. Get out and get active again and she'll be fine. UNBELIEVABLE! I have to wonder, would that be his diagnosis if this were his daughter?
We go back to our doctor Monday. I am so afraid that because the 2nd opinion was not what we expected, my doctor will change his tune. With all the information he gave me to view, and the research I have done myself, I KNOW this is what my baby is suffering with, and I want someone to HELP her. Children should not have to suffer with this!
If anyone has any advice on things to do at home, ways to get the doctor to move a little faster, anything, please tell me! It is tearing me up to hear my baby in the bathroom saying she wishes she would just die! My other children are torn because they do feel for her, but then they get short with me because I really struggle with making time for everyone, and trying to keep thier lives as normal as possible.
Any thing, advice, words of support to know I am not alone, and that others have children suffering, any hope at all.............PLEASE
DEFINITELY look at the IC diet if you haven't already. That may make a difference in how your daughter feels. If you look in the ICN Patient Handbook: www.ic-network.com/handbook and look for the diet section it will give you lots of good information.
I have a feeling that your doc, upon hearing about the second opinion, will treat it as such --- an opinion. Hopefully he will still go with his diagnosis and your gut feeling about your child. I am wondering if there is another uro in your area who might be able to help him with some of this.....
Go with your gut. I think it is hard for the docs when the little kids have it b/c there isn't that much information about it in children and about what medications they can safely take. I know there are people here who had it as children and also a few other parents of young kids who have it. I hope they see your message and offer some advice.
I think it is wonderful that you believe your daughter and are actively researching to find answers. I bet that makes SUCH a big difference to her. :kissing: Still, I bet it does just break your heart. :(
Take care and I sure hope to see you around the boards.
10-09-2004, 12:02 PM
GRRRRR..This is the very same thing the Navy dr's told my parents for years!! I started having I.C. symptoms when I was 6, 1966..The dr's said " Her bladder is just small, she will grow out of it"! :rant: Get another opinion and another until you find help!!!! My parents gave up after several dr's said the same thing, altho back then I.C. was not nearly as known as it is now. I went without medical intervention until July of this year..that's 38 years I suffered.... :mad: Don't let this happen to your daughter...fight back and stand up for her..she needs you. She could be on Elmiron or many other meds to give her a better life..Fight back mom , I am behind you 100%!!!!!
10-09-2004, 01:13 PM
Hopefully your doctor will begin treating the IC --- there are many medications available that might help. And if he doesn't, then I'd have to agree that you need to see another doctor and keep seeing new ones until you find one who is willing to help.
I know this is extremely rough on you. I've always said that it's easier for me to be in pain than to see one of my children that way.
Sending warm encouraging hugs,
mom of IC gurl
10-09-2004, 01:25 PM
Thanks so much, atleast now I feel like I am on the right track. I can't imagine how some of you made it through your childhood years without help. I can't look at my daughter and think she's okay. I KNOW she is not. So we will keep moving on until someone does something.
God bless all of you!
10-09-2004, 01:33 PM
Well I can understand how your daughter must feel about school.
My IC symptoms kicked in when I was around 11, I was just starting the 6th grade and I had to go so often that the teacher put me right by the door so I could just raise my hand, she'd nod, and I'd go use the restroom. Most of the students made fun of me, even the teachers did, one teacher nicknamed me "Bathroom King", hehe.. I hate her. *growls*
I saw my childhood Doctor at that time but he said I would grow out of it in time. I went to one urologist but all he did was look at my genitalia, touch it for a moment, than tell me I was ok. So I went undiagnosed for 7 years. I dropped out of school because I couldn't concentrate often because of the pain. IC cost me my high school education and my college dreams.
PLZ DON'T LET THAT HAPPEN TO YOUR DAUGHTER! I imagine it'll be incredibly hard for me to get my education by other means, so plz do everything in your power to get her through this so she can still get her education naturally.
Definitely keep seeking other Doctors/Urologists. If they say she's healthy and not in trouble, than leave his office and find another Doctor until you come across someone that can help.
I went 7 years undiagnosed, I was told I'd grow out of it, I lost my education, and than I finally found a Doctor but they said it was too late, my bladder is dead and now I'm gonna be one of those rare IC cases that have to have bladder augmentation and possibly bladder removal in my future.
I can't stress it enough. DO EVERYTHING YOU CAN TO HELP HER STAY IN SCHOOL. I wish so much I had bared the pain at least two more years to get my High School education at least. :'(
10-09-2004, 01:35 PM
Mom, please keep us posted on your little girl...... :)
10-11-2004, 03:45 AM
I got this link from the IC Network homepage. Is it possible to take her to a doctor that knows more about IC? You might have to drive a distance but you need to get a diagnosis so they can start treating her.
Some of the worse doctors I saw were ones recommended by my Physician. You need to do the research yourself on which doctors would be better for her.
Does she always have burning when urinating? That is a sign of an infection. If I have burning right after urinating I know I have an infection.
10-26-2004, 04:36 PM
Hi all, I just joined...and I can't believe the posts I'm reading...just what my SON is experiencing. Is this primarily a female ailment, or can it be present in boys, too. This has been going on for 3 months with him. He, too, is 11. All of a sudden, he started wetting the bed and experiencing the frequent urination...and I do mean frequent. Then the pains started. The bladder/abdominal pains, then the pain in his penis during and after voiding. Much like 'mom of ic gurl', we went to a pediatric urologist at Children's in Boston, and my son had a cystoscopy, and is on hyosciomine, uristat, and valium - all to 'relax the bladder'. They've just started an antiobiotic 'in case there's an infection in the prostrate'. The pain for him is awful...you can hear him cry from the bathroom. It's eating away at me!
Today, my husband and I started exploring whether it's a diet issue because our son seems worse on school days...when he eats a lot of peanut butter. So, we're going to do more reading and experimenting.
Any help you can give, I would really appreciate hearing from you.
10-27-2004, 02:55 AM
Welcome Joan 14... :hi: ...you will find information and alot of support here. I suggest that you try the I.C. diet and see how much that helps your son. IC is more common in women but men get it too.
mom of IC gurl
10-27-2004, 09:41 AM
Joan14, I am so sorry that your son is experiencing this as well. Things are no better as of now with my daughter. We have been following the ic diet, she is also on ditropan, and tofranil. Next week she is having another hydrodistention (I am sure that is spelled wrong), and our doctor is going to start her on elmiron. We are just desperate for some relief for her. This website has been a God send as now, when we go into the doctor's office, I feel more prepared to ask about treatment options. I want my baby to laugh again, I want her to run and play with her friends, and sleep through the night. I know how you feel about listening to him, it just rips you open when there is nothing you can so to help. I feel like I am slowly watching her spirit disappear. She doesn't look forward to anything anymore. I asked her what she wants as her big Christmas present this year, she looked me dead in the eyes and said, "I want to stop hurting." What do you say to that?
Joan, if you want to email me, my address is firstname.lastname@example.org. I am still learning, just like you, but it would be an outlet to vent.
I am praying for each and everyone of you!
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