Please or to access all these features

Add post

Watch this thread

Save thread

Start a new thread

Flip thread

Hide thread

My feed

Active Unanswered threads

Getting started FAQ's

Unanswered threads Acronyms Talk guidelines

Hide shortcut buttons

Talk

SN children

Here are some suggested organisations that offer expert advice on special needs.

Flip

Original poster

Difficulties Getting a Diagnosis

17 replies

YesAnastasia · 07/11/2013 10:55

I am hoping there is an (or a few) experienced mumsnetter out there who could possibly point me in the right direction in my research.

My 4yo DS is awkward/different in social situations but I don't think he know he is because he loves parties and being with other children and doesn't seem to notice that he's a little different.

He goes through phases of when he behaves like a little wild thing. He has problems with impulse control and has no real understanding of authority figures or the respect you must show to them. During these phases his sleep is affected with constant waking, nightmares and occasional night terrors. Also during these phases his eczema gets quite bad to the point when I have to use the steroid cream. He is violent, highly strung, prone to terrible tantrums and other things. This happens approx once a month, sometimes more, sometimes a lot less...

Then this goes away & he's back to the normal, sweet boy he was before. Except with his social awkwardness & ignoring. And a bit of naughtiness.

He has been to see a specialist in ADHD & Autism but we're not getting anywhere. I have to go into school most days when he's in these phases and They do recognise that he's not just naughty but can't seem to help it yet they need it to stop... I don't know where to go or what to do.

Sorry for the long post but I'll feel so much better if I can research a condition and feel it 'click' then start to help him. Thank you.

OP posts:

osospecial · 07/11/2013 18:23

Hi, not sure if I can't point you in the right direction but didn't want your post to go unanswered so bumping for you. I have learnt a lot from reading other posts on here, I spent a long time pre dx not knowing what was wrong with my dd, whether it was ASD or not but it can be such a long process. I just concentrated on what I knew DDs issues were, regardless of if she had ASD she definitely had a severe language disorder so I started there, reading lots of posts on here and reading any book recommendations I picked up as well.
Does your DS have any support in school? Do you know what seems to trigger his extreme behaviour? You could try keeping a diary to see if that helps identify anything? Does he find it hard to concentrate in school? Does he have any sensory issues causing the meltdowns?

osospecial · 07/11/2013 18:24

*can point you in the right direction

2boysnamedR · 07/11/2013 18:33

The meltdowns could be triggered by something a long time before the meltdown also so think about the entire day

Original poster

YesAnastasia · 07/11/2013 19:26

Thank you so much for replying (and the bump:)

What are normal 'triggers'? Would it be something fundamental like thirst or hunger like in babies or maybe a mean word from another child...? I have no idea what kind of thing I'm looking for.

I also don't know what comes first in his phases. Does his eczema irritate him so his sleep is disturbed or does the lack of sleep cause the eczema outbreaks and the behaviour?? I have no idea.

I do have the support of the school so far but I'm worried that I won't forever because he's so disruptive. Can they expel him? With or withour a diagnosis? We'd all be devastated if that happened. At the moment they're filling in a behaviour book so that can act as a diary for school & I'll have one at home then I can take them with me when I see the specialist.

I always like to read up on subjects before I see doctors so I know exactly what they're talking about. But with this, I don't even know where to start trying to find something that fits...

OP posts:

vorpent · 07/11/2013 21:03

Just wondering, have you looked into Sensory Processing Disorder? It can go along with ASD, but also can go with dyspraxia/dyslexia. It varies massively from one child to another, with different aspects of the sensory system affected. It can definitely look very like 'bad' behaviour, when in fact the child has sensory overload.

Try googling the Dyspraxia Foundation and the Dyslexia Association, as well as Sensory Processing Disorder. The Dyspraxia Foundation has a list of symptoms at different ages.

AgnesDiPesto · 07/11/2013 21:32

I can't really think what those symptoms would fit with. The outbursts seem too infrequent to be autism / ADHD

I'm totally speculating but have they ruled out everything medical

Could it be a severe reaction to something he eats?

Or mild seizures?

He could have social difficulties and something else - the two may not be related.

