Got Comm Paed assessment appt......what to expect?

[Becaroooo]

Ds1 has got his appt with the comm paed on May 23rd.

What should I expect? (Our GP referred him at my request - literacy difficluties and suspected dyspraxia and APD)

I have written a (3 page!!) summary of ds1's health issues and problems since birth and was going to take a copy with me to give to the paed?

Will they even read it? Should I try and e mail it to them prior to the appt?

No info on the letter about how long the appt will be or what will happen at it.

Thanks x

Becaroooo

The Medical Research Council (MRC) published an APD pamphlet in 2004 which can be downloaded from the http://www.ihr.mrc.ac.uk/index.php/products/display/leaflets MRC web site or the APDUK web site or read on line if you scroll down the page on click on the picture of the wolf.
You may find taking a copy of the MRC pamphlet to these meetings useful as it will provide the UK definition of APD for all.
The combined handout mentioned in a previous post, includes a copy of Ideas to be Considered Prior to Creating an IEP for an APD which includes all the issue for all who may have APD so you will have to select the issue that may apply to your son. Our Combined handout is currently being used by the NHS as part of their APD advice web page.

For an APD assessment / diagnosis you currently need a GP referral to Great Ormond Street Hospital. (In the near future there will be more regional APD assessment centres.) you will also need a the results of as recent hearing test so that any hearing impairment can be calibrated into the APD assessment.
APD assessments have a battery of Diasgnostic tests which can take half a day or more, and the recommendation is for a Multi - Discipline (multi-professional) assessment Audiologist to daignose the APD, Speech and Language Pathologist to assess the affects of APD on speech and language development, and a Psychologist to assess how living with APD has affected daily life. Hopefully this multi-disciplione assessment will become a legal requirement for future APD diagnosis in the UK.

Going back to 1998, it was from our local Consultant Peadiatrician that we first heard the words Central Auditory Processing Disorder, or CAPD as it was then, and we had no idea what CAPD was, and all the information about APD had to be found from USA sources via the internet.

Re the dyspraxia, has your DS had reports done by OT/Physio? When my DS was dx, the comm paed went by these reports more than anything either the hv, gp or i had to say.
From memory (5 years ago now) - it was a long first appt. going through family history, the pregnancy, birth, milestones etc etc. He had not read in detail any of the paperwork that i had given him. DS had collared him as he walked in the building to talk to him - explaining how he was going to download the pictures from his new camera and e-mail it to his nana. He was 3 at the time.
The appointment was a good couple of hours.

dolfrog ds1 is undergoing private retained reflex therapy with INPP at chester atm and it is they who have mentioned APD....he is having an audiology (?) test next week. They do not dx however, so its only a medical opinion, I guess. They offer a treatment via audio CD (basically listening to a specially made CD 15 mins per day) I think it is called the "Johanssen" treatment????? It was their physiological psychologist who mentioned dyspraxia after assessing him.

Reading up on both dyspraxia and APD, I feel that they are correct dx for ds1.

I will be printing out those links later, thanks.

Just out of interest....is speech delay a major factor in APD?

aunite He hasnt seen anyone yet...except the private RRT. This will be his first appt. I am assuming he will want ds1 seen by a SALT/OT/EdPsych etc???

Becaroooo

Speech delay is an early sign of APD, we have to be able to process and reproduce the whole sound of a word.
Most who have APD are not able to process the gaps between the sounds which can make up a word, which means that we are notable to identify the different sounds. This can also be a problem if someone talks too fast, as we are notable to process the gaps between words, so to us is is just a blur of sound.

There are no programs which can help all who have APD including the one you mentioned, which is similar to the Listening Program, and both are based on the earlier work by Alfred Tomatis. So be careful of any sales pitch.

Programs can only provide a basic type of coping strategy, but the coping strategy that the program provides or tries to develop, may not be the coping strategy your son has already been developing since he has been aware of his APD, which for most is from birth. It is human nature to find ways around our cognitive deficits or disoders using our own individual cognitive strengths to develop alternative skills as work arounds or coping strategies.

Everyone can lip read, but it is only those who need to use and develop this skill you do so and use it effectively. It was only after the Direct of the Institute of Hearing Research told me this a couple of years ago that i realised that I use lip reading to help me cope with my APD. For me the biggest coping strategy is reading body language, which is a problem when using the telephone, and which is why i tend to be phone phobic, as are many others who have APD

They usually ask you questions and, as part of assessment, give you a questionnaire to complete about his birth and development to date.

lizs hmm...should I even bother to take what I have written??

dolfrog Is GOS the only place to go for a dx in the UK? I ask as we live in Derbyshire! Dont get me wrong, we will go wherever we need to, but I imagine that the GOS waiting lists are pretty long?

Do I need a referral from my GP for GOS or the comm paed?

sigh...am so confused! Feel that I would like ds1 to have the hearing test next week BUT not sure now I want him to start any therapy til he has been assessed by the comm paed and team......sorry, this is all so new to me and I really dont know what I am doing...

Becaroooo

The first UK APD clinic was funded at Sheffield University, and run by Speech and Langauge Pathologist Dilys Treharne, and some of her patients came from your area.
The Medical Research Councils Insititute of Hearing Research (IHR) is based at Nottingham University. When the IHR won government funding for their APD research in 2004, the government via the NHS did not renew thier funding at Sheffield.
The first thing the IRH needed to do was to develop some new universal APD diagnostic tests for APD to replace the old language based tests. These tests have been developed by the IRH with Great Ormord Street Hopsital (GOSH)(children), National Hospital for Neurology and Neurosurgery (adults) and others including Dilys.
These new APD diagnostic tests went through the "Ethics Procedure" 2009 - 2010 using many potential local assessment centres in the UK, and one in Greece. The next and final stage more beaurocratic is toi have these tests recognised as the official diagnostic tests for the official APD disability.
Hopefully this last stage will be completed soon so that there will be more APD assessment centres around the UK and take the burdon off of GOSH. The IHR estimate that 10% of children have some degree of APD.
But at this point in time GOSH is the best place for an APD assessment and the only facility which offers a multi - discipline assessment.

Becaroooo
you need a GP referal and the results of a recent hearing test for GOSH.
waiting time for an apointment usually 6 - 8 weeks, and appointment usually a further 6 - 8 weeks.
Our Youngest was referred last year, and his secondary school have found this assessment most informative, as have the local speech and language support, as they can contact GOSH for more information and advice.

Becaroooo

I do understand about being new to APD, I help run the APDUK help line and try to explain APD to many parents, I has taken me some 13 years to get to what i know now, and you have only just started to try to work out and understand this very complex disability.

A couple of bottles of red wine may help. lol

ooohhh I used to work at Nottingham University Medical School!!! (in 2001/02 before I had ds1)

So GOSH is the only place atm then?

Just had an e mail from INPP and their equipment (headphones) are broken and have had to be sent away to be fixed so ds1 may not have the hearing test now after all!

How would I get a referral to GOSH for ds1? Is it even possible?

Sorry for all these - slightly dense - questions! You are being very patient with me!

Becaroooo - always take what you have written. Any documents that are relevant. Even if they don't read them there and then, you can refer to them throughout your conversation. I would also get a list together of the chronological development milestones, sitting, crawling, walking, speaking words, sentences etc etc. Also with behaviours, how often do they happen. In fact lots of things that can be quantified - hours slept, toilet, samples of writing/work etc .I still find that even with totally unrelated appointments (seemingly) that often these questions are asked and i always used to feel like a right airhead when i had to sit and work something out.

thanks, will do x