Don't know who to turn to next - feeling very alone.

[chickensaresafehere]

Dd2 (4.8),is non-verbal & hypermobile(not linked according to paed).
Over the past 3 years we have gone through numerous tests & assessments with various profs,but have not arrived at a dx.
SALT seem at a loss as to how to deal with her as does the comm paed.ASD has been ruled out.
At a recent appt with cons paed I expressed my frustration & loneliness at not having any help or answers with regards to her condition,he wrote to the neuro paed and this was the reply :-

'I am writing to let you know I have had a reply from Dr Curran,
He has re-stated something that I already knew which is that it is quite difficult to access therapies if it is outside your patch,equally I don't think we are convinced they would offer you anything different.

He did suggest however contacting the Worster Drought Society,as part of their problems they have very profound speech problems.I would make it absolutely clear to you that we have no evidence that dd has WDS but this group may point you towards specialist services for people with profound speech abnormalities.'

Have just received this letter and am sat here in tears.I was really hoping to get a more positive reply.Looked at the WDS society website & their forum but it doesn't look very active,it was months ago when someone last posted..
Where do I go from here?I cannot give up on her now,just feel like I am banging my head against a brick wall.Is there no one that can help me????

Sorry to moan,but feel this is the only place I can do it & be understood

Who in particular did you go to? can you afford going private? If you can, Jackie Harland from London childrens practice is really, really good.

Och, that letter is about as useful as a chocolate teapot, isn't it?

Is there a helpline or anything on the website?

What is the definition of a 'profound' speech problem? Surely it can't present itself in isolation?

Sorry, I'm not being particularly helpful either, but just wanted to reply really and send you hugs. Letters like that make the red mist descend!!!

Sorry you have been fobbed off. are you in Liverpool? when DS was 4.2 he was referred to a more specialist SALT team in Liverpool , the Early Intervention Service, which was reasonably good. Would have thought verbal dyspraxia would be a better thing for you to research than WDS, have they ruled that in or out at all?

I dont know what to say or advise but really wanted to send hugs x

I am dumbfounded. Why cant the PEAD contact these people on your behalf??? If they havent got any idea what is wrong they should at least be willing to investigate anything that will help, not just leave you in limbo like this.

Yep red mist falling here too

Thanks all
She has seen Dr Curran from AlderHey,but we don't live in Liverpool,that was the nearest paed neuro.He said she has isolated speech delay & he sees 1-2 cases a year of of it.Can't afford to go private,as that would be the next step.Should I put pressure on the SALT for a referral or make my point more forcefully to the paed??
Am at a loss where to turn& am getting angry now(after the tears&disappointment).
There MUST be somewhere that can help us&whats all this 'not my patch' shit??I just don't get it
But thanks for the hugs,they are gratefully received

Have the WDS perhaps moved onto fb? The society dd2's linked with, the forum used to be really active, but faded away and they now have a reasonably active fb acount.

Having said that, I would put pressure on the SALT. You can't just be fobbed off with no one can help because it's not their patch, unless they're offing further suggestions. What would they do in private that the NHS doesn't offer, that might be the way forward, if Dr. Curran has evidence it would help maybe you could investigate whether you could put pressure on?

She has so many symptoms of WDS,and apparently it is difficult to dx & not mant dr's are aware of it.But why would the paed say '.I would make it absolutely clear to you that we have no evidence that dd has WDS'??Surely he cannot say that if he is not a specialist in it?

same as dewe, do check the fb page, our dd3's support group is much more active on there now. Do you feel this is what your dd has? They could point you in the direction of a specialist who could dx if that was appropriate? Your letter reminds me very much of a conversation I had with dd3's paed, oh no, nothing genetic mrs ninja no idications at all, but of course once she got her dx he knew all along Bloody frustrating! I believe GOSH has a very good SALT team if that's any use.

Just received an appt through the post today with Wendy Blumenow at Neurosciences at AlderHey.Looks like Dr Curran came through!!
Anyone familiar with SALT there?
The fb page for WDS looks alot better,will have to hack dh's account & post something
Thanks again you lot,you always help

glad you are getting somewhere. no experience with alder hey salt, we only saw the community salts, as DS' problems were asd type language ones, but no articulation problems whatsoever

Oh thats good! good luck! I hope you finally get somewhere :)