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Moose here - again. Following on from my epilepsy thread.

638 replies

moosemama · 14/03/2013 16:45

Hi folks, we were up to 995 posts, so I thought I'd better start a new thread

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MerryCouthyMows · 20/03/2013 16:24

Now spoken to NEW HV. She says she cannot advise on my childcare issues OR my medical issues, and that I should get back in contact with my practice manager.

So I ring the GP surgery and ask to speak to the practice manager. She's left for the day, and is 'on annual leave until 2nd April'.

So I'm NOT going to get my DLA sorted in time. I'm GOING to end up having to pay back the money DLA have paid me AND the money IS have paid me as severe disablement premium.

What do I do now?

I'm... I don't know what I'm feeling.

In crying. There's nothing I can do.

And new HV wants to 'contact social care (I.e. SS) to 'see what they might be able to do to help'.

OH DO FUCK OFF, THERE'S A LOVE.

And the new HV had no answer as to why my old HV hadn't come out with the new HV to do a handover, like they're meant to.

What's the point any more?

MerryCouthyMows · 20/03/2013 16:24

Now spoken to NEW HV. She says she cannot advise on my childcare issues OR my medical issues, and that I should get back in contact with my practice manager.

So I ring the GP surgery and ask to speak to the practice manager. She's left for the day, and is 'on annual leave until 2nd April'.

So I'm NOT going to get my DLA sorted in time. I'm GOING to end up having to pay back the money DLA have paid me AND the money IS have paid me as severe disablement premium.

What do I do now?

I'm... I don't know what I'm feeling.

In crying. There's nothing I can do.

And new HV wants to 'contact social care (I.e. SS) to 'see what they might be able to do to help'.

OH DO FUCK OFF, THERE'S A LOVE.

And the new HV had no answer as to why my old HV hadn't come out with the new HV to do a handover, like they're meant to.

What's the point any more?

MerryCouthyMows · 20/03/2013 16:24

Sorry for double post.

MerryCouthyMows · 20/03/2013 16:26

Oh, and apparently my old HV wasn't a qualified HV. And every case should have a qualified HV. So why has she been my HV for the last X amount of months?

Confused
LeonieDelt · 20/03/2013 16:52

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LeonieDelt · 20/03/2013 17:05

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LeonieDelt · 20/03/2013 20:50

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MerryCouthyMows · 20/03/2013 21:46

Good luck with the Topamax in the morning, Leonie. And here's hoping that they stop your seizures as well as they did mine.

I'm going to turn in as soon as DD is in bed and DS3 is asleep. Not currently looking like it will be soon as he is currently driving cars on my head. Hmm

LeonieDelt · 20/03/2013 21:48

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LeonieDelt · 20/03/2013 21:48

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MerryCouthyMows · 21/03/2013 00:08

That's looking less and less likely - DS3 STILL awake. VERY awake.

I on the other hand, am employing matchsticks to prop my eyelids open...

LeonieDelt · 21/03/2013 07:45

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MerryCouthyMows · 21/03/2013 08:08

Leonie, I would start today. The conjunctivitis WILL be easily told apart from any eye problems that (are VERY unlikely) to happen as a result of Topamax.

It's SO rare a side effect for Topamax that it wasn't even on the patient information leaflet as an 'extremely rare side effect' until I had my yellow card and had to fill in forms and have a medical with the manufacturers.

Seriously, stop worrying about something that is sooooo unlikely to happen.

Take the damn tablets, woman!!

LeonieDelt · 21/03/2013 10:15

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moosemama · 21/03/2013 12:47

I hope you corrected the woman from the hospital Leonie, I would have said "I am not an 'epileptic', I 'have epilepsy'" sounds positively antiquated in her attitude to me, but them I am mega over-sensitive today. Glad you are going to get the chance to get your cytoscopy done at a bigger hospital though.

I am having a horrible day and feel really pathetic. In fact I just sobbed all the way home from dropping dd at nursery, came in, sat down and sobbed all over again.

I think part of it is probably PMT, part of it is still feeling all over the place about my appointment and what I am going to do, part of it is ds2 going away with school for the weekend and the rest is just sheer exhaustion.

I have hardly slept at all for two nights now. It's taking hours to drop off, then I wake in the small ours and don't get back to sleep, just keep tossing and turning until dh's alarm goes off at 6.00 am. No episodes to speak off but feel generally 'buzzy' and kind of electric, iykwim and have a horrible burning headachey pain deep in my right temple that feels like something is trying to burn it's way out Confused as well as flashing lights and spots and what feels like a developing migraine - and I have two more school runs and a school meeting to do, plus I have to finish ds2's packing and type up a packing list for him.

