There must be a way out of this mess but at the moment I can't see it.

[NoHaudinMaWheest]

Dd has had mobility problems for about a year now. She has been thoroughly investigated and no physical cause found. Largely because nothing physical can be identified rather than because there are any obvious factors it is considered a psychosomatic condition and she has at last be referred to a psychotherapist at CAMHS. Even if this does help it will be a long process.

She uses a self-propelled wheelchair and as her school has a support base for physically disabled students, the whole school is very accessible so she has managed independently.

Since last week the problems have spread to her hands and arms. She is unable to move her right arm at all and has limited use of her left hand. Her legs are also worse so she now cannot stand even on crutches and her bum shuffling which she uses to get around at home is much more difficult.

She requires help with washing dressing and eating and is unable to write. She also can't get into her bed and is sleeping on the sofa.

The biggest immediate problem is that she can't self-propel and so can't go to school as she can't get around. School say they have no staff to push her. LA says it is not their problem as she doesn't have a statement. IPSEA say it is very much their problem and that there are emergency provisions which allow support to be put in place while waiting for a statement.

Quite apart from not wanting to go through the whole statementing thing again, I am wondering how long emergency provision will take. She isn't ill and desperately wants to be back in school.

As I have health problems myself and a Ds with considerable support needs, I am wondering how much longer I can keep going with the amount of physical help I am giving her but don't know if any help with that will be forthcoming.

I have been contacting every professional she is or has been involved with and other agencies but they always say they will get back but never do. I am currently waiting for 10 different people to contact me. (OK a couple are for ds.)

Any experience or advice welcome as are honks and hand holding.

Is there a reason you haven't taken her to A&E? Is it because you fear that they will think you are medicalising a 'psychological' problem?

I wonder if taking her back to A&E would do two things - 1. have a fresh pair of eyes and 2. Make the paediatric department account for their diagnostic findings.

"We haven't identified the problem" does not equal "it's psychological". If someone had a massive outbreak of hives and was having difficulty breathing, they wouldn't care why until they'd got the problem under control. If it then turned out to be a stress reaction, they'd put in treatment to prevent it happening again. Right now, your DD's condition isn't even under control, let alone properly managed.

I was just coming back to ask if A&E might be an idea. Was having a discussion today with someone about how ridiculous it is that the only way to get your dc assessed for severe anxiety is to take them to A&E, as CAMHS say either no, because it's school related - or - no because it's ASD related so you are left in yet another provision black hole.

That made me think that surely if they can do a psych eval on that basis, if your dd is having creeping loss of motor control and has suddenly lost the use of her arm/hand even if they don't think it's physical, by taking her to A&E you might trigger and full psych assessment. It would be quicker than waiting for them to get back to you, then book appointments etc and and if it proves it's not psychological should lead to a more urgent full medical investigation. It is an urgent situation, psych or physical is irrelevant really, they need to act now.

Thanks for everyone's input. Must go and sort dcs out now but will reply later.

Lougle is entirely right and the hives analogy is perfect. My DS had an anaphylactic shock reaction after many smaller relations so has an epipen. No evidence of raised IgE or allergens was ever identified. He's had his epipen for 3 years now. We are just beginning to consider sensory link and stress reactions (including evidence children with retained mono reflex suffer unexplained allergies and it appears DS has retained these.

You cannot (well the consultants) ignore physical symptoms because they cannot find the cause.

zzzzz Her week in hospital last year came up with a medically unexplained diagnosis and a referral to the psychologist for assessment. Psychologist was good and came up with a few things that might be causing the symptoms but nothing obvious. She referred her for a psychiatric screening mainly to rule out ASD which it did. I sure this is correct dd really doesn't present as on the spectrum.

Psychologist then decided that psychotherapy was the best option and we have been waiting since October for a CAMHS worker to be allocated. This was done only two weeks ago. If psychotherapy is the right option it will take at least a year to make a difference.

I can't identify any reasons why dd should have got worse now and neither can she. She is really quite insightful.

I think an A&E trip would only result in us being referred back to the team already in place.

