Thread: Moms and children with IC
03-17-2005, 08:43 AM #1
Moms and children with IC
Just wondering how many of you out there with kids with IC have IC yourselves as well. I have IC, and we think my mom has had it for years without being diagnosed. We know for sure that she has fibromyalgia and IBS and diabetes and fatty liver disease and she had endometriosis over and over till they did a hysterectomy for her 7 years ago. The reason that I ask is that my son has been complaining of "stomach pain" for a couple of years. We have taken him to a bunch of doctors, but nothing has ever been found. His pain seems to worsen some when he eats certain foods, like tomato based dishes. He also wets the bed often, and goes to the bathroom a lot. Just wondering if I should be trying to convince a doctor to check him for IC.. Any help would be appreciated.
SaraIt is amazingly empowering to have the support of a strong, motivated and inspirational group of people. --"Feel the Fear and Do It Anyway", Susan Jeffers Dx Endometriosis 12/97 Removed and recurring several times until hysterectomy; Dx IC 12/00; Dx PFD 12/02; Dx Vulvodynia 12/02; Interstim 3/28/05; LAVH/BSO 9/12/05
03-17-2005, 09:19 AM #2
I would want to have him checked for IC. Have you tried putting him on the diet?
http://www.sworcare.com/IC%20survey.htm PUF test This quesitonaire is a good way to help distinguish if he should be tested for IC...does he have a high enough PUF score to need to be tested? I myself don't have any family members with ic...but there are definatly certain families where it is common.Faith, Hope, and Love,
I believe God is using me. He uses me for God. Things I gain from all my suffering are meant to help others. I hope I can help you too. Email me or start a chat if you like my help or anything. I CARE!Illnesses: IC,IBS, IBD, GERD, PFD, Epilepsy, Endo, Allergies, RLM,Rapid heart beat, low blood pressure,Gastritis,Gall stones,Tendonitis,migraines, Shingles, Prolapsed pouch,ext. fatigue (current problem) I have seen periods of remission and I have seen them end and return. At this time remission is over and working on getting it back! My hope story http://www.ic-network.com/patientstories/katrina.html
IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
or find me on facebook http://www.facebook.com/kat671?ref=profile
Be the Miracle! & Pay it Forward!
firstname.lastname@example.org please contact me...I am here to help!http://health.groups.yahoo.com/group/ICinWI/ if your from WI please contact me!
03-21-2005, 01:03 AM #3
ic mom with daughter........
Just wanted to let you know, my daughter was dx. with ic about 4 months ago. It took them a while to fine this out. My daughter is 27 years old. And i told her to be checked out by a uro. doctor and she did. Because all the pain a freq. and all sounds like myself. Well she was dx. with ic. I felt so bad for her and wish she wouldn't take after her mom I just was wondering myself how many this happens to. We should see how many it does happen to families this way. I wonder myself.
Hope everyone is having a pain free day!
03-25-2005, 10:51 AM #4
I am petrified that my daughter will get IC. Everybody says it is not herediatary but I don't like the sound of this post. My daughter is 3 and I had to take her to the dr last week with a suspected UTI. She was peeing every 5 minutes. The culture was clear. My stomach is in knots. I COULDN'T COPE IF SHE GOT IC.
SaraSara- 26 year old mum to Claudia (31.10.01- 4 going on 14!!) and baby Alexander (06.01.06). IC patient since horrible UTI 2003...
"Animals are my friends... and I don't eat my friends."
03-25-2005, 12:09 PM #5
Sara, it's not unusual for little girls to have irritation. Try not to focus too much on this. Is she feeling okay now? I hope so.
I have a daughter named Claudia --- my Claudia is an adult now and totally lovable!
DonnaHave you checked the ICN Shop?
http://www.icnsales.com for US & Canada
http://www.icnshop.com for all others
Patient Help: http://www.ic-network.com/patientlinks.html
Diet list: http://www.ic-network.com/diet/2009icdietlist.pdf
You'll find my story at: http://www.ic-network.com/patientstories/donna.html
I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
Anyone who says something is foolproof hasn't met a determined fool
03-25-2005, 01:05 PM #6
I think my mother had I.C before she passed away but never was dx. She passed away from cancer Dec 19 88 they never found out where the cancer came from she was sick for years kind of like a lot of our i.c stories she went from doctor to doctor they kept telling her it was all in head but by the time they found the cancer it was to late.
she has many classic signs of i.c that i never notice until now that i have it. when i look back on our times together I really think she had it.Medicine taken daily or as needed:
1. Heaprin and Marcaine rescue installment 1 to 3x daily as needed.
2. MS.Cotin 100mg 3x daily
3. MSIR 30mg 1 or 2 every 4-6hrs as needed for breakthrew pain.
4. Fentanyl 100 mg Change every 48hrs.
5. Gentamicin 80mg install after each rescue treatment
5 Leviquin 500mg self start as needed.
6. Klonopin 1 or 2 daily as needed.
7. Prosed/DS as 1 every 6hrs as needed.
I have IC, but IC doesn't have me anymore!
03-27-2005, 11:50 AM #7
Thank-you for your post DonnaSara- 26 year old mum to Claudia (31.10.01- 4 going on 14!!) and baby Alexander (06.01.06). IC patient since horrible UTI 2003...
"Animals are my friends... and I don't eat my friends."
04-03-2005, 11:28 PM #8
I have IC (I'm 15) my mom is also on the boards (themom).
So sick and tired of bein' misused
You're taking me down with all your mental abuse
And I said, I gotta get you outta my head
Everybody's always trying to look me over
I just wanna live simple and free
I just wanna get away
Saving all your bullsh*t for another day
I'm the only one that can rescue me from me
2 more years of hellschool.
just ask to be added!
04-04-2005, 06:08 AM #9
I have IC (diagonsed through cystoscopy with hydrodistension and biopsy)
My mom does not have IC (ruled out through a cystoscopy with hydrodistension)
My grandmother might have IC (she has symptoms of IC but has not had a cystoscopy with hydrodistension)current meds:
cytotec 200mcg twice daily
ONLY 3 MEDICATIONS!!! YAY! Would never have dreamed this is possible
dx: hashimoto's thyroiditis 1998
dx: interstitial cystitis via cystoscopy with hydrodistention and biopsy 2003
dx: endometriosis 2003
dx: innapropriate sinus tacchicardia 2005
meds tried but failed:
elavil (6months)- severe tachycardia
elmiron (1yr6mo.)- no improvement, nausea, hair loss, stomach ulcers
a bunch of others
Me and my best friend's baby (also my Godson!)
04-10-2005, 02:14 PM #10
I believe I have had ic all my life, I was a child who weyt the bed til 9th grade and had several in office dilitations as a child ad welll as some kind of bladder surgery..Im 42 and my mom cant remember what the surgery was
I had EXACT same symptoms as your son...and my son too wet his bed til high school. I often complained of tummy aches too. i was never dx with ic...althogh nobody knew about it then. For me the bed wetting killed my self esteem...especiall when I would pee in class since i could not hold it.
I really encourage you to keep talking him to the Dr . until they find out whats wrong. I wish I had had elavil for myself and my son when he was little because that helps kids with bed wetting.
Please let us know how he is getting along and what you find out.
04-10-2005, 05:16 PM #11
My mom has complained with burning, but she says it's because she drinks too much coffee. I wonder though, if it could be IC. Looking back through the years, I can remember several episodes where I had burning pain, but it would always subside in an hour or two. I would just lay off the sodas and coffee, and things would go back to normal. I now think that those episodes were "mini flares", because one morning in April of '02 (I was 38 at the time), I began having the same burning pain that I associated with one of these "flares", and over the course of the next few days, it gradually worsened, and by the middle of summer, I could barely leave my house. Then, it seemed to gradually ease off. I finally found a wonderful uro, and got a diagnosis of IC in Nov of '04.
Anyways, mom has never been to the doctor with her symptoms because it always goes away, just like mine USED to do. I guess something about my genetic makeup just flipped the switch to full blown IC.
SherryLike no one's watchin'!
"Go confidently in the direction of your dreams. Live the life you have imagined" -Henry David Thoreau
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