Can you help me compile a list of 'What's What' - a brief description of 'SN diagnoses'?

[morningpaper]

Hello,

Gerry is making me do some work.

I need to compile a list of What's What for the SN area, which comprises a list of diagnoses and brief descriptions and a link to relevant charities/orgs.

They can be common or otherwise - hopefully, as it will be googleable, it might bring people to the SN boards, so to be honest, even if a diagnoses is not common it would be worth including because they are probably 'experts' here who might be able to help people out, IYKWIM.

Any suggestions would be welcome.

This thread is a very good example of why an sn section is so needed. It gets wearying if you have to explain everything over and over to people who have no direct experience of sn.
I also think links to relevant support agencies, such as Parents for Inclusion and the rest is a very good idea.

Why don't you just post a link to Contact-a-Family who have lists like this?

Four out of five children have no diagnosis so I am told by my son's Guys geneticist.

mindroom link

Even when you have a diagnosis, you're not automatically better off and there are still no certainties. Most things come in degrees from mild to profound and you don't always know where your child is going to fall in the grand scheme of things. On asking dd3s geneticist what her diagnosis meant for her, all she could manage was a shrug of the shoulders in a, how long is a piece of string, kind of way. As hairy said, early intervention is paramount, diagnosis or not.

though a diagnosis should at least keep you safer from accusations of child abuse or Munchausen by proxy, and make people think twice before they accuse your child of faking her symptoms

for families with pain disorders, a diagnosis is absolutely vital

it is soul destroying to be in pain when the doctors tell you you are just imagining it

I'm not trying to say that diagnosis isn't important, just that it doesn't always give the answers that you think it will.

I know, it seems highly unlikely Riven. She said the figure hasn't improved despite better chromosome testing. Perhaps something like autism is included in her figures since it is a diagnosis of symptoms rather than a known cause....?

Further on GDD, it's important to point out that, because it only really means that your child has missed some significant milestones, lots of children with very different issues can get the same diagnosis.

For example, DD (3) has hypermobile joints and hypotonia, but good gross motor skills. Her fine motor skills, speech and cognitive ability are very delayed in comparison. She also has a squint and hearing problems.

But her friend (6 months younger) has perfect hearing, can speak fairly well, does fiddly things with beads on a string, has lots of sensory issues around food and is only just learning to crawl. They're probably equally delayed, but have very different developmental profiles.

At our child development centre, if your child uses three or more services, eg SALT, OT, phsysio, dietitian, you are entitled to use the keyworker service, go on disability register (and therefore access specialised leisure services, etc)

I would also recommend Contact a family's database which is very good for further info.

D - deficits in
A - attention
M - motor control
P - perceptual abilities.

DAMP is used as an umbrella term to cover various combinations of motor control and perceptual problems in in addition to attention problems.

I hope you can include this one as initially loged in this afternoon on trying to find other people with experience of this. DS1's consultant has just brought this up as a diagnosis for him after his whole time in education has had teachers telling me something isn't right and then doing nothing about it! So far we'd looked into Dyspraxia/DCD and I'm not sure if this is part of it or even the same thing under a new acronym, would be great if anyone else out there had more of a clue than me!

sotos syndrome: very rare genetic disorder causing overgrowth before birth and in childhood, hypotonia and global developmental delay. Associated with particular facial characteristics. May or may not be associated with epilepsy and countless other conditions or minor abnormalities. Not necessarily as bad as it sounds on wikipedia. Oh, and then there's 'sotos-like' which means same characteristics, just the gene which is damaged in sotos, is fine.

This is one big job. Are you sure about this??

I think donkeyderby's idea is worth a second thought. Contact a family have already done the hard work (and presumably checked the spellings). Although have to say, I haven't managed to contact anyone through their site yet! MN much better for that

herjazz my mate said get in touch re cri de chat

give us an email cappuccino dot mum at googlemail dot com and I'll give you her email address

TheCappster and Herjazz, my son (3yrs old) also has Cri du Chat Syndrome.

I agree with the Link to Contact-a-Family which I believe has a good amount of info on particular diagnoses. Not sure you could usefully cover the enourmous range on here and one diagnosis can mean people who are poles apart

This is a really old thread (wake up donkeyderby!)
MoosMum2007 - just in case you're a newbie as I don't recognise the name, if you'd like to hear from other members whose children have Cri du Chat, do start a new thread with it in the title, I'm sure you'd get some replies. Good luck!