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concerns that dd has dyspraxia spoke to school who alongside senco r going to help saw dr today did some tests and showed her checklist they are not going to refer

29 replies

tinkbig · 27/05/2011 16:25

went to drs expected to be referred as we feel she has dyspraxia school are being very supportive said going through dr would be quicker they r not referring
will stick with school then

any thoughts please???!!!

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IndigoBell · 27/05/2011 16:29

Why did the GP not refer?

Ask to be referred to the child development paed because you and school are concerned your DD has dyspraxia.....

She also need to be seen by an OT......

It is quite hard to get a dx of dyspraxia. And once again brings you almost nothing. If she ticks all the boxes, then just assume she has it.

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tinkbig · 27/05/2011 16:32

i dont know why they didnt refer said that paed wouldnt do anything and they didnt want to label her

she also said that it was very hard to diagonisis

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IndigoBell · 27/05/2011 16:48

It's not the doctors choice whether to 'label' her or not - and is downright rude.

It's not hard to dx.

The paed won't do anything - besides dx her - which does help and refer her to an OT.

An OT will 'do something'.

Go back to the GP and make a fuss.

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Ineedalife · 27/05/2011 17:32

How old is your Dd tink, if she is at school there is quite a lot that can be done to support her, in terms of writing slopes and easy grip pencils but you will find it hard to access these without a Dx.

I agree with indigo that she needs to be referred to OT, they can give her exersizes to help her with co ordination and low muscle tone.

Go back to the GP and insist.

Good luckSmile.

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IndigoBell · 27/05/2011 17:34

You don't need a dx to get writing slopes, easy grip pencils, and dyspraxia interventions.

You just need a clued up SENCO.

So go and make an appt with the SENCO about what they are going to do to support her.....

Does she need help with her fine motors skills?
Does she need help with her gross motor skills?

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tinkbig · 27/05/2011 18:02

cheers

my dd is 5.8 years old
had a meeting with senco and her teacher yesterday
they r going to draw up a plan with dd for what areas need working on
they have been great

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Ineedalife · 27/05/2011 18:42

Great tink, I have had a bad experience with a school, Dd3 is not Dx'ed but has issues which could be dyspraxia.

She has recently moved to another school where she is going to get more support. At the old school she was not allowed to use her special pencil because everybody had to use the same Even though it was stated in the OT report that she needed to use one.Hmm.

You are lucky that the school your Dd is at are willing to offer support. I hope this is enough for your Dd and then she may not need a Dx but keep a close eye on her to make sure she is not struggling.

Good luck.Smile.

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justaboutWILLfinishherthesis · 27/05/2011 19:30

This reply has been deleted

Message withdrawn at poster's request.

tinkbig · 27/05/2011 20:41

thanku for all of your support
the dr really annoyed me gggrrrr

have made another appmnt with another dr dh going this time

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moosemama · 27/05/2011 21:07

Well done for sticking with it Tink.

I can't believe he made that comment about labelling to you. That is so out of order.

We often say on her that a diagnosis is not a label, its a signpost to the support a child needs to overcome their difficulties.

She may not get a diagnosis - ds1 was assessed as sitting exactly on the cut off point for not getting any help Hmm - but the report they produced has been invaluable in getting the school to understand exactly what support he does need and why he has difficulties with certain activities.

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lisad123 · 27/05/2011 21:51

Ask school nurse to refer

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feynman · 28/05/2011 00:49

What do you do when a paed refers you to ot as they 'suspect' we suspect and school suspects that your child is dyspraxic, and the OT's wont see him as they are not able to offer a service to dyspraxic children so wont even see him for an assessment!

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Ben10isthespawnofthedevil · 28/05/2011 06:26

We went for a private assessment Fenyman. The NHS did see him but said that they didn't want to give a label and on their scores he was fine. £430 and a complete assessment, his sensory, balance, motor skills problems were very very clear and we have an 18 page report to back it up. We have started Sensory Integration Therapy (that I applied for a grant for) once a week for 4 months. Can see changes already after 2 sessions - he managed to hop 4 hops down the road yesterday - he couldn't do even one without falling over before!!

