When shall we three meet again? The not quite NT, not quite weightloss thread ......

[moosemama]

We were full up ladies, so we finally have our very own weightloss-ish thread!

So ... xray? How did it go?

My foot started to really hurt after me making an effort to try and walk more normally using one crutch. Carried on with one crutch today, but with three school runs, plus two evening school meetings to get to I ended up in tears - in between trying very hard not to say extremely rude words in front of all the kids on the school run!

Needless to say I have now booked a GP appointment for first thing tomorrow morning. Don't have a clue what the GP will do or say about it as haven't seen this particular GP before, but I need them to do something, because I can't carry on like this with all the to-ing and fro-ing from the school every day.

Ds1 has his SALT assessment tomorrow afternoon. Again, haven't a clue what to expect, other than what I've read over on SNs about NHS SALT generally not being up to much. I think it might end up just being a tick-box exercise to cover their tracks for missing it as part of his initial ASD assessment. I'm not expecting any therapy out of it, but would at least like to get a better handle on his level of understanding, how badly the semantic pragmatic element of ASD affects him and what they think we can do to help deal with the abrasive and rude way he comes across (although to be honest that's mainly at home - everyone else says he's delightful and really polite. )

Sitting here wincing at the pain in my foot, knowing - having just got in from the Y4 information evening ten minutes ago - that I have to go out again for the Y6 meeting in half an hour.

Oh blimey. Well, I'm where you were yesterday. It feels much better, so I'm going to leave it for today and see what happens. It wasn't even noticeable at boot camp. (but then it wasn't last tuesday, but bled all day and was sore for the rest of the week). So, I'm going to spend today in denial. This probably means that I will be at the gp tomorrow as well.

I was a bit humphy at boot camp. I kid you not, moose, everyone in this town spends their whole life on a bike or running. Like, everyone. And then they go to boot camp.

And then there's me. I don't know whether to be disheartened or motivated, I swear. I am literally massive in comparison. Rolls of flab. And in any other context, I am not really that big! I was sweating my way through the Pilates core work listening to the woman next door chatting about the 30km run she did at the weekend (and not, like, it was a big thing, she was chatting about her weekend. It seems a fairly common occurrence). Up into the mountains. (beyond the ski hills, actually. You can't get there except on foot or by helicopter). And, oh, it's 30km out, but there's a wee hut up there, so they stay overnight, and then either run or hike back out. Just mentioned like 'oh, I had to pop to the store to pick up some eggs'. And she wasn't showing off. She was just chatting about the weekend. And a few others were saying 'oh, is that the one up by x - we go up there a few times a year, try to get there before it gets snowed in'. And others nodding in agreement.

And I'm still trying to breathe.

It should be motivating. Right?

There is not a single ounce of fat on these women. Not a single ounce. Even their flaming norks are made of steel. And they aren't twenty. Some of these women are older than me.

I know it's lifestyle. If I spent 7 days a week running up mountains, i'd have abs of steel as well. I used to.

On a slightly different note, I had to tell ds about the tooth fairy this morning. He's 10.5, I figured it was time. At least he didn't cry like dd1 did.

Hope the slt appointment goes well and is of at least some benefit... You can just never tell. Dd2's speech is getting worse i think. I'm pretty sure it's tiredness and a wee bit of laziness, but I'm having to get her to repeat stuff a lot, which is kind of depressing.

She's 9 on friday! Scary stuff! My baby!

I'm sure it's not everyone Madwoman, it's just that the people you do mix with at bootcamp are those kinds of people. It just feels like it's everyone, because that's who you are seeing/hearing.

I have a friend who is constantly demotivated by the women she regularly sees at the gym. Friend is just 40, other women are late 50's, late 60's and one even in her 70's. The thing is, that my friend also has two children with SNs, she volunteers for charities, is the chair of one particular local charity and is currently studying for a SNs teaching qualification. She doesn't have the time to dedicate her whole life to the pursuit of rock-hard abs and ultimate fitness, whereas the older women either have much older children (who don't have SNs) or their children have left home. Obsessing about fitness etc is how they fill their days, because they don't have anything else to do.

