Has anyone had any experience of a neurologist diagnosing / treating dsypraxia

[Saker]

Ds2 has a lot of dyspraxic traits, huge problems with motor skills and co-ordination and motor planning. (He also has speech and language and communication difficulties possibly autistic although no diagnosis and not typical if he is). It is amazing to me that no-one seems prepared to diagnose dyspraxia. Anyway I am thinking of pushing for a diagnosis as his teacher thinks it might help us to get a statement which he needs to go to special school from the unit that he is in. I am seeing his consultant soon and wondered about asking for referral to a neurologist - I have even wondered if his problems are something more than dyspraxia as I am often hearing of kids with lesser difficulties who have a diagnosis of dyspraxia and I wondered if a neurologist could help sort that out. Has anyone any experience of this or any advice - I am really struggling to know what to do about Ds2's motor difficulties, school seem to find them unbelievably bad yet we have seen a succession of OTs who do nothing really except offer vague advice about getting him to cross the midline etc etc

I would ask for a full assessment at your cdc centre Saker.
If your ds2 has lots of different traits and is quite complex (as my dd is) then I think that may be the way forward.
Quite often things like dyspraxia and asd go hand in hand. Dd has been diagnosed with mild dypraxic traits which are part of her asd apparently!
So if they haven't given you a dx how did he get into current placement?

Thank you for your advice. He got his current placement just on the basis of his needs - it is an assessment unit where they are supposed to decide the best type of education for him. He was turned down for a statement which is ludicrous, but hopefully with the weight of the unit behind us we should get at least considered this time.

He has been assessed by OT, PT, SALT, clinical pyschologist, but the paed is a community paed and doesn't actually seem to do any assessment himself. When I have asked about diagnosis in the past they just umm and ahh and say he may grow out of it. He's five and he can't take off his shoes - he will not grow out of it without a miracle taking place. OTs don't seem to do much but at least now the school have realised the extent of his problems and are pushing the OT a bit more. Tbh I think the reason they won't diagnose is because to get a diagnosis of dyspraxia your motor skills are supposed to be way behind the other skills and because his speech and language is also delayed they can't say for sure it isn't global delay or just autism. But his language is so much ahead of his motor skills and his speech problems are because of his motor skills so I think it really is time he was diagnosed. Sorry I am rambling here but the point is he has been assessed but the paed isn't really prepared to take responsibility for any diagnosis. Usually the clinical pyschologist will, but she can't diagnose dsypraxia. That was why I was thinking about a neurologist. I feel awkward asking for a referral to a developmental paed because I don't really understand what the status of our current paed is and whether we are entitled to that.

I would ask for a full assessment Saker. You need to know and I would hate for you to be dragged through the system like we were.
Sometimes a child needs to unravel before they fully know exactly what needs are going on.
Have to say though we have lots of children with Dyspraxia in dd's unit and they all got pretty quick early diagnosis.
Good luck with whatever you decide to do.

Where we live you can't get a diagnosis until child is 7 (ped just won't do it). I know a lady whose DD has probable dyspraxia and they're doing lots of physio; the girl will be 7 in a 6 weeks or so when things will get more definite, at least on paper.

He has had a full assessment really, that's the thing. I mean he has been assessed by everyone under the sun including physio and three different OTs, clinical pyschologist, ed pyschologist, opthalmologist, audiologist and we have had two meetings to discuss him at various points but not everyone turns up and no-one ever reaches any conclusions. When I raise the question of diagnosis everyone mutters about not ticking all the boxes and grey areas etc etc. I had got used to not having a diagnosis and I still would be if his needs are being met -(I am satisfied with his SALT provision at the moment) - but his motor skills issues are just not being addressed. I guess the way forward is to put this all to the paed and try and get some decisions as to what's possible. I know no-one here can give the answers, I am just confused really what I am even trying to achieve at the moment. He is making really good progress with RDI at home, but it seems at school he can't even manage simple things presumably because he is just overloaded with processing everything going on but they don't really seem to have a good understanding of this or of sensory-motor problems in general.