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IndigoBell · 28/05/2011 07:05

Feynmam - you get almost no treatment for dyspraxia in the NHS.

So assume you have a dx and now work out what you're going to do.

Ask the SENCO what schools going to do to help.

Read up on it.

If you can afford it get some private OT, else there are plenty of books giving you suggestions for what you should do at home.

There is loads and loads you can do to improve dyspraxia.

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moosemama · 28/05/2011 12:08

Thanks interesting Ben10. Our NHS did assess - after almost a year on the waiting list. They do a point scoring system and ds was assessed on exactly the cut off point - which I then discovered is two point lower than everywhere else's. Hmm

They noted problems with, visual motor skills (no depth judgement, very poor tracking, poor hand eye co-ordination), left/ride side, particularly low core and upper body strength, fine motor skills and general very low hypotonia, plus a host of sensory problems, yet he still wasnt bad enough to qualify for any help.

We just don't have the money for a private assessment though, so are concentrating on his visual stuff, as this is having more of an effect on his academic learning and self esteem in the classroom that the other things at present. I suppose as he gets older he may become self conscious about the hypotonia and poor core and upper body strength though, so we will have to address it at some point. We do as much at home as we can, wobble boards, poi (that one went down like a lead balloon), handwriting/fine motor practice, theraputty etc, but we really need professional input to address it properly.

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Ben10isthespawnofthedevil · 28/05/2011 17:26

Moose

I definitely don't have the money to pay for a private assessment. Our assessment (£430) and therapy (£975) has been paid for by a benevolent fund grant. Does your DH work in an industry who have a benevolent fund?

Our private assessment picked up all of the issues that your NHS one did plus more and I am so pleased that I didn't listen to the NHS :)

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moosemama · 28/05/2011 17:38

Actually thining about it he does, Ben10, but he's reluctant to apply to it. We have discussed it a few times.

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Ben10isthespawnofthedevil · 28/05/2011 17:45

It was really really easy to apply. My employer was not involved at all. There was 1 form to complete and I have a dedicated contact at our charity - the banking one.

Maybe DH can think of it as his industry wanting to help those children who need assistance to acknowledge the time that he has put in with them.

I commented to my mum that it was a very strange feeling when they agreed to pay so much for the therapy as it was as if someone else was agreeing that he did have real problems.

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tinkbig · 09/06/2011 13:06

wish us luck have 2nd drs appmnt this eve is @ 7pm with a different dr
dh taking her

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telsa · 09/06/2011 15:14

Please keep us updated. My daughter, just a couple of months older, also shows many signs of dyspraxia and the school has sat on this for nearly a year and all we have had is a phone call from an OT last week, saying sorry, but the waiting list for assessment is really long and they may send us some games through the post. I'd like to know what the alternative steps are to getting her some help, if it is deemed necessary. Let us know what the doctor did at the appointment?

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nicevideoshameaboutthesong · 09/06/2011 16:35

fingers crossed for you.

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tinkbig · 09/06/2011 19:21

well gp went great Grin

she is being refered

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beautifulgirls · 09/06/2011 20:08

well done Smile You now upgrade to a gold persistance hat!

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feynman · 09/06/2011 23:02

Is it a standard assessment for dsypraxia (people have mentioned ticking boxes?) if so does anyone know what its called?

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Ben10isthespawnofthedevil · 10/06/2011 07:05

Movement Assessment Battery for Children will normally be carried out and if your child scores under 15th percentile then they will normally be given a dx. We also had a test for visual motor integration (eye hand coordination). However DS scored on 25th percentile on the day of his NHS assessment for the Movement ABC so not given DX.

Private OT didn't use the Movement ABC as it had just been done and apparently this can skew the results as they know what to do but did lots more tests including sensory profile, redid the visual motor integration test in much more depth, the Gardner test of visual perceptual skills, informal handwriting test and clinical observations.

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