I don't think I'll ever convince ds1 about 'the truth' about the Tooth Fairy. We went to a museum last year that was collecting children's teeth to give the fairies to build a new castle. Apparently the fairies were then going to let them borrow it to show all the children what they'd contributed to! Bit macabre really, but it totally convinced both dses. You even got a little note to put under your pillow to let the fairy know you had already given them your tooth, so you still got your pay-out!

Is there any chance of your dd getting some SALT input to check if it is just tiredness.

Is she having a birthday party?

I'm finally back from the ridiculous school info meetings and now sobbing in pain. That's two hours of my life I'll never get back. Honestly, same slides for both years and then had to sit through the same Governors' speech twice - word for blooming word.

I've skived two so far. Last one tomorrow night, and I may have something else vair important to do... I did send dh to the one at the new school with dd1, but the rest of it seemed a bit unnecessary. can you sit with your foot in a bowl of warm water to try and ease it? I know technically it's going to do nothing to heal it, but it might make it feel better?

Mm, I know you're right about the life stages thing... There are definitely loads of heavy exercise types here though. It won't put me off, think I needed to offload a bit as it was faintly depressing this morning. That said, AF has just arrived, joy. So apparently a huge whack of my humphiness may have been bog standard PMT and bloating to boot. I'm 41. You'd think I'd have worked it out by now...

PMT always catches me unawares and I'm older than you!

I'm still feeling really hormonal and my chest has decided to expand to ridiculous proportions, which is another worrying sign. I was being terribly blase about the possible pregnancy thing, but just had to choose paracetamol over cocodamol just in case. Suppose I'd better test tomorrow in case they want me to have more xrays. Still pretty sure I'm not, but would never forgive myself if I'm wrong. Of course I've already had 3 xrays done without a lead apron (they didn't even suggest it ) but daren't even think about that just now.

I had X-rays with dd1 before I knew I was pg.

I bet you're not. But I love a baby, unexpected or otherwise. So a teensy bit of me really wants you to be. I always think it's reassuring to think that some things are beyond control. Meant to be, and all.

But I bet you're not. weeks of a broken foot is bound to make you feel hormonal. I don't think I can explain the boobage, though.

My mum had xrays specifically to check if my sister was in there after she lost her twin, so that's somewhat reassuring.

It's boobage, dizziness/fainting episodes, bone-crunching exhaustion, dry mouth, bright yellow wee, bloated abdomen and a lovely case of thrush - which I've only ever had in my life whilst pregnant. If this is the peri-menopause I think I'd rather be pregnant - at least that only lasts 9 months!

Hmm. I have a friend who at 43 went to the docs to get her varicose veins fixed, and discussed the peri-menopause symptoms she'd been experiencing as an aside. You know already I'm going to tell you that she was pg, right?

Hormones are crazy things. I think it's quite common for people to think they are pg, and find out they are menopausal, though, so it could go one way or the other...

All night chemist? Are you brave enough to ask dh?

Well been to GP - big fat waste of time as expected. She refused to listen to what I had to say and declared the pain as being due to the sprain. To start with I could see she was thinking Lisfranc injury, due to the checks she did, but as soon as she saw there was no bruising on the sole of the foot she made up her mind it was just the sprain. (Of course there's no bruising, it was 6 weeks ago ffs! )

Of course having had it rested and raised since 8.00 pm last night it was at it's best this morning, looked a fairly normal colour and pain was massively reduced.

I asked her what on earth was I supposed to do with 3/4 school runs a day and constant pain that leads to agony having trooped up and down to the school so often. She said I need better pain relief. Explained about my stomach, she said she'd give omeprazole with the NSAIDs. Then said I might be pg and she did a deep sigh and looked annoyed.

So, ended up doing a test there and then and it was NEGATIVE! Fortunately all I felt was relief, until she said not all pg show up at 6 weeks if its not first morning urine. Think she's way off there though and am taking it as def not pg.

I wasn't happy with what she'd said, especially the part about xrays being checked over after each A&E shift to make sure there's no missed fractures. Explained that I didn't exactly have much faith in the hospital as they missed a fractured 5th met on me two years ago - even with their 'experts' reviewing the films, as they simply don't take enough angles for a proper assessment.