Dh very kindly text his boss and told him he'd be late in so he could take the boys to school this morning as I was just non-functional. Sat vegetating with Cbeebies babysitting dd for a while, got up, walked in the kitchen and an empty floradix bottle jumped off the drainer and smashed to smithereens. It was one of the giant bottles and it went everywhere, all over the kitchen, the laundry, bathroom and even into the living room - yet there was no-one anywhere near it when it fell. It took forever to find and clear up every last shard of glass and by then my head was pounding.

Dd had lunch, went to the toilet, came in to put her uniform on and deposited to lovely lumps of poo on the living room floor! Shock I was so shocked that I shouted and she was totally traumatised because I never shout at her. Managed to clean her and the floor up, came back and realised it was all over the inside of her jeans as well. Then she told me she hadn't put any pants on this morning, because Daddy didn't get any out for her. Hmm No excuse, she knows where they are in her room, can reach them and has got her own out many times in the past. So of course feeling as I do I snapped at her again and she was really upset.

Made up, had a cuddle and reinforced the whole Mummy loves you even when she's cross thing and she seemed fine, then just before we went to go out, when she was already in her coat etc, she started panicking that she needed the toilet again, making us late. She didn't need to go, but when I went in to check she was frantically wiping her bottom despite not having done anything and looking really worried.

I feel terrible, because we've only just got her over serious anxiety about going to the toilet (and she was going literally every five minutes at one point) since she got upset when another child was injured at nursery and three other children wet themselves afterwards. It's taken lots of support and various strategies to stop her stressing about going and also sitting on the toilet for hours not 'producing' anything and we've only just been able to stop using the timer to time 5 minutes from when she gets on and then she has to get off and leave it an hour before she tries again. Now she's back to stressing and it's my fault for losing my temper with her. Sad

Can't get warm either today for some reason today. I am not generally a cold person, but despite a jumper and a sweatshirt I am shivering. I suppose that's probably hormonal as well.

I feel so pathetically wobbly, all I want to do is go and curl up under my duvet and I can't. Sad

Sorry for the whinge. Blush

OP posts:
moosemama · 21/03/2013 12:50

Lordy, my typing!

That'll teach me for not previewing. Blush

Too many errors to correct - so will just apologise for the lot instead - can't get anything right today.

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LeonieDelt · 21/03/2013 13:12

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LeonieDelt · 21/03/2013 13:23

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moosemama · 21/03/2013 13:40

You see it's odd, because I am the same about the word 'autistic'. It doesn't bother me and I have been glared at a couple of times for accidentally saying it in the wrong company, iykwim. The 'epileptic' thing was just at the forefront of my mind because I read it on the posting terms and conditions on the other forum a couple of days ago - that and the fact I am beyond grumpy today, so likely to react to all manner of things that never usually bother me - blooming hormones!

Hope you've taken that pill now - good luck with it. x

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LeonieDelt · 21/03/2013 14:00

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MerryCouthyMows · 21/03/2013 14:26

My Ex managed to bump into the go sultans that tried to do my colposcopy under local, the one who witnessed all the seizures!

(Ex is a chef at the hospital)

Consultant has agreed to write a statement saying what he witnessed, and that in his opinion, I was having epileptic seizures!!!

GrinGrinGrinGrin

May yet give my bastard GP his comeuppance !!

Counsellor I've been referred to IS a qualified psychotherapist, and to placate my GP, I've agreed to fortnightly visits, starting next Tuesday, when DS3 is out with his dad.

It DOESN'T mean I'm fully accepting a dx of NEAD, but it might help me to cope with what is, essentially a situation that is more than one person can cope with, and give me an outlet for all my stresses.

I'm still going to put in a complaint about my GP to the practice manager, and I'm still going to continue pushing for an ambulatory EEG. I can still go to the counselling sessions as a way of showing 'goodwill'...

Getting somewhere though, with this letter from the Gynae consultant!

Made my day, that has!

MerryCouthyMows · 21/03/2013 14:31

And I'm just printing out the last of my appeal for the Grammar for DS1.

The SenCo at the school did another non-verbal reasoning test and a BPVS test on DS1, and he came out on the 99th Percentile for non-verbal reasoning, and on the 96th Percentile on the BPVS.

Yet he has no social skills, and the school are noticing his rigidity of thought patterns and sensitivity to general classroom noise and his it affects the work produced, which is at a far lower standard (though still far above average - he is ONE MARK off a NC lvl 6 in ALL areas, so is expected to sit the lvl 6 SATS in May) than someone of his high intelligence should be producing.

Because if his sensory issues...

Yet they are adamant he is in no way on the Autistic Spectrum...

The phrase "my arse" springs to mind...

And why is it that the SenCo can find the time to do these tests just 4 hrs after I ask her, yet for DS2, she can't provide him with a writing slope despite promising it 4.5 YEARS ago?!

LeonieDelt · 21/03/2013 16:10

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LeonieDelt · 21/03/2013 16:11

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LeonieDelt · 21/03/2013 16:17

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