enlarged bladder muscle? Anyone heard of this?

[letsgetloud]

Bumping from my post earlier (no replies to it yet)

Consultant described ds1 condition as enlarged bladder muscle. Will now paste other post below.

My 8 month son had a cystoscopy yesterday. The consultant was fully expecting to find a valve in his bladder. Instead he said he found that the muscle in his bladder is enlarged and or fatty. He said this muscle is contracting when it should be relaxing to allow the urine to flow out.

He advised he will probably grow out of this over next 4-6 months. Previous scans show enlarged kidneys and uretra (sp) and that he is not emptying bladder fully.

He will get another ultrasound in 8 weeks and then due a scan in June to check there is no scarring on kidneys. Advised hospital will scan him etc. quite frequently.

I know there are far worse things that could be up with him but I am really quite upset.

Of course, I have looked it up on the internet and found he will need drugs, frequent cathetirisation etc when a bit older, if he doesn't grow out of this.

I don't think the consultant sounded optimistic about my son growing out of this condition.

Has anyone heard of this and if so do you have any advice for me?

Thanks.

My DS4, now 7, has this (as well as other things).

His bladder contracts when it shouldn't, won't let him empty it properly. It is possible to grow out of it but it's not the end of the world if it doesn't - I promise!

There are medications that can be given to stop the unwanted contractions which may be an option. Our son does have to be catheterised every 2-3 hours and wears a catheter taped in place that empties into a bag over night but the night thing is partly because he also produces a massive amount of wee!! He used to get very uncomfortable as he needed to wee and retained urine also increases the risks reflux to the kidneys and infection so it will be monitored regularly.

Please don't worry too much (easier said than done I know!) and feel free to contact me by PM if you want any more info.

X

Forgot to add that DS4 is generally a happy, cheeky pest boy too!

Thanks so much for replying.

I had looked up info on the internet about this and concluded he had a neurogenic bladder. Not sure how I managed to diagnose this since I don't even have a biology standard grade .

Anyhow phoned the hospital and spoke to a nurse in the renal unit. She didn't have my sons notes to hand but advised he wouldn't have a neurogenic bladder as he has no nerve damage.

She advised that my son may well grow out of this as everyone's bladders change on a daily basis. I felt a bit more optimistic after speaking to her.

My main concern is that he has kidney damage. His first infection (that we were aware of), was when he was 4 months old, a further one at 6 months. Both of these presented as him passing blood (instead of urine). This worries me that he has had others but because there was no blood I wasn't aware of them.

Doctors have told me it is unusual for a urine infection to present as blood.

Anyhow he won't get the scan to check for scarring on kidneys until June as that will be 6 months since his last known infection.

nipplesofthenorth(love your name)- How does your son manage in school? I take it you catheterise your son. Does he also take medication for his condition. Are your sons kidneys ok?

Hope you don't mind me asking all this.

Thanks again for taking the time to reply to my post. That was kind of you.

No problem. I was told my DS4's consultant at GOSH that it's pretty rare.

It is possible to grow out of it - as muscle tone improves as children mature then it often sorts itself out.

Does your son have reflux to his kidneys? Sometimes this happens as the retained urine needs to go somewhere and sometimes it goes back up - this it what can lead to scarring as it can allow infection to track back to the kidneys.

Blood in the urine in a common sign of an infection - we usually there's one coming as his wee smells odd (we've become wee connoisseurs!!). When hospitals/doctors check for infection they are looking for blood, protein, nitrites in the urine.

DS4 is catheterised via a stoma in his abdomen called a Mitrofanoff but these are very uncommon - he just happen to have a kink in his urethra that makes regular cathterisation hard. Schools have to provide equal access for all children - ours got funding to provide a helper to deal with his catheters. In terms of other children, they are usually quite fascinated so we have a policy of openess about it all as in the long term it makes life easier as everyone just accepts it as normal.

It hasn't affected his activities. As long as he is 'emptied' every 2 1/2 - 3 hours he does the same as everyone else.

His kidneys aren't perfect but this is largely due to the overall condition that he has (Prune Belly Syndrome). His infections have been managed well and haven't caused too many additional problems. He is on medication for his kidneys as well as a daily antibiotic to reduce the infection risk - have antibiotics (usually Trimeothoprim) been mentioned to you yet? They are usually given once a day in the evening.

I would expect a few more tests. A common one is video-urodynamics. This is where a catheter is inserted and the bladder is filled with a x-ray contrast whilst it is filmed on a real-time x-ray. It's not a particularly uncomfortable test - we have never had any problems with DS4 with it - and you can stay and watch too. It shows the bladder capacity and when it contracts.

Which hospital are you under?

It is good to read that your son is a happy boy and his condition doesn't obviously affect him too much

I think you are right with the openness to anyone who has questions.

My son has been on antiobiotic Trimeothoprim since his first known infection at 4 months. I am panicking that he has had more infections that we are not aware of. He then had another infection at 6 months but touch wood has not had another infection for the past 3 months.

I think the doctor at the hospital meant that it was strange for a child to actually physically pass the blood. As in when urine came out it was bright red and his nappy was covered in blood.

When I questioned this, as I thought it was common for there to be blood in urine with infections, he advised it is common for blood to show up on the dipstick but not for it to be so visible.

I think he has had the last test you mention in your post above. After his first infection he had an x ray of his kidneys in which we were told his kidneys were enlarged. Then a month later he had the one where the catheter is inserted and his bladder was filled (~Dh took him for that one as didn't think I could do that one with him myself). This was when we found out he doesn't empty his bladder fully.

He had a cystoscopy (sp) a couple of weeks ago. We were told they expected to find a valve (which was presumed to be preventing him emptying the bladder). They were going to cut the valve and hopefully then he would have emptied his bladder properly.

After the cystoscopy I was told by the consultant that instead of finding this valve (which is apparently quite common in wee boys) they found an enlarged bladder muscle. He said this was not common, which is what has frightened me.

Thanks for taking such an interest. Think I am going to ask to speak to the consultant again. He wanted to just monitor ds1 for next 4 to 6 months to see if he grows out of it.

I am just not sure I can wait 6 months. My son attends the royal hospital for sick children in Glasgow.

What hospital does you son attend?