Is IC possible in very little ones?

[Nonna]

My grandbaby who just turned 2 has ureteral reflux, a not so uncommon condition where the ureters are formed such that the urine can back up to the kidneys and she has to be very careful not to get a bladder infection. As a result, she is on long-term low dose antibiotics and up now had been doing quite well. But lately, she seems to be getting something painful there because she has become hysterical at our attempts to see what's hurting her...she points to her urethra/vagina and cries and cries. She is also extremely afraid of doctors and says, "no doctor, no doctor, because she had to have 2 painful catherizations when they were diagnosing her ureteral reflux. I don't understand why they don't sedate little children, because now she remembers the experience and is very frightened, even to allow us to examine her to see if there's yeast or redness, etc. Since, as her maternal grandmother, I have IC, I was just wondering if she might be facing this possibility at such a young age? Does anyone know of others who have dealt with this? And what do they do with such young ones? Can they take Elmiron? Nancy

[ICNDonna]

It's unfortunate that she had to have painful tests that caused fear for her. My niece has a daughter who had a problem similar to your little one. They gave her a medication to relax her before medical appointments. She's grown up now and doesn't have bladder problems.

Has anyone looked at the possibility that she might have some irritation from soaps, etc.? I have one grown son who was extremely sensitive to soaps. We finally ended up using Neutrogena for his bathing --- and I double rinsed his clothing after washing it in detergent.

If there's any way she can meet some doctors on a friendly basis, I think it would be a good idea. It's sad when little ones are afraid of doctors. :(

Donna

[jvr]

Hi,

Worse case scenario, there are doctors that will treat her. If you do more investigating, such as explore what Donna suggested, etc. and still are concerned...the ICA can send you a list of doctors who will treat IC in children. What I've learned so far is the often diet is the number one defense in treating IC with children. I was told this yesterday in fact by a nurse at a uro's office who treats children. I'm in the middle of looking for a new uro possibly because my daughter's current one just went semi retired. He's a high demand doctor so it just got even harder to get into to see him. I just found out his next appt is November 30. Arggh! Anyway,things like Elmiron, Atarax, Elavil, and rescue instills can be used. Children can usally do really well from everything I've been told and heard.

Jill:hi:

[KarenNielsen]

I got IC when I was 14 and my son started IC type symptoms when he was 8. We went to a wonderful pediatric urologist who did nothing invasive, just some x-rays (KUB), and then had a nurse give him a 2-hour age appropriate course on "bladder hygeine", which was enough to keep his symptoms totally at bay except for a couple more minor episodes. The gist of the teaching was, he had to avoid acidic drinks such as orange juice and soda, avoid the most acidic foods like citrus, had to increase his water intake a lot and void every 2 hours during the day. Since he was older and in school, we bought him a vibrating watch set for every 2 hours to remind him to go to the bathroom and also to drink a bottle of water. This was enough so he felt good never needed the invasive testing.
As he got older, he also had a few temporary episodes of pain at the tip of the penis which puzzled his pediatrician, but now I know that can be a symptom of pelvic floor dysfunction in males.
When he turned 12 (6 months ago), I found out my own 25 years of pelvic difficulties was due to a dysfunction in my pelvic joints - they were so out of place I had one leg an inch and a half longer than the other and didn't know. Turns out I injured my pelvis by walking with a bad gait due to a genetic short 1st metatarsal (Morton's Toe), and my son had inherited this from me and also had pelvic joint dysfunction. I had his pelvis adjusted in addition to mine, and he has never had any kind of symptoms since then.
I also know a little girl, a friend's daughter, who had similar problems at a very young age like your grandbaby, and these turned out to be related to misalignment as well because she was a forceps birth. One thing misaligned sometimes throws off the whole system. She turned out to have a joint stuck in her neck, which her mom figured out because she was also getting headaches; but when the neck was corrected her pelvic symptoms improved. Her Mom reports to me since then, she only has problems if she holds her pee too long: she also has to be made to go every two hours.
That poor little girl also went through invasive testing like catheterizations at a young age.
There is a Mom who posts about her little girl with similar symptoms on one of the pudendal boards; her daughter is getting some pain relief with accupuncture which she accepted pretty well with some coaching, because she realized pretty quickly it was painless.
I have been there, even at 14 having someone shoving catheters up into a painful bladder is a really awful experience.
My point in writing this is, to encourage you to focus on good "bladder hygeine' habits, and take a look at her general gait, posture, and alignment -, maybe even accupuncture would be an option... and hopefully all this will be enough to keep her comfortable at least until she gets older. I think invasive testing on the little ones should be a last resort if everything non-invasive fails.

