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Possible ADHD in 6yo ds

(2 Posts)
GinAndSonic Tue 17-Nov-15 11:40:52

I posted in childrens health a while ago about ds having NF1, a genetic condition. Between 60-80% of children with nf1 have learning difficulties, and of those a significant proportion are diagnosed with ADHD. Saw the geneticist and the specialist nurse today. Both agree that ds is hyperactive from what they saw, which was pretty typical. Geneticist says it's up to paediatrician to decide if he needs assessment, diagnosis, medication etc for hyperactive. Specialist nurse thinks he seems pretty typical of the kids she sees with adhd, and says around 50% of her patients with nf1 have ADHD. Shes going to visit the school to speak to the teachers to see what he's like there (he's much better than at home).
He's a sweet, intelligent, lovely boy who seems upset by his own impulsive behaviour sometimes. I'm worried about him falling behind (at the end of reception he was almost meeting end of year 1 targets) because of the hyperactivity and how easily distracted he is.
What can I expect if he's assessed? What's the process like? Is medication always needed? And where is good for clear, easy to understand information? I don't know much about adhd, and I really need to now. I have to be an advocate for him if he needs. Because the things that grab his focus and calm him are school related things like writing, he presents much calmer and more well behaved there, and if they don't feel he needs assessment or diagnosis because of this I'm worried I'll be left to deal with his chair throwing etc at home. His constant humming, clicking and squeaking, tapping have me half mad as it is.

ouryve Tue 17-Nov-15 11:55:17

The process involves various questionnaires and observations in multiple settings. In our experience, it really dragged out, but was worthwhile and DS1 (atypical ASD and ADHD) has been doing well on atomoxetine for about 5.5 years, now. We can tell when he's outgrowing a dose because the impulsiveness and restlessness comes back - we're just about to increase his dose after an early puberty growth spurt (7cm and 7kg in 6 months!) and evenings are very clattery!

Some people do well without medication, but I get the impression that, by and large, it's people without compounding difficulties such as learning difficulties or ASD - part of being able to compensate requires the mental and emotional resources necessary to construct a routine and to recognise a lack of focus and work on improving it. A lot of people who are unmedicated often end up self-medicating in later life with endless cups of coffee (stimulus) or alcohol (shuts up a buzzing brain) or worse, so avoiding medication isn't always ideal.

Something else to look at is sensory processing/integration. There's a wealth of resources on this and you'll find lots of suggestions for things to help satisfy and/or quell the restlessness. For DS1, it's piles of cushions and a weighted blanket. DS2, who has ASD,likes lots of things to snuggle up to. I've bought him a sheepskin for Christmas - he spent the walk to school, this morning, trying to rub his cheek against every hedge we passed - not advisable given that there's a lot of hawthorn hedges in our village!

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