To soak ds1 in disinfectant?

[hiddenhome]

ds1 has pooed in the bath He's taken a whole load of plastic figures in there, played with them and there's faecal bits floating around in there now.

I've drained the bath, swilled him down with warm water and am now refilling it with disinfectant in.

I'm disgusted

I'm in the NE. If anyone knows a competent paed in the NE then I'd be grateful. I'll have to phone the school nurse tomorrow as I'm out this afternoon. I'll have to psych myself up as this is a road well worn and I don't trust people anymore.

Hello

We've moved this to Special Needs: Children at the OP's request.

Thanks
MNHQ

I've phoned the school nurse and left a message for her to phone me.

Should I stay at the same practice, but just see a different GP? They seem to change every week

What happens if they refer you to CAMHS is that they have some Bulldogs On The Door who are basically mental health workers who are employed to fob you off. Getting access to the Psychiatrist means that you have to get through these bitches, which is virtually impossible I had a major run in with the ones at Durham, so ended up going to Derwentside who were totally useless and just gave us some family therapy and pretended everything was okay It's like one big conspiracy.

What do I have to do to be referred to a developmental paed? I think this is what he needs. I think he has a developmental disorder rather than a psychiatric/mental health problem because he's been like this since he was aged 2.

Could I pay to see a developmental paed privately, then be referred onto the NHS if they accept that he has a problem?

There is a very well respected private paed called Daphne Keen, but her clinic is in SE and I'm not sure how many £££s but others have used her when they have had no joy locally. I would take your list of concerns to a more sympathetic GP and not leave the consultation (cry if necessary) until you have a referral to a developmental paed or someone who can DX ASD. The route for DX seems to differ from area to area, sometimes it is via CAMHS, which seems all wrong because ASD is not a MH problem.

There are some posters on here who have managed to get DX for their DC in their teens. If they don't spot the thread maybe a thread title in SN to that effect may get them to see it? Unfortunately my DS2 was DXed at 3 so I don't have the right experience, but, my god, there's something going on with your DS. He ticks lots of spectrum boxes, reckon.

My DS2 is nearly 13 and still poos his pants. I think it's a sensory issue, he can't feel when he needs to go. He always used to have a big poo, usually in his pants, very soon after a bath. I think the warmth and pressure of the water got things moving. This has got better over the years, but I can empathise over issues with poo...

Hidden you have the right to be referred to a specialist.
See here

You also have the right to choose which hospital to be referred to (so hopefully you will get to see the paediatrician you want (perhaps one recommended by mners)
See here

Keep going Hidden, and don't take no for an answer. Enough is enough.

Good luck, wishing you much strength.

Good grief, the school nurse has phoned and she's coming out to see us tomorrow I described some of the issues and what's gone on over the last few years and she said she's going to arrange a multi-disciplinary meeting (?CAFF) and talk to the community paed and some other people.

Thank you so much to everyone who encouraged me to contact her.

That's brilliant, Hidden. I hope you have finally met a professional who will listen to you. It's like everything, you get some bad ones, some good ones and some great ones and maybe you've been dealing with too many 'bad' ones up until now.

A CAF is a Common Assessment Framework, where you get a lead professional who organises other profs who may be beneficial in supporting your DS. They vary is effectiveness depending on who else gets involved. It may include SS as well as medical bods and therapists and schools/LAs. Really hope thing start to turn around for you. Put all your concerns down in writing, with examples of behaviours/issues so you don't forget anything important.

One thing about parenting, these types of issues are not caused by parenting, but you may still have to learn new ways of parenting your DS. So please don't take it as a criticism if they mention it, but make sure they aren't suggesting you are to blame. Parenting an NT DC is a piece of piss in comparison and you may, if you are lucky, get some good advice on different strategies to use with your DS.

That's really great. Onwards and upwards from here. As Ellen says, write it all down. It's really easy to forget, then you feel daft afterwards as there's a huge list in your head that you wanted to say or ask, but didn't remember. I told you they were fab.

I've made a list of everything we can think off and I'll look out the LANC report we received when he had his private assessment.

I'm scared that we have to deal with CAMHS again

We don't mind learning new parenting strategies as long as he's had a full assessment and we know where we stand. It's not that we want him labelled, but it's far easier to care for someone if you have a diagnosis. We don't have anything to work with atm. He's just a set of signs and symptoms which we struggle to cope with. I feel more like his carer than his mum.

think of sorry

wow thats brilliant news, you know the lists you worked on the day before yestersday can you print/copy them out heavey empasis on the stuff not in your previous dx so she gets a ballenced feeling for things now hes 14 (like the bath thing,at 2 they could get away with saying its fairly normal at 14 they cant) dont just list stuff from the clinic write every difference to other same aged boys you can think of and make sure they know its gone on since it started even if some things started later than others.

keep a copy yourself get her to record in her meeting notes youve handed her a copy and if needed get her to write down any advice for you and what she can help/refer on as that way she wont forget anything you wont forget to tell her,it will give great practice for when you get to a assesment team

Yes, it's all in my computer and dh will print it out soon.

She's also going to talk to ds next week to see how he's feeling about things.

BTW, probably best if you don't mention bathing him in disinfectant!

Well, the nurse came out to visit us this morning and she was very nice and took a full history. Also, dh photocopied lots of info. from school etc. that we've collected over the years. She's going to see ds next week to talk to him and see how he feels about things, then we have to attend this CAF meeting which will take time to arrange because there's going to be a community physio and an OT there. I'm very relieved. I had a whole list of the problems that we encounter and stuff we've noticed and have been living with and she does agree that there's something there. She also took a family history about me and his father. It all seemed very thorough and she seemed to know where we were coming from.

Very encouraging. So nice to be believed! Seems ridiculous but being believed seems often to be a hurdle. Good luck and stay on SN children. We are all pretty friendly and know where you are coming from.

Oh, thank you so much

I'm too scared to be happy because I've been like this before and then it's all come to nothing don't worry, it's just because you're a shite parent, so we'll send you to shite parent classes, then everything will be just peachy They don't seem to understand that we're depressed and fed up because of all the years of struggling.

She did agree that we'd been messed around quite a bit and that he does need a comprehensive assessment - physical, mental, social etc. - whereas we've just had bits and bobs before.

Hidden, im so pleased to read that you have gotten some real positive help. Keep pushing, as someone said, be a squeaky wheel until you get what you need! Well done you - keep posting on here whenver you need help as there will, im sure be someone with the right knowledge and similar experiences to help. Sometimes, you gotta love mumsnet :)

for mumsnet

Hidden, it sounds like you had a great meeting this morning and I hope that this is the start of better things for you all

Hidden, very pleased for you. It's really frustrating trying to get our voices heard. We had to go through DS2's school nurse to get a referral to paed as our GP refused (long story there, but anyway..).

here's hoping that this is the first step towards some good support for both you and your son.

That's fab news :)
Make sure you hide the dettol tho :)

Just an aside - i remember my mum used to bath me in dettol (diluted obviously) i loved the smell and still love the smell of dettol now. I also know someone in his 50s who regularly has dettol baths

im so pleased for you,and very chuffed that you updated us as i was looking forward to getting back so i could ask how it went unmumsnet i know but xxx