[jvr]

Hi Karen,

I know I asked you a few questions before about this, but where do you suggest taking a child to have this possibility examined? How did your doctor discover this? Where would you take a child to have their alignment, etc. examined?

Jill

[KarenNielsen]

Hi JVR,
I couldn't remember when it was you asked me previously, so I went into your profile to look at your old posts and found our previous exchange. A Doctor did not discover it; Doctors really do mainly biochemical work and some anatomical work but when it comes to biomechanical work / kinesiology, they are hopeless. The only thing a Doc did for me in this whole process, was I insisted on a pelvic floor PT referral from a neurologist and he gave me one, although he professed to have no idea what she could posssibly do for me.
MY pelvic floor PT actually bothered to look at my gait, leg length, pelvic landmarks, etc and could easily tell they were waaaaay off. These are not always subtle, MD's just don't look for them at all. The little girl I mentioned with the forceps birth, walked bent obviously sideways. The biggest reason anyone misses these things is because they unconsciously process it as "body language". After I was told my right leg was so much longer than my left that I was unconsciously standing with my right hip stuck way out just so the left foot could touch the ground, I polled friends and family. They had noticed all right, but their evaluations of what they saw included, "I thought you had an attitude" (that one from my Dad, LOL), and, "you have a really sexy walk". I was guilty of that myself with the little girl who bent sideways...she was always off playing with my daughter, so I only really got a look at her walking posture when her Mom called her into the house for something and she walked across the yard. The side bend gave her a kind of an "awww, Mom, why do I have to come in?", kind of a look, so I did not realize it was postural and not personality until her mom pointed it out to me.
Not all PT's, but all good PT's, look at posture, gait, and alignment. Most of these kind of abnormalities will not show up on x-rays; they need observation and hands-on work which is PT stuff. My PT could tell I had these issues but was not specialized enough to fix them. She referred me to Jerry Hesch, who is the developer of Hesch Method Manual Therapy. Manual Therapy is a small subset of PT which requires additional training, and Hesch Method is a subset of Manual Therapy PT. Manual Therapists manipulate joints. Personally I don't think anything else is as accurate and effective as Hesch Method Manual Therapy.
The steps I would take if I were a parent looking for misalignments in my child would be, 1st to look up Morton's Toe on the web and check if my child had it, and if so, purchase a book by a Dr. Schuler (sp?) called "Why You Really Hurt", which tells how to correct the bad gait from Morton'e Toe. It requires a cheap alteration to the shoes, and I would have the kid in house slippers when not in shoes, never barefoot, so the correction is always in use. Then I would get a pelvic floor PT evaluation; but make certain the PT is interested in gait, posture, whole body alignment, and palpation of the pelvis, and discussing specific findings, not just concentrating on the area that hurts or prescibing a generic set of stretching exercises. shop around til you find a good PT if necessary.
If the PT finds abnormalities but is not successfully in permanently correcting them, next step is manual therapy and I recommend Hesch Method.
Hope that helped :)
Karen

[squirrel]

Dear Nancy,

I am really sorry your grandkid has to go threw so much pain...
My IC symptoms started at the age of eleven, though I have heard of a survey where the youngest patients were about 2 or 3 years old...
As far as I remember some children are given Elmiron, however on a much lower dosis...though it is not approved for kids...still...a lot of physicians prescribe it

Here' s a link to an article

http://www.jurology.com/article/S0022-5347%2801%2965842-7/abstract

All the best :angel:

[Moonheart]

With a child having the issues that your grandbaby is having I would think that one of the first possibilities that the doctors should explore is whether or not she's been abused by someone. It is a horrible thought and hopefully not the case, but is something that shouldn't be ruled out. We had a similar issue in our family by someone that it would never have been expected of and it turned out to be true. I hope it's not the case for you all, but the possibility shouldn't be ignored.

[mela414]

I started with IC ad a child. Only they didn't call it that back then. They said I had cracks in the wall of my bladder along with urethral stenosis. I had to endure urethral dilitations without any sedation. I was a little older when they started these procedures...probably 9. Prior to that I had all other diagnostic procedures done in the hospital under IV sedation. It's traumatizing and stressful. I would think that things have changed in 40 years! They should be able to give her something to relax....even at age 2.. Discuss this with your dr and see what they come up with. I know they sometimes give benadryl to children to sedate them. Just a thought.

[He11oKitty]

Poor thing! I sympathize with her so much! I'm an adult and I am very traumatized after having a cystoscopy with only a bit of topical lidocane (might as well have been nothing) and undergoing bladder instillations which were excruciating and made me worse for about 4 or 5 months after. We should be asleep or under local anesthetic for these procedures! I need to start a petition or something.........
I wish love, comfort, and healing for your little angel :angel:and may she be symptom free soon and for ever after.:pray: