I am wondering if it's always worth getting a diagnosis/label

[LumieresForMe]

2 things really made me think.
I very likely have ME, have had for years and regularly struggle with it. But I have never needed a diagnosis on the ground that apart from, learn to manage your energy, there isn't a lot a GP can do.
Dc2 has just had an assessment for AS and after two years of hoping for a diagnosis, he came out 'absolutely fine' even though he still has meltdowns etc etc.
in my case, I've never thought a diagnosis or label would help me in anyway. I'm self employed, my work is scheduled around my own abilities. DH knows I can't do as much as I would like.
In dc2 case, I would have loved a diagnosis as an acknowledgement that dc2 does indeed struggle even though it probably doesn't appear that way from the outside/at school. And the label would have been a way in to explain to him how his thinking is different.
Not having this long awaited diagnosis made think though. Does he really need a label? Do I? What are the benefits of having a diagnosis when you know you aren't going to get any help (which the case both for myself and for dc2)? What could be the benefits of NOT getting a diagnosis?
Just trying to get on head right there, wondering if it's worth fighting for another diagnosis, with all the issues/efforts it involves or if things would be better left alone.

And how do you fight the consultant when he openly says he knows nothing about POTS or Dysautonomia and is a Cardio so doesn't know Hypermobility either (Hypermobility AND POTS both have severe fatigue involved) but won't refer you onto the consultant who specialises in it. It was purely a means to dismiss me. I argued, I lost, and did not want to get 'difficult patient' on my notes. Currently the meds I'm on control it, so I'm 'discharged' to the care of my GP, who panics and sends me to A&E if anything happens as he knows nothing about POTS either.

POTS is absolutely measurable. Hypermobility is also measurable via a standardised assessment, I'm shocked it's been discounted for you. I suspect Ehlers Danlos may account for both, but no one's ever tested for that.

A consultant who about 25 years ago, shouted down a corridor 'of course you have pain you have sciatica' - that was the entire meeting. I had been in hospital being prodded and poke by a handful of housemen for about 4 hours, 2 of whom were genuinely interested in a couple of my symptoms.

Over the years I have tried again, but he has been the incumbent and refuses to reassess me - well he did once, but repeated his initial assessment. To be honest I am have not pushed too hard, I have always had this level of pain and the tiredness has been there for decades too, so have never really bothered. But I heard he retired last year.... so, now I am also going back to a more open minded GP, I thought I'd give it a go again. See if hypermobility is a cause or symptom for me and take it from there.

I shall bookmark UCLH though, thanks

You either get yourself off to UCLH hypermobility clinic on the NHS or pay to see Dr Kaz Kaz or Professor Grahame at the Hypermobiilty unit at St John & St Elizabeth.

If you have children, it is very difficult via the NHS so best to go to the Hypermobility unit, then you have to nearly have a heart attack to get the NHS to follow the recommendations for tests in the private report.

Are you not allowed to get a second opinion from a consultant of your choosing with the new NHS system?
Just wondering if it would help.

look there it tells you about NHS system

Possibly. As I said, I have let it slide for a long time. But I have recently lost a lot of weight and am starting to feel restricted by it all. So thought I'd take advantage of new GP and enquire again!

I shall take all info with me TiredC, thanks.

rumble again a very good point that a label can have too much stigma attached to it and actually stop you from accessing some services.

I have to say, some days, i just long for the recognition that a label would give. To just say 'No it's not all in my head. I AM ill. And dc2 a DOES have some issues'

My heart broke today (again). Dc2 is trying (again) to go to someone house bthr child looked at him and told him 'that's funny it's the first I've heard you speak'
But he has no communication issues :(:(

Sorry rant over

www.ehlers-danlos.org/online-shop/events/eds-uk-s-residential-conference-2014-detail

They are talking about Autisim, hypermobility, Pots and all sorts, this is coming up in a few months for anyone interested.

EDS is funny though. I have type 2 and have been told over and over again that "all treatment is palliative". The NHS does nothing, except prescribe me more painkillers. I don't even have a consultant which seems crazy for someone with as many problems as me. The only plus point it seems is that it placates the DWP :(

DBiL sought and received his diagnosis of Aspergers in his mid 40s. In one way it didn't change his life at all - he had already retired after a highly successful career in IT. But it helped him (he says) because he had always known he was different and it explained why and that je was not alone.

I think it also helped his family understand his incredible stress about seemingly trivial stuff, like last minute changes to plans.

Hello :)

I'm sorry to hear you think you might have M.E. I've had it for 13 years, so if you would like to pm me about anything, feel free.
I think a diagnosis can be hard to achieve, and it can sometimes be worth it. A lot of the time, medical professionals don't 'believe' in it, and just tell you to exercise more. So bear in mind if you do get a diagnosis, you still may not have understanding from some people.

Having a diagnosis can be a huge sense of relief though, it was for my dp. It can also help if you ever do have a bad spell and need time off work, it's a long term condition causing the absence so the sickness procedures change. For example, at my job if you have 3 sicknesses in a year you get a disciplinary. However, if that was due to my long term condition, that changes things, as they were aware of it when they hired me.

There are pros to being formally diagnosed, but I wouldn't say there was earth shattering benefits, or additional treatment - because as I'm sure you're aware, other than graded exercise, there's no 'proven' successful treatment.