She said in a very rude manner "Well what would you like me to do then?" at which point I told her outright that having to sit around with your foot in the air for 6 weeks gives you a lot of time to research and I felt that more xrays were needed for a proper assessment to be made. The pain is not the same as the sprain (which healed and stopped hurting a couple of weeks ago) but is identical - but worse - to the pain I had with the other fracture. I also suggested that, being midfoot, a weightbearing xray should have been done.

She then grudgingly agreed to request xrays, but this involves her sending a form to the hospital, who will then send me a letter ! Knowing the NHS, this could take weeks! Asked her what angles she's requesting and she said it's up to them, they may even refuse to re-xray after they've reviewed your previous xrays.

Apparently my alternative is to go back to A&E "but they won't be happy, because it's not protocol".

She said she is convinced it's not broken - clever considering she looked at it for all of two seconds, prodded it until I yelled and commented on how swollen it still is after 6 weeks - and when you consider that she hasn't even seen the xrays, as they've not had my notes over from A&E yet.

Of course she appreciates how hard it is with three children and school runs etc (bearing in mind she was about 10 years old herself and clearly has no children) but what I need is better pain relief - not more xrays.

So, I have come home and sobbed. I knew that was going to happen. I wish I'd gone back to A&E last night when it was absolute unbearable agony now and if it's like that again tonight - that's exactly what I'm going to do.

But hey - at least I'm not pg. Blooming 'ormones!

Oh - I asked if my pg symptoms could be down to menopause and she said I'm too young. Told her I feel a lot older that that at the moment and she asked how old my dcs are.

Done another early pg test just to be sure so I could take some stronger painkillers - negative.

SALT assessment, wasn't an assessment and was pretty much a complete waste of time as expected. Not to mention highly patronising.

The only positive thing is that the OT did attend the meeting and as a result of me saying I was going to pay for a BIBIC assessment re handwriting, she has referred him for a functional handwriting assessment, which will be done in school. SALT has also referred him for some in school assessments, but feels his is 'so bright' (if she said that one more time I was ready to slap her ) that they won't be able to offer any support. Basically, as expected, the NHS only help children with functional speech problems and don't get into social/communication stuff - they leave that to unqualified TAs in school SEAL groups. She also pointed out that he probably knows all the social/communication rules from attending the SEAL group consistently, so would have all the answers in theory, but be unable to apply them in practice - which is true. No help or advice about how to help him with this though, just a statement that he will always struggle with it and we could fork out for extremely expensive social/comm software programmes that might help a bit, if we wanted to.

Secondary visit went well last night and ds seems a little happier about the transition, although we still had tears and anxieties overnight. It helped that the teacher who did the presentation was hilarious and very 'down with the kids' so had them all rolling around laughing. Oh - and ds shouted out 'YESSSS!' when the teacher said they get to blow things up in science labs! Fortunately this delighted the teacher doing the presentation.

I have my Neuro appointment in a couple of hours, so yet more useless NHS based waste of everybody's time.

Back from neuro. Intentional tremor is apparently nothing to worry about. Same with the painful pins and needles that shoot down my back, arms and legs. All non-specific apparently.

Upshot of the appointment is that I no longer have a working dx of MS, as they are pretty sure that's not the reason. Neuro said that they feel they eliminated all the scary stuff, but have no explanation for the symptoms.

I have been put onto annual review, with the same caveat, that if I suffer a major event I will be admitted straight away for repeat tests and treatment. Failing that, if my symptoms continue and I carry on getting new ones, they may want to repeat my tests in a couple of years time.

She said basically where I am now would fall into the category of "whatever the fashionable dx is at the moment, be that fibromyalgia or ME". She doesn't agree with giving people these dx, as she feels they are just catch-alls for undiagnosed/unidentified conditions and often people with those dx end up with an MS dx at some point in the future, when the clinical signs are identified.

No advice on how to manage my symptoms, just to keep on keeping on really.

I did ask about whether EDS could be a possible explanation for my lesions and was quite surprised that she thought it was a valid question. She went back through all my blood results and markers with me and said she felt it wasn't a factor, but it was definitely worth me asking the question.

You must just want to lie under a duvet and ignore the world for a few days. What a complete mixed bag of diddly squat, moose. I'm exhausted for you.

