4year old girl - could it be IC

[clj]

Wow, I think I am pleased to have found this website.
After doing hours of internet research, the symptoms I have read on IC seem to be what my daughter is experiencing. I will try not to waffle on too much, but here we go: About 12 months ago I noticed my daughter sitting down and rubbing her back - thinking she was difficult to toilet train, I simply thought it was her sign of needing to void. This back rubbing became more frequent. She toilets 8 - 15 times a day, has stong smelling urine and when the urge hits, there is no stopping it. Dampness is also a problem. I have tried to ask her what it feels like and she replies with "pinching, squeezing" and recently has said "it starts in my back, goes round to my tummy, down my legs and up to my head". When she has what we call an attack, she sits in a frog like position, legs are rigid, leans back as she holds her lower back, moves her hands to her lower abdomin, goes scarlett red in the face, grunts and often says Mummy Mummy stop it stop it.
There is no set pattern to these attacks. They are ghastly to see and heartbreaking that I can not do anything for her. Sometimes she wants me to rub her back, other times she screams no leave me. The attacks seem to hit her at anytime, she could be swinging and just drops to the ground.
We first saw our GP in august 07 with this. We have had a paediatrician say it is possibly a low grade infection, not showing up on urine or bloods. Then in Dec 07 she had a positive UTI test. She is on a prophilactic antibiotic and trialing Oxybutinyn to relax the bladder. THere is no doubt in my mind she is in intense pain. In Jan 08 a spinal MRI was done to rule out nervous disorder. This all came back with no problems (yay!). She has had a Renal Ultrasound, once again all good - the Ultrasound was done prior to the positive UTI test. SHe is booked for Urodynamics. The Paediatiric Urologist we have seen seems to think she just has a weak bladder or detrusor instablility. At night she wears a nappy and this is always sodden. I am not at all worried about night time, I want to get the attacks sorted first! She does not wake up at night so am assuming she does not get attacks at night.
If anyone could shed some light I would be so greatful. Of course, no Dr has seen her have one of these attacks and I am starting to think they think it is in my imagination! If they had to look after her for half a day they would suerly be in for reality check! Look forward to hearing from you!

[ICNDonna]

It's possible that what she has is IC, but not necessarily so since some of her symptoms don't sound like it. I hope you get some answers soon.

Warm hugs,
Donna

[SharonA]

Oh gosh...Your post broke my heart. I hope she does not have IC but it is possible. It would probably be a good idea to put her on the IC Diet, just in case. Our diets can contribute greatly with how our symptoms go. Here is the link to it: http://www.ic-network.com/diet/

I also suggest that you bring a pain/voiding diary so you can take something tangible with you when you take her to see the doctor. Here is a link to information about these diaries: http://www.ic-network.com/handbook/voidpain.html

I am so sorry that your daughter is experiencing so much pain. I hope you are able to get answers as to what is causing this pain. (((Hugs)))

[crkshnks79]

I am so sorry your daughter is going through this !!! I have a 4 yr old daughter as well , and I couldnt imagine how heartbreaking and scary this must be for you !!! It could be IC , obviously its not an infection that has lasted this long ?? I think the above suggestions are very good ones , I would also why write down what she eats and drinks , along w the pain and void diaries . Have you asked for the doctors to do a cystoscopy ?? I would imagine that would be very helpful especially when it comes to the bladder ... I hope that they figure this out for her and soon its the worst thing in existence to see your / a child suffer . Ill say a prayer for her and you !! Keeps us posted please !

[motherof4]

I'm so sorry that your daughter is going through this,as a mom also it breaks my heart.I have a three year old that just recently had a UTI and the pediatric uro thinks that it was from being constipated which she always is,could that be your daughters case?I will keep you in my prays and pray that your daughter gets some relief and you get some answers.I also think that it is a good idea to follow the IC diet ,and see if it helps especially if she drinks alot of apple juice or fruit juices as most kids do it could be hurting her even more......

[katjonez]

I hope and pray that you find out something soon. I agree with Sharon A. I don't think it could hurt anything to try her on the diet, accept her taste buts that is. It is not much fun living with IC and the restrictions that it puts on you.
God bless and I hope her attacks come few and far between.

