Advice needed about Pro- Efa for verbal dyspraxia

[woodentop]

I've read a lot about parents giving children Pro-Efa for all types of behavioural problems and communication problems, all of which sounds fantastic and seems to have really made a difference to them. I would love to try this for my dd 2.10 months who is dyspraxic and would love to hear from anyone who has tried it and feels that it made a difference to their child. Are there any side effects? Can you only buy it on the internet? How long will they have to take it for?
Can anyone tell me whether Disability Living Allowance (UK) is payable for children with severe verbal dyspraxia?
Are there any mums with dyspraxic kids in the Leeds (England) area who could put me in touch with any local groups about dyspraxia?
Can anyone recommend any Makaton videos for parents? I have bought the Makaton Nursery Rhymes with Dave Benson and WOW!! what a difference that made. Within 2 days my dd actually communicated with me for the first time by signing to me. I was in tears.
Sorry folks for all these questions but I feel I am going in circles about info and SALT is too laid back, not to mention too slow. Don't have the finances to go private. So any help or suggestions would be appreciated.

Hi- I ordered proEFA from the US site- apraxia-kids?? I think- twice now- it took about 5 days to arrive and was 50 dollars for 6 months supply, which I reckoned didn't compare too unfavourabley wth UK prices for similar products. I think they sell it in the UK under a different name- the manufacturers are Nordic Naturals. I have a feeling nutricentre do it, but they completely do my head in and I actualy found it easier to order from the US. I like the pro-EFA capsules as well as you can cut them open really easily and add them to toast and honey.

Nancy kaufam (big in apraxia kids- and very nice- I contacted her for advice) is doing a talk in the UK soon- see the SN section for details.

I reckon you would get some DLA for verbal dyspraxia - depending on the severity. Certainly you would if you have to act as interpretor for you son. Get help filling the form in though.

A good charity to try for help with speech problems is AFAISIC My local group are pretty good.

I only know of the Makaton Dave videos. BBC 2 did a MAkaton series in the autumn but I missed it.

Anyway bed time for me, but can post more tomorrow.

One more thought about DLA. Because a "normal" child of 2.10 needs a lot of translating etc as well you may not get DLA yet. It depends on how much extra work you have to put in compared to narmality iyswim. I do think it would be worth enquiring about (although not from the DLA "helpline"- you need someone independent. AFAISIC may be able to help there.

Thanks Jimjams, I am looking into the DLA and like you say, may have to apply a little later if speech is still not established. You have to prove things like how your child compares and needs more help than a "normal" child of the same age. Will look into pro-efa now I know it is available over here, or something similar.Cheers

Don't even talk to me about DLA forms (I have to renew ds1's - keep being sent reminders. It is in the kitchen making me feel ill every time I look at it).

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There is a policy review going on for what services should be provided for kids with verbal dyspraxia. As a mother of a child with verbal dyspraxia I was shocked by how little of the right therapy was available compared with what it is that these children need to progress. If you are interested in being involved John Levy's contact details and the details of the meeting are below.

Advance notice for 24 November 1400 to 1700 hours in London

Pencil it in your diary and confirm to the e-mail below.

Are you able to influence the direction of potential service delivery and commissioning for DVD?

The London Specialised Commissioning Group has been involved in developing the Pathfinder Pilot around services for children with DVD (Developmental Verbal Dyspraxia). As places at this stakeholder event will be limited please register your interest and further details will follow.

We are seeking a range of views and this invitation is extended to you in order that you can both participate and have your views heard. Further details can be obtained from;

John Levy (Project Lead for LSCG)

Mobile 07974 440969

e-mail ? [email protected]

Independent Consultant to Health, Justice & Social Care e-mail [email protected] web www.kiwiconsultancyltd.com

The consultation into what services should be provided for children with verbal dyspraxia is now live. It would be great if anyone with connections to verbal dyspraxia could respond to the consultation. It runs from today until 25 March. Thanks

www.ealingpct.nhs.uk/nuffield_consultation.asp

I have also set up a facebook page with some information about the reviews and tips that I found useful with my child on verbal dyspraxia and what to do about it in the UK - would be really great if others could post any useful information.
www.facebook.com/home.php?sk=group_175479645803269&ap=1

I strongly believe my son may have verbal dyspraxia and am keen to get as much help as possible. He will be 4 this June (2011) and his speech really is very unclear indeed. He has recently started following the Nuffield Dyspraxia programme with his SALT but I feel it may be helpful for me to learn more myself and possibly get additional help. I am especially keen to know more about getting an official diagnosis. I would be grateful to anyone who can give me more info or advice.

Hayley - I can't find your facebook page. Can you give me a pointer? thanks.

my 5 year old son has verbal dyspraxia and tongue tie.i knew when he was 15 months old something was wrong he wasnt trying to talk kept going to doctors they said he was lazy but i kept on and in the end my midwife said she would ask the speech therapist to see me for a chat straight away she agreed with me .at 3 years old he could only put two words together.now with a lot of work hes doing great hes in reception he can hold conversations although still uses me instead of i in sentences etc but getting better all the time.His school are great and he has a great speech therapist.please ask if i can answer any questions for you i had never heard of this until he was sent for tests at the hospital so i know how hard it can be.

www.facebook.com/#!/home.php?sk=group_175479645803269&ap=1

Hope this works.

Also, for anyone else reading this with a link to verbal dyspraxia:
I am involved with the review into services provided by the NHS for children with verbal dysrpaxia as a parent representative, looking at what services the NHS provides for kids with verbal dyspraxia. The deadline for responses is 25 March and currently only 10 parents who have children with verbal dyspraxia have responded.

I don't think enough parents with kids with verbal dyspraxia have been told about the review.

It would be extremely helpful if you were to add to the numbers and help push for better services for kids with verbal dysrpaxia. If so few people respond, then the conclusion may well be drawn that no extra services are needed - which from first hand experience is very definitely not the case.

This is the link to the consultation document:
www.ealingpct.nhs.uk/nuffield_consultation.asp
You can fill it in quickly and easily online here: www.ealingpct.nhs.uk/Nuffield-Questionnaire.asp or sending in your response by mail.

Additionally, if you have any contacts who also have children with verbal dyspraxia, or speech therapists, drs etc. with an interest or experience, it would be great if you could forward this on to them.

There is also a 'conversation cafe' from
12 - 2 pm on the 9th March at the Royal National Nose Throat and Ear Hospital. Refreshments will be provided and you are invited to drop in at any point during the advertised times to discuss the consultation with one of the facilitators. It would be helpful to know if you were coming for planning purposes but also please turn up on the day.

There are also the focus group sessions planned for 16th March from 2 - 4pm in Ealing Town Hall W5. This is not a drop in session as we would like you to be there for the whole meeting Please would you let Fiona Harcombe know if you are intending to attend this event [email protected]