Bladder weakness

[MandyG]

hi

I did search for this but couldn't find relating posts - sorry if I haven't searched enough

rebecca was 3 in september and still shows no signs of being ready for potty training.

She has eds 3, as do I and her older ssister but none of us are as badly affected as rebecca is.

I have just had our HV out as I asked if we could be assessed for free nappies - she made me fill out a form of when rebecca drinks and when she is wet etc and I had to get a urine sample and fill out a 4 page form etc.

she said the woman she spoke to who deals with free nappies, was not very nice, and in our county you have to have some sort of major bladder problem before they will consder you. You also get rubbish cheap nappies.

I am not happy at this - we calculated it costs £40 amonth for nappies and wipes for becca. I can only use pampers on her cause anything else and she leaks through.

she never ever tells us when she is peeing, will happily sit on a soaken wet/dirty nappy all day if we didn't check her frequently, will pee herself in bath and not even flinch etc etc

her 12 month old sister is aware when she pees etc.

are there any other kids with eds who have had bladder weakness etc?

they told me a gosh that it can be linked to eds.

I dont really want cheap crappy nappies - I really need help paying for pampers - plus what do I do when she grows out of the size 6 pampers?? if I accept the free ones and they are as rubbish as HV says, then that is just adding to extra care I have to give becca - esp. if she is wetting through nappies numerous times day and night??

the woman on phone also apparantly said as I am getting benefits then I cant get free nappies??

just want to hear from others regarding this

thank you

mandy
xxx

[popsmum]

hey hun, thier was a post somewhere recently im sure, but cant find it! may have been within another post hun! oliver had this problem, an we were given napies at 4yrs, 5 per day, although we used more, got them due to diorhea too though, poppy bladder holds, 16 hrs at times, they said up at gosh too its eds related, an if it carries on an causing probs she may need intermittent catheterising!! not fun!

does she have reflux, bowel probs too? kim x

[MandyG]

hiya and thanks kim

rebecca has chronic constipation and has been on daily laxatives since 18 months - she became constipated at 6 weeks old despite being fully breatsfed.

I just dont understand why they cant just give us money for buying pampers etc. I dont want to have extra work with regards to cleaning as I am strecthed to limits as it is.

will have a look for previous post

hope your little ones are ok

[barkingmad]

Hi Mandy,

I dont know why I didnt see these posts before. But yes, my 9yr old daughter has EDS associated bladder weakness, its hard trying to teach her pelvic floor exercises as suggested by her physio, so we are going to talk with GP again. She also has some constipation but not too bad.

My 14 yr old has IBS and irritable bladder too. Tho he has gotten better as he has got older thankfully. He has been constipated since he was a baby, he has to take Movicol sachets everyday as maintenace and then goes the other way with the IBS. Luckily we can tell what is what now..it does get easier as they get older, tho he still has to go to the loo immediately he cant hold it, hopefully this will continue to improve too. he also gets reflux. Prof G and dr. Hasson said it was the EDS.

[Candycow]

Hi, I have 2 children, both with undiagnosed HMS. Both were hard to potty train, but my eldest at 7 is still having problems. His hypermobility is mild, but recognised by a physio, and the biggest problem is in his hips. They are strengthening with physio, but since having the physio his daytime bladder control seems to have tailed off (it's never been good, it's not at all unusualy to have a little dribble before he actually realises he needs a wee) and he's had 3 full accidents in the last week. He doesn't seem to notice at all that he's had an accident, doesn't feel the wetness on his skin from the clothes. He's being seen by the school nurse for bedwetting, but until recently I didn't realise there was a link between HMS and bladder problems. I am now in a bit of a quandry, the nurses deal with general bedwetting around here, but *is* this general bedwetting? Should I be taking him back to the docs and asking them to help too, or continue with the school nurse route, trying the bed alarms etc? I know they only deal with 'standard' cases.

WWYD?

I have more questions about my other son, and possibly me too (I also have HMS) so I am sure I will be back soon, but have to shoot off now. TIA

[DeeNJai]

could you ask the school nurse to refer you to the specialist nurse that deal with children that have bladder and bowel issues as they might be able to help if it. Sometimes the specialist nurse could be called a Continence Nurse. They sometimes will come to your house.
Dee

[Candycow]

I am not sure how it works tbh, but I can talk it through with her, just wasn't sure whether to approach the docs instead. I am seeing her next week, so will talk it through with her. Does anyone have any 'evidence' of associated bladder weakness I can show the physio as we are seeing him next week?

[barkingmad]

Hi CAndyCow.

I would do as DeeNjai said. My daughter is under the Children's Continence Team..she is now on meds for the day time and different meds at night. she is better than she was, although you could say she has room for improvement but they assure me she will be fine as she gets older.

An update on my son..he is fine. No probs with either bowel or bladder incontinence. he still suffers from constipation and IBS symptoms but its all manageable and does not require specialist treatment. He is now 17.

The HMSA would like to hear from forum users who could recommend an urologist who has experience with HMS patients/ please could you email me the details on admin@hypermobility.org

thanks Donna

[Candycow]

Just an update, the school nurse was great, listened to me, and while didn't follow through on suggestions of HMS, did agree there was something more than 'simple' bedwetting going on, but that at the same time, the amount of urine produced at night is a problem. She has given me Desmomelt for night time, and is referring us on to a pediatrician to explore the general bladder weakness further. The Desmo has reduced the volume of the urine, but not completely, so she has now upped the dose, and it's a case of wait for the pediatrician appointment.