neurogenic bladder? Enlarged bladder muscle? Looking for advice please?

[letsgetloud]

Apologies if this is not the correct place to post. I have posted on the 'child health section' but no replies.

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 is on daily low dose anti biotics as he has previously been admitted to hospital a few times, due to blood being in his nappy. He seems to pass blood when urinating when he gets urine infections.

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.

Didnt want your post to go unanswered, i havent got experience with this im afraid. my son has medical problems, one of them being a small overactive bladder combined with a kidney problem that means he wees/drinks an awful lot. hes been on long term daily antibiotics to ward off urine injections as well, they have worked and he hasnt had an infection for 2 years (used to get them monthly). I hope the antibiotics work as well for your son and he doesnt suffer with infections. Such a wee little man, i hope he does grow out of it, but its a horribly long wait for you. xx

I would get a second opinion tbh from a childrens specialist. My cousins little one has somethingthat sounds simular and is under GOSH. He is having his first load of Ops tomorrow.
He has blockage on one side and reflux back into kidneys on other, they have been taking it quite seriously tbh.
HTH

Thanks for replying.

brandy77- thanks for replying and good to hear about a child who is no longer getting the urine infections.
My son had his first one at 4 months. Hoping he will not get anymore. If not then he can get a scan in June to see if there is any scarring on his kidneys.
Is your son on any medication that makes him drink alot of does he drink alot because of medical issues?

lisa= thanks for reply. I keep thinking the consultant is not taking this as seriously as I am. Other times that gives me some hope as I think it can't be that serious then

Think you maybe right about second opinion. Not sure where I would go to get that as son is attending sick kids hospital. Before I go down that route i am going to write to the consultant and ask for an appointment to discuss the findings again.

my sons pituitary gland doesnt send out some of the hormones signalled to various parts of the body, the hormone that tells the kidneys to retain water doesnt work so hes like a hose, what goes in comes straight back out again, then he drinks because hes dehydrated, wees, drinks and so on, nightmare. They took him off his medication to stop the weeing/drinking to investigate his bladder,hence the small bladder being discovered. Hoping he will go back on medication soon as he pees nearly every half hour.

My son is also under GOSH and they have been fantastic, i asked for a 2nd opinion from them when i got fed up of the local hospital and not getting anywhere with them. Perhaps lisa is right and you should request a 2nd opinion, i hope he doesnt get any more infections because they are v.serious in little ones as you probably know. I do feel for you because its a horrible worrying time, especially when they are so tiny. xx

highly recommend GOSH :)

i second that

hope the little ones op goes well tomorow

me too, his my cousins boy but my cousin is more like my brother we grew up so close.
Im going to make the trip to GOSH on saturday and his daddy is coming here tomorrow night for dinner and some company as he cant stay as mum is.

Lisa- sorry should have also said, hope your cousins child's op's go well.

Good to know GOSH is so highly recommended. Don't think I could manage to get there as we live in Glasgow, approx 450 miles away. I also have 3 other children with little support, apart from DH. Obviously ds health is a priority but think firstly, I will try the route of speaking to consultant again. I feel now I am more informed, therefore prepared for another meeting.

If I am still unhappy then I will ask for a second opinion.

Brandy- do you live quite far away from GOSH. How did you go about asking for a second opinion. Did you tell your local hospital that you wanted a second opinion and they referred you to GOSH? Sorry for so many questions.

Hope you son does get medication soon. That vicious cycle must prevent him getting on with things. How do you's manage out and about?

Was your son fine on his medication or does he suffer with side effects from them.

Thanks again for taking time to reply.

Lisa-sorry I didn't see your post above mine.

Hope all goes well tomorrow.

morning, i live an hour away on a train from GOSH so not too bad, with travel to train station and taxi other end its about 1.5 hours. Glasgow is a very very long way away! That would be horrendous for an outpatients apt, ive met people up there who have travelled overnight just to get to an outpatients apt and they are exhausted. I googled specialists in pituitary dysfunction and a professor at GOSH came up, so i went to my gp with his name and asked for a 2nd opinion. The gp was already aware I wasnt happy with the slow diagnosis at the local hospital, it went to the panel who agreed to refer.

Managing out and about is awful, he pees wherever he can and we know where all the local toilets are. We dont go far. I have a plastic bottle in the car which i keep in my bag for emergencies, hes peed in that in changing rooms before. The medication he was on works extremely well, he still has it at night which stops him going through 2/3 nappies. Doesnt have side effects, but its tricky to manage as the doses vary depending on how much he is weeing/drinking (no day ever the same). Hes just started on growth hormone injections 2 weeks ago also, must measure him today

Have a good day, perhaps ring your gp and tell them that your worried, any parent would be, its only natural that you will fret and worry for the next 4-6, reading back to your first message again now it does sound quite a lot to be wrong and left, but if your paed is a urology expert im presuming he is correct. xxx

Lisa- hope all has went well with op.

Brandy-Thanks. Hope you son gets on his med soon and that the growth hormones are working. How did the measuring go?

Going to write letter this weekend requesting appointment with the consultant.

My son had his op on Tuesday but has been having dry nappies since. He did pee tonight and we spoke to the hospital who have said if he stops peeing altogether, to go straight to a&e, and if he is still passing very little to go to the urology ward on monday.

Kept him up late tonight to watch him pee . He managed to get me a couple of times but I have never been sohappy!

So hopefully no hospital visit for a couple of months.