Not quite Autism...

[vixen1]

Hi all,

My DS has been seen by a Neurodisability Specialist for the last year or so and is having various treatments including Speech Therapy, Physiotherapy, Occupational Therapy and Portage.

He has delays in all areas and many peculiar playing habits. He also has Hypotonia which causes him to fall and injure himself all the time. All of this really does have a profound effect on our whole family yet he can't be diagnosed with anything because he's too sociable.

We saw the Specialist yesterday and he's great. I'm just feeling increasingly frustrated that it seems like we'll never get any sort of diagnosis.

I feel so upset when DS has a public meltdown or throws a toy in another child's face. I'm at a loss as to what to say to people. I guess I feel that at some point I want a diagnosis from a selfish point of view becasue it would be so much easier to say to people "sorry, he has X".

I don't really understand how someone can have a condition that affects them so fundamentally yet I feel that professionals are basically saying he's not "bad enough" to be Autistic.

He's not got Autism but niether is he Neuro Typical. So where does that leave us??

I would so much love to hear from people in the same postion as us. I really don't know where to go with all this and I'm exhausted from analysing all the time.

Vixen, I used to work in a neurophysiology dept (doing research not as a clinician) however I am pretty sure (99.9 percent) that with absence seizures ( where child 'daydreams' for few seconds that if they don't have a seizure whilst having the EEG it will come back normal.

Do any of you claim DLA for your LOs?

What other help and services do they get?

I think we've been incredibly lucky with everything we have for DS, I meant to thank the Specialist but forgot that too...roll eyes

Fanjo - I'm not really concerned that DS will regress as I know it's not very common. It's just interesting to note that they can seem to deteriorate without actually regressing IYSWIM. There are things that DS did a year ago that no-one would bat an eyelid to but now he's still doing them and it's begining to draw attention...

Trouble - I remeber my Specialist saying that declaring an object is very different from communicating with people. Last time we saw him DS had a huge vocabulary but none of it was particularly useful - makes me realise how far he's come

Eek, I'm at work so I have to go... I'll be back!

Littlemissgreen - Thanks for that - so definitely worth keeing an eye on then. I'll keep hold of that video and show the Specialist... Do you know if absence seizures are linked with ASD and or Dyspraxia?

I don't know if they are related specifically to other conditions, but certainly in some cases a child may have more of them at certain times eg if they are anxious, and often they can be triggered by hyperventilating.
I would try and keep a note of how often they occur and if anything happened before hand just in case some of them have trigger that could be reproduced whilst he has an EEG, def keep the video.

vixen1 - we get higher rate care DLA for DD, as she is up during night too, no mobility though

Vixen1....Has your ds had a fragile X test done?

Pucca - Yes and I believe it came back clear - ANOTHER bloody thing I forgot to ask! Grrr. I assume they would have told me otherwise...surely? Out of interest, what made you think of fragile X? I only ask because I have been thinking of it a lot lately.

Trouble - what's an ICAN report?

Littlemissgreen - that's a really good bit of advice, I will definitely pay attention to what happens around the time. Strange question but can they happen frequently when a child watches TV? He sometimes seems to have a different quality to his gaze when watching something - different even from his usual telly watching gaze.

Forgot to say:

Fanjo and Trouble - It's reassuring to know that you may still be eligible even without a diagnosis. It's not something I think we need at the moment but we may do in the future.

I guess that in a weird way it's also reassuring to know that no-one's trying to tell me Owen doesn't have any difficulties... just that they don't have a name for those difficulties. I think part of my concern at not getting a DX is that it can sometimes feel that the health professionals are trying to diplomatically tell me that they think I'm a bit crazy and making things up! My rational mind has always told me that this isn't the case (after all look at all the services O's getting!) but my ever increasing paranoid mind thinks otherwise sometimes!!

Sorry, sorry, rambling....

Thanks all xxx

Vixen1...I don't know really but I have been reading alot about Fragile X lately (my ds is about to have the test done) most things you say about your ds (like my ds) seems to fit Fragile X.

With the tv, could it be flashing lights? I had a quick check up from some legitimate sources (as I didn't know for sure, and don't trust places like wiki as they can be written by anybody) and apparently in some cases absence seizures can be caused by photosensitivity (eg flashing lights, certain patterns).

Anyhow here is a link describing photosensitivity on an epilepsy page

Pucca - How old is your DS? What are his difficulties? xx

Thanks Littlemiss, that's really helpful although I can't see the link anywhere... xx

Doh! Sorry, got interrupted by DSs and just clicked post, here it is...
www.epilepsysociety.org.uk/AboutEpilepsy/Whatisepilepsy/Triggers/Photosensitiveepileps y?gclid=CPvC9LuAhaMCFQI-lAod0hE0cQ

Vixen1...My ds is 4yrs, he has global delay, many traits of autism (not diagnosed yet if ever), his eye contact one to one is not too bad but he freaks out in social situations, Sensory Processing Disorder, low muscle tone (mainly mouth), flat feet, highly arched palate, chronic glue ear (wears 2 hearing aids), an impacted bowel and he also has epicanthic folds.

He has many rituals and obsessions, his speech is awful, he knows a few colours but no numbers. His sleep is terrible, he is on fast and slow release melatonin, picolax syrup and lactalose for his impacted bowel and is still in nappies day and night (he was dry in day but was soiling all the time and started wetting too).

He has meltdowns frequently, he still eats bizarre things, sensory seeks all the time, and tactile defensiveness...it would take me too long to list everything.

We have been going to a child development centre for 15mths, and are currently awaiting a referral to CAHMs (appt on 8th Sept) i recently got a private OT to assess him, but the CDC have held their hands up as he will not interact at all with them.

/hijack for Fanjo re:MMR booster. get them to do a blood test to check immunity for the MMR diseases - as 1st MMR is meant to be effective in just under 90% of children - so chances are she wouldn't need the booster anyway.

Thanks, will ask about that