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SN children

Anyone else with a child who has to self catheterise?

19 replies

Rainer · 29/07/2016 17:36

I've yet to meet anyone in rl and wondered if there was anyone else here?

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Rainer · 29/07/2016 18:11

Even if not here as such even!

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Rainer · 29/07/2016 19:12

That last post made no sense. Does anyone know any children who self catheterise?

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HHH3 · 30/07/2016 11:17

I'm an adult who self catheterises if that helps at all?

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Rainer · 31/07/2016 10:28

Hhh3 thank you for replying. I was hoping for children but bless you!

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EmilieR91 · 03/08/2016 18:02

Yes! My DD is 6 tomorrow and we are in the process of me trying to teach her!!
Can I help you with anything? X

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twmum · 04/08/2016 19:48

I can tell you after tomorrow! My DS (11) has training tomorrow for an under active bladder condition. What's the diagnosis for your child?...

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Rainer · 05/08/2016 00:09

Aha! Hello! No, not really needing help just nice to find some people! My ds has a neurogenic bladder found on cystoscopy last year. Been self cathing for over a year now.

Emilie, has she always had to have it and now you're trying to get her to do independently? That was a very hard time for us as ds struggled a lot.

Twmum, I hope today went well. What sort of training is your ds having? My boy is 11 too! If he needs to in the future we ds would be more than happy to talk (oh how he likes to talk!) To him.

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EmilieR91 · 05/08/2016 11:49

Ah it's great to find other parents with kids who self cath! My dd also has a neurogenic bladder as she has Spina Bifida so she's had to be catheterised from birth.
We catheterise her 3-4 times a day and she wears a pull up in between (to school ect). Teaching really is tough...I mean, she gets the idea, where it goes, ect ect but our problem is that she doesn't understand the hygiene part which is where our issue lies. She had UTI's every month up until May where she was hospitalised with quite severe pyelonephritis and now she has to take low dose of antibiotics every day which isn't ideal. Obviously being only 6 she doesn't understand the implications that all these infections can lead to kidney damage, kidney failure ect. It's a nightmare.
Does your ds suffer from infections?

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Rainer · 05/08/2016 18:42

Never emilie, he had one bleed which was diagnosed as pyelonephritis but in the absence of fever and pain I was dubious and once we knew he badly damaged his bladder was it made more sense. He's an eleven year old boy and hygiene is way down his agenda so very lucky imo. I'm sorry your dd suffers so badly with them. I think girls are more prone I'd imagine?

It's a lot of take on at 6, bless her, although it is her normal I suppose.

He did have hydronephrosis of his kidneys. He'd been complaining about pain on his kidneys and despite several abnormal scans no one was very interested.

Which brand of catheters does your dd use?

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EmilieR91 · 05/08/2016 22:48

Yes it's definitely more common in girls. Your ds has been really lucky then, apart from the hydronephrosis obviously. I hope he continues to avoid them! DD has annual kidney scans but they haven't picked anything unusual up...for now anyway!!
She issues Coloplast Speedicath compact, they are absolutely brilliant. So easy to use. What about your ds?

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twmum · 06/08/2016 14:04

OK so yesterday was NOT a success! Unable to do it at all - terrified at the project of the whole deal so we were sent home to try it ourselves - and still no luck.
Rainer, any top tips (so to speak!)...much appreciated. At my wit's end.

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twmum · 06/08/2016 14:04

prospect not project..!

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EmilieR91 · 06/08/2016 19:29

Is this for ds or dd twmum?

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twmum · 07/08/2016 12:23

DS (11)

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Rainer · 08/08/2016 04:41

Lots of bribery and I'm afraid to say we did use threats of loosing privileges if he didn't try. I know that sounds truly grim but he had a catheter in his stomach and that wasn't coming out till the Catheterising had been mastered and if not done soon would have had to have been changed which he would have found incredibly traumatic.

Once he had got as far as insertion it got mostly a lot easier. It was the mind over matter thing for him which of course makes perfect sense.

Ds couldn't do it the first day either. We had to try for another few days before he first managed it. Lots and lots of encouragement. He preferred the Hunter catheter with a tapered tip as psychologically that felt easier. Emilie, that was what we had been using but we've just switched to the speedI cath although not compact as they don't do in a male paediatric size. We have changed because ds was forgetting to take the gel he needed with the old style and was inserting it without any lubricant. So twmum, there you go, just over a year ago we were where you are and now he'll throw it up without anything to ease it in!

Such a stressful time. It felt awful. You don't want to put pressure on them and yet at the same time you need to as its such a big hurdle to do.

Where abouts are you both? It's so nice to speak to people who have this. I've yet to meet another child who does in rl.

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EmilieR91 · 08/08/2016 06:54

Ah twmum, I can't say that I'm an expert on 'boys bits' !! but what I would say is the same as Rainer- lots of positive encouragement and patience- Although it is hard to stay patient and calm if they have one of those days when they don't even want to try! I found that it wasn't something that was going to happen overnight, it's all about confidence. I would say that if you get really stuck, try getting in touch with one of your paediatric community nurses (if your hospital have them), nurses at your doctors surgery, or urology nurse specialists at your local hospital (if they see children).
We live in the sunny UK, Dorset to be exact. What about you guys? I haven't met or spoken to any other parents of children who self cath. I find myself only talking to my colleagues about it (I am a urology secretary!)

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Rainer · 08/08/2016 09:07

Ha am a nurse! Am in Bristol.

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EmilieR91 · 08/08/2016 20:50

Ah how handy! My dd was born, had surgery and is under the team at Bristol Children's Hospital. Luckily they do a visiting clinic at our local hospital so we don't have to drive every time. Small world!

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Rainer · 08/08/2016 22:34

Oh it is indeed. Glad they come to you, that's been one of the things I've been so grateful for. They are trying to improve ds bladder atm and he's been having weekly appointments. Would be so tricky if we didn't live here.

How are you getting on now twmum?