I expect ICS to take ages to put anything in place. However I am now in possession of their criteria for assessment and intervention. Quite coincidentally as I had asked for a copy as part of my complaint about ds's case. I think it will prove very useful.

I'd still worry about severe, new symptoms which affect new limbs -it's a significant development.

Yes it is worrying which is why I am going to push to be reviewed by a neurologist we know.

Yes zzzzz I was think that you might benefit from a look at that document.

You could always be very upfront with A&E, "We don't want to medicalise this if it's the same thing as before, but could you just check her over to make sure we're not neglecting something new?"

That sounds like a brilliant approach, Maria.

TBH I'm a bit of a coward around doctors so I would rather go with the people we already know.

I have a lot of history with unexplained symptoms in myself and the thought of sitting in A&E is terrifying.

GP will phone me after morning surgery. I am sure he will he has never failed yet.

No news on school front. I'll give PP woman another day - she said it might take this long. I will phone school today to get work for her.

Ds was really upset about his sister's situation last night. It is unusual for him to explain what's worrying him so it must be really bad. And I couldn't give him much reassurance. He is very good at spotting flannel.

Well the thing is, NoHaudin, that we can all be armchair advisors, safely from our computers, but the reality is different. You have to make the decisions and as long as she gets what she needs, it doesn't matter how she gets it.

I hope the GP is helpful - they can be huge advocates if they're so minded.

GP wants to see her himself before considering re-referral. I have made first appointment I could get next Wed.
Physio has spoken to him. She is the only prof who has actually seen dd since the deterioration. She feels it definitely fits the same pattern as her legs which made GP reluctant to refer. However GP was understanding that I didn't want to miss anything.

IPSEA have phoned back. I need to apply for SA then ask school to apply to LA for emergency funding while assessment in progress.
SA application done. Just off to write to school. I hope PP person can get something in place for the immediate term as even emergency funding will take a while I expect.

Why why why does everything take soooo long?

Oh well done!

NoHaudin you are awesome.

Keeping everything crossed for them getting their backsides into gear and getting emergency funding in place asap while the SA process gets pushed through.

nahaudin, haven't logged on for a couple of days, so sorry to hear about dd, couldn't give any better advice than the wise words from all the wise women above, but just hang in there, (will pm you)

Phone call from SENCO this morning. She will try for emergency funding but wasn't hopeful as couldn't get it last time she asked. The thing is the school is actually good with SEN. They were brilliant with ds and have been good with dd up until now. Mind you they haven't had to spend any money on her and ds came with full hours statement already in place.

She also raised the issue of EHCP. I understood that they weren't enforceable until Sept even though we are a pathfinder authority. Can someone tell me if that's right?

I asked for work for dd to do. No problem she would pass it person in charge of that area who would call to let me know when to pick it up.
I'm afraid that was the last straw. School is 45 mins away by bus. I can't drive, neither does dh (both for disability reasons). I am caring for dd, caring for ds, endlessly pursuing professionals, managing the house and trying to make sure my health doesn't deteriorate. I don't want to be running around collecting work. AIBU

Couldn't a friend of DD's bring it home for you?

For goodness sake! I agree with it being emailed and answers typed and emailed back. It's not likely to be helpful for your dd to have to handwrite answers at the moment anyway.

The person in school who actually organizes the work is obviously more sensible and phoned to say she was emailing it.

Should have asked myself - I'm just getting flaky now.

Well there is my professionals' etc diet thread.

More school etc shenanigans. I'm waiting for a call back and will then update.

No you don't have to collect the work. Haven't they heard of email. Ask the LA to put in place home tuition too. That way they might decide the emergency funding would be cheaper.

Email from PP person says
Our LA no longer does emergency funding. No idea if this is true/legal.
Dd won't qualify for statement. We will see.
We can hire an powered chair which can be kept at school. Using a powered chair is against all medical advice.

To get her back to school other students can be used to push her about. No comment.

Physio was going to ring SENCO to say again that medical advice is that she doesn't use a powered chair.

Basically school are saying we as parents have to provide and pay for something we have been advised not to do so that school doesn't have to take any responsibility for one of their students.