Sounds more like paediatrician with an interest in child development than neurology. Although there are others on here who know more about it suggesting cdc which sounds like a better place to start. What/where does GP suggest?

How old is ds saker?

google executive function problems (can look like dyspraxia, can overlap with dyspraxia). If you CAT me I can send you some stuff from last weeks course that might be interesting to you.

My gut feeling based on knowing lots of neurologists is that you might well be better off with a developmental paed. I think neurologists often tend to specialise in things about which a lot is known. Sorry, I'm not phrasing this well but it seems to me that biologically dyspraxia is something of a black box, and a neurologist might be able to rule out other underlying conditions but not much more. I may be wrong though.

He is 5 BH. He has already been through the system, CDC etc you know, it's just I don't feel we are addressing his motor problems at all and they are not improving by themselves.

Thanks Jimjams I will CAT you later - any info would be useful. I would like to ask to see a developmental paed but I am not quite sure exactly what our paed is and his qualifications and don't want to put my foot in it.

Haven't you seen a dev. paed yet?

We have just seen the community paed, but he is part of the CDC team and I don't exactly know whether he qualifies as a developmental paed or not. But he doesn't appear to do assessments - he sees his job as to gather all the other professionals and take their advice. In terms of diagnosing ASD, the clinical pyschologist at the CDC does all the diagnosis in our area. She has seen Ds2 a few times and seems to vary in her opinion as to whether he is autistic but is not sure enough to give a diagnosis. Tbh I don't really mind about having or not having an autism diagnosis, because I am happy with the progress we are making with RDI and he is getting pretty good SALT at school at the moment. But although he has been seen by three separate OTs none of them really seem to actually do anything apart from note that he is very delayed with his motor skills and offer me leaflets and advice. The teachers at his school are now pressing for a 10min daily programme from the OT but I am not sure how much use this will be especially as they may not always have the staff to implement it. The other thing that is striking me is that he seems worse than a lot of other children with a diagnosis of dyspraxia and portage worker, music therapist, SALT, teachers etc who have worked with him don't seem to have come across a child like him with that degree of motor planning and co-ordination difficulties. So it did even occur to me if there was something else wrong with him other than dyspraxia although I don't really know of any other neurological diagnoses that would describe him (which is why I wondered about a neurologist also). So I am thinking that when I next see the paed I need to push to have his motor skills addressed and maybe a diagnosis would help get provision in this area and a statement also. I feel a bit awkward asking to see a developmental paed because it's effectively saying I don't trust our paed. Does that make sense? Sorry if I haven't been very clear, he is already well in the system and has been seen and assessed by many people at different times which is partly why I am a bit puzzled as what to do about his motor skills because the people who should have helped me (ie physio and OT) are not doing so.

I am shocked you haven't tbh Saker. We have been seen at first every 6 months from the age of 2. Now he comes in annually to review all of the language unit children.
Although tbh he categorically stated that dd did not have an asd (and stated this on her statement).
We ended up seeing an expert in the field who specialised in complex cases like dd's. Infact I was shocked as she said dd had some mild dyspraxic "features" that were all connected to her asd and I didn't even notice tbh.
It is so frustrating though as all that really matters is that your ds's needs are met and obviously they aren't meeting his motor difficulties.

Is he able to do things like jump. pedal, walk up stairs, but not longer sequences of movements (especially if the movement he is being asked to do is new) ? If so sounds very like ds1, and may be more down to poor executive function rather than dyspraxia, or rather than dyspraxia alone.

Didn't realise you hadn't seen a developmental paed. Essential I think, community paeds are often useless. Especially in complex cases.