I suppose it's good news that no clinical dx for you. But enormously frustrating that you have butted up against the arse end of medical knowledge. 'erm, well, we don't really know.' It's always a bit of a shock that 'science' is actually little more than best guesses based on a couple of clues. Have you looked into any of the fibromyalgia groups? It might give you some coping strategies that you haven't tried, even if it isn't exactly 'right'... (I'm practically weeping over the 'whatever the fashionable dx is' line though - ain't that the truth. I feel ds1 fits into that category exactly.)

I posted a huge post yesterday in response to your x ray/ pg thang, but it isn't here! No idea if I've put it on another thread accidentally... Have been having ishoos with 'threads I'm on' not being up to date and stuff, and can't see it. I doubt it was that interesting, so I won't rehash!

Re SLT - has he had a full Ed psych assessment, moose? (a full one, including iq and academic testing as well as diagnostic stuff?) you might get some better ideas from the psych?

Dd2 has a rerun next month with all of the new profs on the city, so they will be doing a SLT baseline again. I'm fully aware it will be a waste of time, but we'll go and smile nicely.

Thanks Madwoman.

I'm fairly philosophical about it all, it's pretty much what I was expecting. Basically, I've had this 'whatever it is' my entire adult life, the symptoms have increased/developed over the last couple of years and will probably continue to do so, but until they are bad enough to be considered major, no-one can or will do a thing about them.

I've always coped/managed/paced, read/researched the best ways of managing things and will carry on that way.

Ds has had a full EP assessment, including WISC assessment, which showed verbal comprehension as above gifted and talented levels. Unfortunately, this means that they don't feel he has any SALT needs, when in reality he has lots, but they come under the social communication side rather than verbal skills, iyswim. He does have some functional language issues that they are aware of. He pronounces lots of words oddly, because he is very literal with phoenetic rules, he also struggles to some extent with semantic pragmatics, but they said we have done such a lot to support his understanding ourselves that he is not bad enough for NHS support. They are going into school to observe and assess, but she pretty much told us there and then that he won't be getting any support, although they might offer some advice to his teachers.

Honestly, education, health etc it all feels like such a lot of wasteful form filling, tick boxing crap at the moment. I am so sick of useless appointments. Grrr!

Did the psych come up with a list of suggestions specifically to deal with that, or not? Too specialist? Maybe pushing for the 'advice for the teachers' is all you can do at the mo on that side? Have they got any social communication targets on IEP? (I know I probably know all this stuff, lol. It's early and I'm only on my second cup of tea...)

Tick boxing is right. I think it comes in waves, thou - you've had your allowable moves forward for the time being, so now you get to mark time.QQ It's very frustrating.

Dd2's teacher called last night as they have a field trip today, hiking. I had put them in touch with the adaptive sports manager, so he's providing three volunteers to hike with the three kids with additional needs. she's gone off with her hiking poles for balance (which is, 8'm sure, going to cause trouble)

Blimey, my typing is all to pot today. Ds1 is starting his math grade skip today, as well. I had a message from learning support at his school, yesterday, as well. This would be the day that he wouldn't get out of bed, and eventually did twenty minutes before the bus went. He's on it, but I can't help but feel his preparations for life this morning weren't exactly up to par! He hasn't taken his meds, either, and ate about three mouthfuls of breakfast.

I think 'discombobulated' expresses my general state of being this morning! I have boot camp in 45 minutes, suppose I'd better get my act together!!

Ep has made recommendations in statement re social/communication - but nothing that's much different than is already happening.

Just went to check ds1 had his inhaler before cricket. His teacher approached me to tell me he hadn't done his feelings diary, but wanted to do it at home with me for this afternoon's section - fine. Then I asked if she'd seen his statement yes. Will there be a meeting to discuss and plan provision against targets? "Well there will be yes." Then I mentioned the two assessments SALT and handwriting that have been referred to be done in school and she went off on one about how unfair it is to take him out of class to do handwriting groups and how much he objects (seems he kicked off about it today) and how the statement says he should have 5 minutes a day of handwriting input and how are they supposed to facilitate that etc etc. Also said that the targets aren't possible and she doesn't like the statement, basically they can't meet the provision and the whole thing is ridiculous.

SENCO kept going back and forth and circling around us, then she went inside and two seconds later the Head came out all flustered and said to ds's teacher that she had an urgent phonecall! Talk about bloody blatant! I am absolutely steaming mad.

Just going to phone Parent Partnership and ask what they advise and if they will attend IEP/statement planning meeting with us.

Well, hopefully the HT was going to get a grip of the teacher and let her know it isn't a choice. Would love to have been a fly on the wall, though. Yet another thing that makes you want to take to the sofa with a blanket.

Right, am offski.

Sofa - check
Blanket - check

(Currently curled up nursing a humdinging headache.)

Had enough of the world today.

Spoke to PP though and they were very helpful. They're going to come to the meeting/s with me from now on.

Teacher told me ds had a letter in his bag, implying it was re the IEP/target setting meeting, but when we got home it was a flyer for the local ASD support group.

Hope dd got on ok on her hike and that ds's wobbly start to the day didn't adversely affect school.

Hi,

Having a mare of a day - again.

LEA have allowed school to change the wording in the statement AFTER we had signed to approve the Final Statement. I only realised when I went to call them this morning, because the wording is embedded within a couple of paragraphs that look the same at the beginning and end and I had no reason to suspect had been changed - having already approved and signed for the final version.

Their response to our complaint was - "tough".

Er, school aren't allowed to change a final statement.

That's just pissing about. Does it make an enormous difference? If it does, and you are unhappy, I would call IPSEA, and I would tell the LEA and the school that you are taking advice.

School changed the final statement. That just about takes the biscuit, really. You sound remarkably calm. I would have my SEnCOP in arm and be marching down there, livid.

You couldn't make it up, really.

I have emailed Parent Partnership and dh has contacted the local advocate we were going to use when we considered appealing last time. Advocate said it's absolutely unprecedented and something he's never come across before.

Statementing Officer was downright rude to me and I think it might be because it dawned on her that she might be in trouble.

The change in wording is designed to make it easier for the school to resource the provision - which of course is also illegal as any flexibility has to be for the benefit of the child and not the school. It really depends how the school use the wording as to how big a deal it is, but I am not going to give them the chance to manipulate things further to their advantage.

AppropriatelyEmployed has been giving me some good advice and case law quotes over on my thread about it.

School haven't responded to my letter requesting a meeting. PP told me to tell them they would be accompanying me in the letter, so I figure school is probably running around trying to cover their arses before giving me a date.

I'm not calm at all. I was shaking with anger when I got off the phone with the LEA and ended up with a raging headache as a result.

Since then I've found out we're not too late to go to appeal and that the advocate has enough space in his case-load to take us on (we're meeting with him one evening next week) so I feel a bit more like we can fight this.

Talk about a bad week all round. Think I might crawl back under that blanket now.

Oh, I'll have a look at your thread. AE makes me smile. She gives such great advice, but I remember trying to convince her that her ds really did have sn when she was in such denial and furious with the school for suggesting it. We all have such a journey to make... And she's a huge asset to the board.

Stay mad, and eat chocolate if you need to. I might be forced to go through with it on principle, just so that they know they can't piss anyone else about, even if it doesn't make that much difference.

Fuming on your behalf. Chocolate is the least you should be necking. Have you no alcohol in the house?!

Dh was saying the same as you earlier. That if we let them get away with this then they will just go on to do it to other unsuspecting parents.

Tribunal doesn't seem so scary with this advocate on board. He only lives a couple of streets away and has won against our LEA many, many times, not least of all extremely impressive provision for his own dc. He's also reasonable ££s wise and of course there wouldn't be any travel expenses for the tribunal, as they are all held in town, which is five minute bus ride from home.

Interestingly he is also on crutches with a bad foot at the moment - it must be a sign, surely!

I am a bit nervous about signing up for a big fight with dh starting this new job though, as it means I will have to do most of it myself.

We have no alcohol OR chocolate in the house! I shall be sending dh on a mercy mission once the dcs are in bed. It's looking like being pizza for tea as well, as far too sore and knackered to cook and we have gf pizza in the freezer.

This week has been a disaster food wise. I decided to have a couple of normal weeks before I decide whether to go back to alternate fasting or just go back to nailing down the kcals. Since then I've been taken out to lunch and dinner and eaten crap at home because dh was cooking and we had to have something quick thanks to all the evening appointments.

Nephew's birthday BBQ (ha - BBQ in this weather) on Sunday, so I'm not going to think about food, calories or health again until next week.