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I have concerns about DS. But I'mnot sure

22 replies

TheRealMBJ · 15/08/2012 22:44

And I know it'll be an uphill battle getting any form of assesment in our area as the lead development paed is an arse. Eg he won't 'allow' a diagnosis of ASD until a child is 7 years old, which goes to show what his attitude is...

So, I want to explain what I worry about on here and get some feedback as to whether I am just a neurotic mother worried about normal-ish toddler behaviour or not.

DS is 33 months old. He was a very very difficult baby, unhappy and inconsolable forest of the first 6 months of his life. For no discernible reason. Diagnosis was colic. As he started becoming mobile, he became easier and more settled. At 12mo he had a urinary tract infection and a convulsion and was admitted to hospital. At 18 mo he had another fit, again associated with a febrile illness and was admitted again. He has had nerous fevers since and no further fitting.

He reached most his milestones on the early side of normal. Except for speech and language. Which is delayed. He was never much of a vocaliser.

We have had a hearing assessment, which was normal and an SLT assesment and start of a few sessions of therapy as he is quite behind in his expressive language and speech. His understanding seems to be fine.

My concerns are:

Speech and language: his words are very unclear, he has only about 50 or so, and they can only be understood by close family and even then often only in context.

Occasional vigorous head shaking, head banging (although only on soft furnishings) and hand flapping

Lack of emotional understanding. He cannot seem to differentiate between different emotions in other people.

Frustration and quite physical and extreme reactions to frustration. Often kicking/biting/hitting and throwing himself backwards

High level of sensitivity to noise.

Mostly he just seems to be much harder work than his peers.

He is charming, makes reasonable eye contact and the above are all quite subtle.

He has a general paed appointment soon (for his convulsion follow up) and I am just wondering how much I should flag up, should I push for further referral or just to continue follow up (instead of discharge)...

I dunno. Help me please.

I would be happy to be pointed towards recommended reading (don't just want to google) also

Thank you kindly

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SilkStalkings · 15/08/2012 22:59

Am on phone so can't do a link but if you google 'NAS red flags health professionals' there is a useful checklist. I would push and push because it will drive you mad not knowingSmile.
Do you have any ASD peeps or eccentrics in your families at all?

AgnesDiPesto · 15/08/2012 23:27

Look up MCHAT. If you are still concerned insist on a proper assessment. Look up new NICE guidance on diagnosis and loads of government stuff on early intervention etc

If he won't do an assessment you may be able to get one by the back door by applying for a statutory assessment (to see if needs a statement of special educational needs) - see NAS or IPSEA websites. It does not really matter if needs one or not as the council have to get evidence from health to support that an education assessment is not necessary and they can't do that if health won't rule autism in or out. Most requests for statutory assessment get turned down at 2 / 3 but you have a legal right of appeal and the council will not want to go to tribunal without having evidence your child does not have special educational needs requiring a statement. So you can use the statementing procedure to force a health or educational psychology assessment.

Also have a look at AFASIC which lists various language problems - some can mimic autism but when the speech improves the frustration and autism like symptoms reduce. ICAN website also might be worth a look. Has SALT ruled our verbal dyspraxia?

babiki · 16/08/2012 07:23

It's bad the doctor doesn't want to test before the age of 7, what about early intervention? Can't you go private for the diagnoses? I had to go private for quite a few things initially to convince GP something is wrong, and it helped. My ds will be 3 in November and will be tested for Asd soon.. Hope the Salt is good at least, she could raise concerns too. Maybe you could look at Nas website and ask them about diagnosing in your area.

babiki · 16/08/2012 07:24

It's bad the doctor doesn't want to test before the age of 7, what about early intervention? Can't you go private for the diagnoses? I had to go private for quite a few things initially to convince GP something is wrong, and it helped. My ds will be 3 in November and will be tested for Asd soon.. Hope the Salt is good at least, she could raise concerns too. Maybe you could look at Nas website and ask them about diagnosing in your area.

TheRealMBJ · 16/08/2012 07:29

Thank you Smile

Yes Silk, I think my brother probably is on the spectrum although he has never been diagnosed

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TheRealMBJ · 16/08/2012 09:59

So I've done the MCHAT and it has come up as 'At Risk for Autism'. I'm still not convinced though

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HotheadPaisan · 16/08/2012 10:36

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HotheadPaisan · 16/08/2012 10:41

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TheRealMBJ · 16/08/2012 11:06

Will look into PDA and sensory processing disorder thanks.

He does interact with other children and does have imaginative play. Although it does seem different to me.

He will be going to nursery 2 mornings a week from September.

We have only just started on the road with SLT so I don't think they have ruled any specific conditions in/out.

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HotheadPaisan · 16/08/2012 11:15

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TheRealMBJ · 16/08/2012 13:41

For me the hardest thing is the outbursts, I know he's 2 and 2 yo can have tantrums, but I almost never see other children his age behave the way he does. Totally losing it over the smallest thing many, many times per day.

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HotheadPaisan · 16/08/2012 15:50

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TheRealMBJ · 16/08/2012 16:43

Hmm... I think my brother may have PDA

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HotheadPaisan · 16/08/2012 18:37

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TheRealMBJ · 16/08/2012 19:52

Yup that's my DB to the letter

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HotheadPaisan · 16/08/2012 22:43

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HotheadPaisan · 16/08/2012 22:45

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SilkStalkings · 16/08/2012 23:40

Other PDA tips: try not to take things personally or you will get angry which reflects straight back at you tenfold, don't talk or ask questions during a meltdown. Llet yourself cuddle and sympathise afterwards - you won't be rewarding him for bad behaviour, he was simply trapped in a storm of panicked aggression and will now be exhausted and feeling pretty crap about himself.
Sorry to hijack but Hothead, we have a pre-assessment appointment with CAMHs next month woohoo! I pushed and pushed and said I just want some sort of generic PDD diagnosed, doesn't have to be any more specific than that given they don't know how to test for PDA here. He acts like one of those angry kids on documentaries with neglect, abuse or traumatic histories.

mariammariam · 16/08/2012 23:49

Forget the development paed if he's set in his ways. The statementing medical report will be from him, and will be vague and unhelpful. Go and talk to your GP about other specialists locally; if the paed is an arrogant a* to parents he's probably not much better to colleagues.

The general paediatric follow-up for febrile seizures sounds like another opportunity. All being well, two fits both with fever will take them 2 min to dismiss, so make sure you have everything ready to twist the appointment into a useful second opinion on asd/ language delay.

You might get lucky and see someone who is actually interested in children's neurodevelopment. Or a keen junior doctor looking to impress the boss, whose interested in anything and everything.

HotheadPaisan · 17/08/2012 07:13

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TheRealMBJ · 17/08/2012 08:51

Thank you all. I will definitely use the general paed appointments in September. I like our general paed and he has a good rep locally. I have a medical background too so (although not fair) I find that the docs all treat me a bit like a colleague, which can be useful.

I will raise concerns again with the SLT and have made an appointment with my GP to just record my concerns again.

Feeling a bit more positive

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HotheadPaisan · 17/08/2012 11:38

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