Oops, posted too soon!

With regards to your dc2, a formal diagnosis may offer increased support and understanding in school? I work a lot with children with SEN and if we know their specific problems and needs, we are more able to target them with the appropriate help, and overall just understand them better. Also, like you said, it's a way for your dc to be able to understand his behaviour.

My friend recently got diagnosed with AS at 23, and although no help is available for him, it was life changing as he was able to understand his own behaviour, and some of his frustration melted away.

I hope whatever path you decide to chose, that you get a happy outcome from it :)

And in the end, you very quickly work out what works within your class dynamic through trial and error!

It is teachers with this attitude who have done irreparable damage to my DDs and the reason why we are about to lay out several thousand pounds to take the LA to court to fund a place in an independent school for my DD2.

I have moved heaven and earth to ensure that her dx paperwork and her statement describe her and her needs sufficiently well that teachers could ensure her well being in their classroom but there are always a few who think they know better than the parents and the HCPs and will respond only to what they see before their own eyes.

Every trial and every error makes it harder for my child to get the education to which she is entitled.

You know how you think you can spot 'those' parents? Well, parents can spot 'those' teachers

Absolutely.

Luggagecarousel You haven't got a clue. You really should leave teaching.

Trial and error should always be a last resort. you cannot educate children who have significant educational needs via guesswork.

god reading luggage's posts has thoroughly depressed me, it is scary enough when your child is just starting school when they are disabled, without reading stuff like that.

We our DS, I knew at 1 year he had major problems; I fought for a statement and we have been very luvky that he has attended a brilliant special school since he was 4. When he got to 13, we did become concerned that given that his school meet his neds so well we had never pushed for a diagnosis. Given that if anything happened to DH and I social services would just class hims as a 'vulnerable adult' we have pushed for a label.

when he turned 13 I spoke to my GP for a referral, 6 months later we had our first appointment with CAHMS.. he turned 15 last month and we are going to finally to through his report in august

I didn't think a label was important, but his welfare in the future depends on it

Were just going through the assessment process for ds1, its very likely he had HFA. I thank my luck stars his reception teachers are not only on the ball but with their support he is doing very well in school. If we ever encountered a teacher like Luggage I wouldn't hesitate to remove him and HE.

Oh dear luggage, I am glad tge teachers at dd Autistic school love what they do and it shows. she is excelling at her school, and her behaviour has really improved. I am there may be teachers like luggage at specialist schools. Those children who are at specialist schools are there because they have a statement of special educational need I.e those with moderate to severe SN be it ASD, learning disability etc. those schools are very hard to get into and each case is reviewed before an LEA panel, not tge parent pushing and making up labels . I would love dd to go to the mainstream school with all her nt peers and be doing the stuff they are doing, but she is in her specialist school for a reason!

I think I was 'one of those parents'

I took the time to meet with the school before DS started school and shared the relevant information. Complex background but no formal diagnosis.
They didn't even bother to pass the information on to his new teacher.
He spent two years at MS and didn't learn to read or write or what the days of the week were.
They didn't manage his severe eczema.

They didn't initiate a statement.

They treated me like a bloody fool even though I was polite, trusting and open.

So I initiated the statement myself and pushed for assessment.

That little boy who 'was fine, just a bit quite and will catch up' has ASD, moderate to severe LDs, severe auditory processing disorder and attachment difficulties.

He now attends a special school.

But hey what would I know? I am not a teacher.

I work with schools a lot in my job and I am very much afraid I am often horrified by their attitude to parents of children with SN/SEN. I frequently leave meetings wanting to bang my head against the nearest wall.

Short version. Yes labels, or to use the correct term, diagnosis, are not only helpful but vital.

Not sure how much help we would get for OH if his Multiple Sclerosis continued to be put down to over work and stress

And still, absolutely no one has any suggestion about what they would like me to do differently......

And those who think other teachers are doing it differently are deluding themselves.

And those who interpret anything I have said as not doing my best for my pupils belong very firmly in the "enjoy getting defensive/abusive" file.

there is absolutely nothing to get abusive about. I have totally dedicated my life to my students.

I am simply describing reality to you. If you don't like it, tough, we don't like it either,

but....

back to the start of my post, I have yet to see anyone suggest how anything can be done differently!

Well,tge teachers at dd school are fantastic, and it is showing through dd. When you go to that school, it us such a positive and happy place, tge teachers there seem to enjoy their job and are so dedIcated, You have to be to work with chikdren who have SN.

I have a large caseload.
All of the children have complex needs and some have incredibly complex social backgrounds.

Incredibly I find time to go through all of the available information and contact relevant professionals before I visit and regularly throughout their time with me.

I wouldn't be able to do my job properly if I didn't.

How could plan without knowing their needs? How would it work if I didn't know what their parents thought and wanted?

Why would I want to make my life harder by not doing that stuff? ?

I have yet to see anyone suggest how anything can be done differently!

If you don't want to wade through the paperwork, arrange meetings with the parents and get the information you need from the horse's mouth. Summarise the most important points and keep a summary sheet for each child to hand while doing your planning.

One way or another, you will be doing many of these children a disservice by disregarding the information that has been gathered about them and using your own limited experience to make a rudimentary assessment of their needs based on trial and error.