[mom_in_ma]

Get her to a pediatric urologist! The are usually at the leading children's hospitals. My son (while he doesn't have IC, has a overdeveloped bladder and spasm) see's a great doc at Botson Children's. A friend who's child has a similar problem sees the same doc. While the test aren't fun, they can at least help you possibly come up with an answer. I wish you luck. I know it's heartbreaking to have a child who's struggling so much.

[mom_in_ma]

Opp....sorry, I just reread your post and realized that you are seeing a pediatric urologist. You have my full wishes that find out what's happening with your daughter. As I said, we've gone through a similar experience and it's not easy by any means.

[clj]

Thank you all for your well wishes and advise.
No, My wee girl does not suffer constipation - although it does appear, at times, that she has a few attacks leading up to doing #2's. I will research the diet and chart, thanks. Will keep you all posted. : )

[Smokey]

sorry to hear about your daughter my heart just broke into pieces. i pray for her and you that she does not have ic. i agree start her on the ic diet and get rid of all the nasty foods and drinks especially with nasty preservatives. and drink lots of clean of water.

good luck and keep us posted.

[hdb1982]

As a mommy too I know if this were happening to my child this would def. be the last thing I was thinking of but.....can you get a camcorder ready and video tape one of these attacks. That way the next dr you see will have seen what you see almost daily and may see something, in the way she reacts, holds her self etc. Something you or I may not notice but something a trained dr would. If nothing else they would see exactly what you are describing. Most digital cameras have a video record oprtion. Then you could just do a play back on the camera at the drs office. Our digital camera holds like 1 hr of video. Just a suggestion. My baby just turned 5 May 1 so reading this makes me get down and thank God my babes is so healthy. I know you will continue fighting for her and hopefully one day soon you will get answers.

[clj]

Funny you should say to get the camcorder out. Last October I was at my wits end and did just that. It made my GP stand up and take note, then my video footage was displayed to about 5 Dr's at the hospital. I took my little lady back to my GP yesterday. We are continuing on with the Oxybutynin until the Urodynamics testing is done. She has finished the long course of antibiotics so will be interesting to see how we go from here. Maybe the antibiotics has been keeping any infection at bay. Who knows!
It is great to have found you all as I don't feel so alone in this whole battle. So, thank you all once again for taking your time to read and reply. Big hugs to you all.

[clj]

Well, here I am once again clutching at straws as to what is wrong with my girl. Last week we attempted to undergo Urodynamic Studies, but the procedure was abandoned due to her becoming to traumatised. (and that was just not wanting to lie down on the xray table..). My girl underwent a cystoscopy which revealed "Trabeculated trigone and bladder wall. Uretic orifice identified with difficulty due to trabeculation". As I am far from a Dr, I understand that her bladder is constantly tying to empty, but her brain is aware that the bladder is not full, so is stopping it. The Urologist filled her bladder at the time of the cystoscopy but it leaked out immediately. The Urodynamic Study was to reveal exactly what was goin on, but like I said this had to be abandonded. Much to my utter disappointment.

So, the Urologist told me this is nonneurogenic neurogenic bladder and that she will need to remain on Oxybutynin (ditropan) and profilactic antiobiotic for at least two years. As the bladder is spasming and not emptying properly it is a breading ground for bacteria.

Is there anyone out there that knows a bit more information on this? Is Urodynamics usually poorly tolerated by children?

What are the causes of this? I have read lots of stuff off the internet and this maybe adding to my confusion. I would like to state that I have not been hard on her with toilet training. certainly there has been the odd time where I have gotten annoyed with cleaning up yet another accident but am adamant this has not been caused by my over insistance that she be toilet trained!! As if I don't feel guilty enough that she has some ghastly thing going on in her body without reading this is a Learned Disfunction!

I really appreciate any help, advise & support that anyone can provide. Maybe there is another support group out that that you know of??

Many thanks for reading this.

One Sad Mum.

[april ryan]

I honestly don't know much about the subject, but I hope that this is something that can go soon under control..

I'm sure it's not in any way your fault!

This is how I see it, a organ disfuction in such a young child though makes me think:

1. There are genetic causes; is anyone in your family have bladder issues?

2. Psychological cause:is she going to school? Is there something about bathroom habits outside the house you should know about? Is something embarassing happened to her? Perhaps a pychological investigation would be helpful.

Keep us posted... All the best :hi: