Reposted for new member

[ICNDonna]

Joan14
Registered User

Son with IC?
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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.

[ICNDonna]

I took the liberty of reposting your message so you will get more replies.

I'd like to say :welcome: to the IC Network. I sincerely hope your son has something that's not IC, but if he does, there are some things you can do to help. You'll find the IC diet at http://www.ic-network.com/handbook/ I suggest you give it a try to see if it helps. Some of us can have peanut butter; others find it to be a problem.

While it's true that most people with IC are female, there are some males who have it too. We have some who post regularly.

How long has your little boy been on medications? They can take time to help, but if it's been more than a couple of weeks, I suggest you take him back to the urologist.

Sending warm encouraging thoughts,
Donna

[work it]

I am so sorry to hear that your son has IC. It's hard having IC as an adult so I can only imangine the frustraion you and your son are having. I sure hope your son finds relief soon. Good luck

[Katrina]

:welcome: I am so sorry your son has IC. :grouphug: I hope you are able to get all the relief he needs. Feel free to come to us with all questions and concerns. Lots of love to you!!!

IC Pain Relief Methods (This list put together by Katrina) Remember I am not a doctor and you should always check with your doc before trying theese. Note that it may take cobining a few of theese to get the help you need.

This list is for when you are already in pain


• Ice/Cold (I believe alternating between hot and cold is best)
o Ice packs
o Ice
o Cold spray water
o In a water bottle
• Drinking almond milk
• Drinking baking soda and water mix or alka selser (about 1 teaspoon baking soda per glass)
Taking alkaselser Gold
• Herbs
o Marshmallow root (althaea officinalis) helps sooth irritation and inflammation due
o Licorice (glycyrrhiza glabra and g. uralensis) good for inflammation and anti allergic but should only be used short term
o Uva Ursi (arctostaphylos uva-ursi) is an antiseptic of the urinary track also used as a diuretic, also for inflammation…also only for short term use
o Black Cohosh (cimicifuga racemosa) not good for me since has similar effects to the hormone estrogen. Is used as a sedative and to relieve menstrual cramps. May have anti inflammatory effects. Avoid large doses.
o Catnip (nepeta cataria) eases menstrual pain, soothes the nerves, and as a sleep aid.
o Chamomile (Matricaria chamomilla) mild sedative, creduces inflammation, relieve menstrual cramps, http://www.ic-network.com/cgi-bin/ustorekeeper.pl?command=goto&file=Foods-Tea.html
• cornsilk tablets are unreal!!!!!
• Drinking a burger king milkshake
• Resting/relaxing (some goes as far as to say laying down….at times I could only lay on my side)
• Acupuncture
• aroma therapy (either in a warm wash cloth across face, in a bath, inhaled from a bowl of steamy water, vaporized on an oil burner, sometimes candles, applied to the skin, or taken orally)
o almond oil
o lavender
o lemons oranges
o all essential oils
o honey
• reflexology
• physical therapy
using a donut pillow
• Yoga mine see , ICN: (http://www.ic-network.com/shop/)
• Prilosec OTC or something...not so much for pain but because it is newly non prescription acid reducer
• Water (drinking plenty of water helps with burning pain and helps dilute urine so that it is less harmful to the bladder wall
• TENS unit Ask your doctor for a TENS unit. A TENS unit is believed to work by providing another source of stimulation to "divert" the brain from paying attention to your bladder. It's based on the spinal gate theory. Some patients find TENS very helpful while driving, or in situations when a pain medication isn't appropriate.
• Migraine Ice Patches
• Tylenol with 4 Prelief (many non prescription meds can hurt the bladder….be careful and watch out for what bothers you) http://www.ic-network.com/handbook/nerve.html
• Topical analgesic…Menthol example ICE Blue Gel
• Heat
o Thermal Care Heat wraps
o Heating pad (http://www.ic-network.com/shop/)
o Thermal care adhesive body warmer (http://www.ic-network.com/shop/)
o Spraying heated water
o a microwaveable pad (http://www.ic-network.com/shop/)
one of hubby's tube socks filled with uncooked rice. I just microwave it for about a minute and it's pretty hot. It's pretty flexible if you're trying to heat in between your legs.
• Extra Prelief (http://www.ic-network.com/handbook/prelieffactsheet.html)
• Taking a shower or Tums if your desperate
• Warm Baths (NOT HOT!!!!) No bubble bath or strong soaps, please! Soft soaps, perfumed soaps, bath salts & bubble baths can be very irritating to an IC patient. However, you can put baking soda in the tub for extra comfort. SITZ Baths Definition: A sitz bath (also called a hip bath) is a type of bath in which only the hips and buttocks are soaked in water or saline solution. Its name comes from the German verb "sitzen," meaning "to sit." I recommend: (a tub divided into two …one half is filled with hot water and the other cold. With part of the body on one side and than switching and back again in quick succession) Recommended 3 times a day for 20 min each
• Foot baths
• Visualization [relax your mind. Make sure you are warm and comfortable, and practice deep long breathing, concentrate on the rhythm of your breathing, as you breath imagine the air going in and out of the painful area (such as the bladder), As you inhale, imagine a warm glow healing the pain, and as you exhale, imagine the pain being expelled. Next imagine your pain as a red ball, now take that wipe it with your washcloth, as you wipe the ball gets lighter and lighter in color, keep whipping until the ball is white.] That was 2 examples do what suits you best.
• Trying things to distract you
o Listening to music
o Watching a movie or TV (some choose to have tapes ready for late night flares)
o Reading
o work on a craft or project
o spending time online
o writing letters
o Working around the house (Do what feels comfortable to you. Don't push it.)
o Being constructive and helping others
• Venting here or to friends
• Hugs
•
• Praying
• Staying positive….believe the pain will end
• Meditating (http://www.ic-network.com/handbook/meditation.html)
• Ask for help if you need it (family, friends, doctors)
• Instillations (http://www.ic-network.com/handbook/instill.html)
o DMSO
o Heparin
o Marcaine
• AZO for Urinary Pain Relief or URISTAT
• Ask for a foot message from your spouse or partner (actually I think it is the receiving one that helps with the pain :)
• Pain meds patch (such as fentanyl)
• Pain meds oral (Remember, the earlier you catch a flare and pain, the easier it is to stop and the less medication it can take to stop it. So, don't wait until you are crying and desperate... because that allows that pain cycle to get firmly started. Try to catch in early!) (http://www.ic-network.com/handbook/painmed.html)
o Oxycontin (Pain med’s are recommendations from other ICers)
o Pyrradium
o Perocets
o Klonopins
o Neurontin
o Codein
• Cold water in a balloon in vagina
• Taking slow deep breaths/other breathing therapies (http://www.ic-network.com/handbook/breathing.html)
• Practice relaxing the muscles near the bladder
• Put some work into lessoning your stress
o Use art to help visualize and express your stress…you can even use it to visualize and than erase your pain
o Spend time with your pet!!
o Play with your children or with children (if you have none of your own)
o Sing (you don’t have to let anyone hear you)
o Listen to a guided relaxation audio tape to relax your body. Commonly available at book stores, we recommend the tapes by Potential's Unlimited (Barry Konicov). If you can't find those, try the Health Journey's series of tapes. [http://www.ic-network.com/shop/]


NOTE: AS WITH ANYTHING BECAREFUL….AND IN RISKY THINGS ASK YOUR DOCTOR BEFORE TRYING NEW PAIN METHODS!!!!!

[CoyoteMystro]

Sorry to hear that your son has IC. My IC started out when I was age 11 too, I was just starting 6th grade so school was incredibly hard.

Long story short, I'm 19 now, and just had bladder augmentation surgery last week and am now at home recovering with two catheters coming out from my chest to drain my bladder with.

*hugs*

Make sure to take as best of care as you can.

[Dixiefireball]

i'm so sorry to read about your son :( my son was in the hosp. last Jan with kidney stones but yet they never found them until he passed them at the time he was 11 also.
he at times still has pains down there at the tip end of his penis I feel so bad for him and take him to the doctor but so far they can't seem to find out the answers.
they think his bowels are backed up which is causing him this pain. I hope they are right but they are also thinking he may have I.B.S and this is causing his other pains he is having.
I so understand how scary it can be to have your child in pain and seem so helpless.
please keep us updated on how he is remember we do care.
Oh p.s please read the website donna gave you. its very helpful
www.ic-network.com/handbook
hugs and prayers being sent to you and your son
Rhonda

[Stella1609]

I've had bladder problems at least since age six, definitely for as long as I can remember. All I can offer you is lots of {{HUGS****! Good luck getting your baby some help.

Laura

[Joan14]

Thank you for all your good thoughts and prayers.
My son has been on medicines for two months now, with no improvement. Actually, things have gotten worse. But, we started the diet two days ago; and have had two days of NO pain. My son is actually skipping around he house! It's great to see him having good times. We've combined this diet with another that I found that affected the bladder, etc. So, it's real extreme...water, some veggies, tuna, pears, and some bread. A few more good days, and we'll start to add foods back one at a time and see what happens. I'll keep you updated.

What interests me is why is 11 years old is such a common age for this to start. Is this something that gets triggered by puberty?

In the meantime, our urologist didn't seem to be interested in how diet could be part of the problem or solution. Have some of you have experienced that same reaction from your urologists?

[Stella1609]

What interests me is why is 11 years old is such a common age for this to start. Is this something that gets triggered by puberty?

Actually, puberty could have something to do with it! A lot of us experience differing symptoms with changes in hormones (decrease/increase with birth control, menopause, menstruation, etc.). I suffered from a reflux when I was younger, but I don't think my IC symptoms began until I started my period (and they started out mild and progressed from the time I was 12 until present).

In the meantime, our urologist didn't seem to be interested in how diet could be part of the problem or solution. Have some of you have experienced that same reaction from your urologists?

I think most of us have had bad experiences with the first uro we saw. The key with IC is to realize that you MIGHT know more than the doctor, and to find a doctor who is willing to listen!

Good luck!

Laura

[mom of IC gurl]

My 11 year old daughter had another hydrodistention done today, I bet you can guessn what they found. We have the concrete diagnosis, that we weren't given the last time, because he did not see hunner's ulcers last time. This time he said, they were horrible. Bittersweet really, we know know for sure why my daughter has been suffering so, but we also know we have a long road ahead of us. She just wants to feel normal again. She wants to play and go to school, see all of her friends again. Her doctor started her on elmiron today, as well as increaded her ditropan. She is also taking tofranil.

Thank you to all of you that share your stories, you have no idea how much it helps!

God Bless,

Suzette

[anxious one]

:grouphug: :grouphug: :grouphug: I am SO sorry to hear about your little ones with IC- I have a daughter and I couldn't stand to think of her in as much pain as I am everyday. It must be heartbreaking.

I would suggest that they DEFINATELY try the IC diet- it DOES make a big difference. When they are a wee bit older they can join the chat and find other people in their position because that's what really helps live with IC.

My heart goes out to you.

Sara

[threewins]

If possible, please contact Dr. George Klauber's office at New England Medical Center. He is a urologist.He is doing a lot of research on children and IC. I would be glad to e-mail you more info if you are interested, e-mail me or Personal Message me. I went through a big run around at Boston's Children's Hospital with no answers, and Dr. Klauber has been wonderful.
I hope your son is feeling ok soon. It is so difficult to watch your child suffer.