# Urinary problems - catheters and Oxybutynin



## Emmea12uk

Anyone got any experience of those?? if so how high is the dose and how much output do you get?

I am so worried the docs have got tom's wrong. the poor man has lost all control over his toilet functions and they dont seem to work anymore at all! Where as before the oxy he worked fine, just :muaha:a little too much.


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## Tegans Mama

As you know Em Tegan has 0.9mls of oxybutynin 3x a day. From her catheter we normally get about 50-60 mls, sometimes up to a hundred and it has increased a LOT lately. She's got her urodynamics a week tomorrow so I suppose we'll find out then. I'd imagine that giving Tom too much oxubutynin could be what is stopping him peeing - like I said to you earlier, he's on the lowest dose reccomended for 5 year olds, not one reccomended for a baby who isn't even one yet.

Did the specialist call you back yet?


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## Emmea12uk

no, a doc called who couldnt really say anything without the notes. she wasnt concerned about the dose and told me to carry on - a consultant will call tomorrow. I have stopped. I was getting 200ml out and the poor thing ws crying in discomfort.:(


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## JASMAK

:hug:


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## Tegans Mama

I don't blame you Em, I think the dose is too high but maybe he is on a different suspension? Not sure on the strength of Tegans, I will look and let you know in the morning x


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## Tegans Mama

its 2.5mg/5ml. Is that the same as Toms?


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## Deb&Matilda

We are waiting for matild ato start this medicine and castheters as they just want her to be done once a day think we are planning starting next months and the medicine too as upto now everything seems normal. But what I have been told from her urlogy doctor is that they havw to be very careful they get the dose just right as it can easily go one way or the way. So I agree with you and I would stop matilda too as long as it doesnt cause any damage.
I have been dreading starting catheterising her but getting used to the idea now x
I was told they usually start at 6 months and now I worried cause everyone on here seems to have started really young. I am only going to be doing her once a day as her kidneys seems to have repaired thereselves from her first scan at 1 day old but she is still on trimethoprim which I increase the dose myself.
Is everyone on trimethoprim x


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## Emmea12uk

hr.lr.07 said:


> its 2.5mg/5ml. Is that the same as Toms?

yep the same!


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## Emmea12uk

Deb&Matilda said:


> We are waiting for matild ato start this medicine and castheters as they just want her to be done once a day think we are planning starting next months and the medicine too as upto now everything seems normal. But what I have been told from her urlogy doctor is that they havw to be very careful they get the dose just right as it can easily go one way or the way. So I agree with you and I would stop matilda too as long as it doesnt cause any damage.
> I have been dreading starting catheterising her but getting used to the idea now x
> I was told they usually start at 6 months and now I worried cause everyone on here seems to have started really young. I am only going to be doing her once a day as her kidneys seems to have repaired thereselves from her first scan at 1 day old but she is still on trimethoprim which I increase the dose myself.
> Is everyone on trimethoprim x

it does sound so weird that they left it so late but i am sure they know what they are doing! tom showed signs of probs. he does use trime - but they never upped thedose until i asked!


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## Tegans Mama

Def too high a dose Em.
We have trimethoprim too x


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## Deb&Matilda

It is a bit weird but i think its prob cause she wasnt showing any signs and for the first 4 monthd we were in hospital anyway with shunt problems they left it I suppose if she would have had problems they would have done it xx


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## Tegans Mama

Tegan's shunt got infected Deb and they still started cath'ing her at 2 weeks old. I think it depends on the severity of the problems hun x


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## Emmea12uk

the consultants at the hospital never called me back!
the urology department returned my call two days later!
None of them were any use, they just sais - well if the consultants thought that was necessary then it is necessary!!

My HV called to check up on me and she didnt think it sounded right either so she spoke to a gp who agreed and they have now halved the dose. I am still not going to continue for a little bit. I think he needs to recover again and I really do want to speak to a consultant!

Bunch of idiots!! It is like they never saw a baby with SB down here!


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## Tegans Mama

Em it is quite possible that they didn't! There aren't many babies about with SB at the minute, they were saying in our hospital that they are quite rare! Our HV hasn't seen one for more than 10+ years and our area has a higher rate of it due to people moving here to be near our hospital x


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## Emmea12uk

our hospital said they have one year - and they are usually bought in from other hospitals. It is because of the amount of mothers deciding not to go ahead:(


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## Tegans Mama

Yeah. :( Its a shame, because they are still babies regardless


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## Deb&Matilda

i agree my hospital said there aint many many now cause people are terminating xxx

i just wish i cud talk to other mums cause my local hospital wrote matilda off and i cant beklieve now they were going to terminate her. i just would love to explain it isnt easy but isnt that bad either xxx just so glad i decided to research before making my decision.


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## Emmea12uk

i am so glad too! I didnt entertain it for a second! For me, it was the same as killing my baby if it was born with a defect - you wouldnt, so why do it after 20 weeks? Of course everyone is entitled to their own opinion and i do respect other people's decisions. I was in the position to look after a child that had special needs.


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## Tegans Mama

I agree, I wish there was something we could do to better educate others and help them understand that while there are hard days, it isn't all bad! We love our babies as much as we possibly could x


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## Deb&Matilda

Lea just wanted to say hope everything as gone ok today xxx
Hope you have had good news but if not try not to worry im sure you will come through whatever is ahead xxxx
I am finding out tomorrow when Matilda's Bladder tests will be xxx
I will stay on line for a bit so if you need to talk just send me a message xxxx


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## Tegans Mama

Hey hun, sorry have only just come online.

Appointment went well - We were told to carry on with what we are doing and have another appointment in a month :) It wasn't as bad as I thought it would be! But the catheter they put up there looked quite large! :( The only advice I have Deb, is to take a bottle with you so if Matilda gets fidgety you can feed her. Tegan was hungry and feeding her worked a treat except she had a load of wind afterwards.


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## Deb&Matilda

Glad your ok xx At SB clinic today I have been told it will be january when she goes for her bladder function tests and the one where they put radioactive stuff in to see in on xrays xx they are also going to start cathers and surpossuters - I hope that is spelt right the things you put up there bum to make them so toilet xx but for time being been told if needed to just keep uping her lacolose anything upto 20mls xx I actually got really down tonight cause it was just all so real but coming round again now xx


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## Emmea12uk

:hugs: those suppositories arent nice - i cant get them in tom. He always has poop up his bum so there is no where for them to go:/

Dont worry about the caths - they just become part of your routine and are easy. I am sure it will all be ok!


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## Tegans Mama

I agree with Em, they are nothing once you get used to them :)


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## Deb&Matilda

thanks girls xx sure i will do xx


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