Getting a label for your son is actually quite important, since if you feel he needs extra help at school it can be used to support an educational statement of special needs. That carries funding from the LEA, which he takes with him for the rest of his school years. Sorry if you know this already - I didn't when our son was diagnosed first with ADHD/Dyspraxia age 6, then ASD and developmental co-ordination disorder aged 8 -9. We've found that giving the school, and ourselves, an understanding of what he finds difficult and realistic expectations is much more useful than the actual direct benefit of OT/neuro/paed. input. His self-esteem is dependent on that and schools are tough places for some kids. But getting lots of reports and a diagnosis is powerful ammunition when you want extra help for him so explore all avenues available!

Jimjams, no he is 5 and he can't jump, pedal (he needs his feet strapping to the pedals to even keep them on); generally his gross motor skills are a bit better than his fine though, he can climb up a slide just about, go up and downstairs etc. He can barely scribble with a pencil although he can do odd things that he is very motivated to do and has practiced like put pegs in a board or fairly simple jigsaws. It is interesting what you say about your Ds1 - I know he has a diagnosis of dyspraxia and then I have been suprised to hear about him scaling fences, climbing out of windows etc! Ds2 could never attempt that (one small advantage to his poor motor skills ).

To be fair to the community paed he does leave diagnosis to the pyschologist, but sometimes you wish he would take a bit of initiative himself and take charge of the whole thing - bit of leadership IYKWIM. I mean, I can convince him of a diagnosis for Ds2 in 20min .

Helmum, he is in a SN unit and they are pretty aware of his problems - it's partly because of their concerns of how bad his motor skills are at school (which seems a lot worse than at home) that I am worrying about it more at the moment. They will apply for the statement and he may move to a full special school where he would be able to access on site OT and PT which might be better. But I think they hope a diagnosis would help with getting a statement also.

I am just a bit confused about what I should be doing about all this; I am prepared to push for help but I need to get it clear in my head what I actually want.

I think you'll find the stuff I have to email you interesting reading.

He couldn't do a lot of that stuff until recently (climbing started a year or so ago). Still have very poor fine motor skills. He still scribbles for example. He always found things like lying down from standing up really hard. It's only this week that he;s learned to make a thumbs up sign for example. Some of that will be down too such poor imitation skills so it gets hard to separate it all out.

I think OT can be useful- but only if they're used to complex children.

Thanks it sounds like the stuff will be interesting - I have just CAT you now.

Ds2 has poor imitation skills but like you say it's very hard to tell what comes first - has his poor ability to imitate inhibited his motor skills or has his poor motor planning and co-ordination made it difficult for him to imitate? I'm sure that sensory and processing issues play a big part especially at school in the classroom. It's interesting what you say about getting off the floor - Ds2 spends some time lying on the floor / bed / sofa and I think he has to be pretty motivated to do something to actually produce the energy burst to get up to do it. However if I go over and pull him up then he's fine and he's off to do it. It reminds me of those old chemisty reaction drawings where you need a certain amount of energy to kickstart the thing (which is where a catalyst comes in handy - ie me!) and then it goes along quite efficiently once it has got going.

Saker

I would seriously consider applying for the statement yourself. You know it has been done then (some schools do sit on such requests for months) and just as importantly you as the parent can appeal the decision if the LEA say no. If your son was to move to another special school you will in all likelihood need a statement anyway (the school in question would be named on this document).

Attila - thanks for the advice. In this case Ds2 is in an assessment unit - part of the aim is to determine what sort of education will suit him best and it will be following their advice (and their feeling that they are unable to support his needs) that we would try to get a place at the special school. We would need a statement for that but they would be motivated to do it if they are not coping with him, and it is also something they do this fairly regularly as at least half their pupils move onto to special school. A classmate of Ds2's has just got his statement via the school so I am pretty confident that they will act and they do carry some weight because they have been assessing his educational needs.

That needing a push to move can be executive function problems. DS1 can be like that- and Lucy Blackman writes about it in her book (she would get stuck on the pavement unable to step off).

I will look into the executive function thing some more - knowing Ds2 it is probably a mixture - like everything else about him!