StarlightMcKenzie · 07/11/2013 21:44

I doubt it is this but have a quick look www.nami.org/Content/Microsites138/NAMI_Fort_Wayne_Indiana/Home128/Resource_Manual_for_Educators/Is_Your_Child_Bipolar.pdf

incywincyspideragain · 07/11/2013 22:04

My first thought is diet expecially with the eczema - I'd add food diary to the behaviour one and see if there are any links.

Only other thing to check is hearing and eyesight - sounds random but if there is something he is struggling with then its good to check everything he can see and hear so he can access the strategies (ds1 has no dx but aspergers/adhd traits and in reception had severe hearing loss due to chronic glue ear - behaviour fine at home and difficult at school - once hearing he could access the 'normal' strategies that the teachers were perplexed didn't work)

AgnesDiPesto · 07/11/2013 23:10

glue ear or something that flares up from time to time?

Original poster

YesAnastasia · 08/11/2013 00:34

I have been focusing on the Autism side of things because of the social problems but Dyspraxia/dyslexia seems like quite a good fit. The processing of information and the communication difficulties could be that. I also read one guy said when he was tired his symptoms got worse. Maybe the confusion & lack of focus frustrates him and causes the behaviour problems...

DH has dyslexia and possibly dyspraxia... why have I never thought of this seriously before?

Anyone with experience with dyspraxia who agrees or disagrees?

OP posts:

PolterGoose · 08/11/2013 08:27

This reply has been deleted

Message withdrawn at poster's request.

AgnesDiPesto · 08/11/2013 10:05

When DS gets ill his symptoms get worse. He is noticeably more severely autistic. Its like he has to try so hard to do things everyday that when he gets ill and doesn't have the energy to do this he regresses back. Even when he has a cold or something his attention levels etc go right down

So it could be a physical thing like allergy etc and then his dyspraxia is more noticeable.

bochead · 08/11/2013 10:24

Now DS is sleeping better his comms is deff much better. we are home edding this term. At school everything was just TOO much, & wound him up so much he could never wind down again properly, so we had lots of night waking, sleep walking etc.

The sleep issue is one that has aggravated DS's neuro-disabilties for years. Is the excema interfering with a good night's kip for your kid.

I have excema and can easily see how the constant irritation of a flare up would leave the brain so distracted that any communication or other sensory issues would get far worse. There have been times in the distant past when a bad bout of excema has left me unable to concentrate on anything.

It's so worth getting an OT assessment done. Knowledge of sensory issues in the public mind is derisory (inc schools) yet it can have a massive impact on behavior. As DS has learnt to understand his sensory triggers, so we'vebeen able to come up with ways to help him cope, and his behavior has calmed right down. Prior to this we'd looped the loop on adhd assessments four times at the insistence of various teachers, each time it came up negative as he isn't ADHD, but that's what it looked like to the untrained eye iyswim.

Original poster

YesAnastasia · 08/11/2013 11:40

That's interesting then Agnes. I feel like this has 'clicked'

I have eczema too - on my hands - and it's horrible (except when it's so bad I can't clean :))

What is your DS's diagnosis bochead and how do you deal with it a daily basis? Do you use the 123 magic book?

OP posts:

bochead · 08/11/2013 16:12

123 magic is utterly useless for DS - so many have tried and failed with this technique it cracks me up. . DS is deffo less able to appear "normal" when ill or tired though growth spurts also make his sensory stuff worse too.

ABA princiciples helped

DS is ASD phenotype with sensory & motor-coordination issues + a sleep disorder. His "diagnosis" is utterly useless in the real world as the authorities interpret it to mean 123 magic will work in mainstream and nothing is further from the truth.

lougle · 08/11/2013 19:55

Does the eczema come before or after the behaviour starts? Steroid rage is a real phenomenon, and it can turn people into absolute monstors. I used to be a nurse - it was amazing to see sweet little old ladies turn into huge strong fighting 'machines' during steroid therapy. So much so, that sometimes the only way to maintain their safety was to give haloperidol (a sedative) until the worst was over. Obviously, a topical ointment would be less severe, but especially if you cover the eczema after applying cream, it could be still quite potent.

2boysnamedR · 08/11/2013 22:28

My son has dyspraxia ( but no formal dx) he is mostly very placid and has SPd. From the sensory point of view he can get jostled about at pick up time and seen very introvert. Then when we get to the car he can explode and hit his brother. Mostly his meltdown is only held in for a short time and then short lived. But just to show it wasn't the car that triggered it, but the bustle of pick up time.

Flip