Here are some suggested organisations that offer expert advice on SN.
Channel4 news - ADHD drugs(35 Posts)
Ok so I only caught the end of it (currently recording Channel4+1) but did anyone else feel again it was yet more negative reporting about ADHD. Perhaps I am just a bit touchy about the subject (DS age 11 has ADHD and IS medicated) to suggest that our children are being 'drugged' unnecesarily.
I particularly liked (not) the suggestion that children with ADHD would benefit from behaviour therapy instead ..... it is a lovely sentiment but my experience (certainly in my region) is that it simply does not exist . . . I know because I have spent the last four years banging my head against a brick wall trying to find it and was finally told last year by CAHMS that the reason I cant find or access it is that it DOES NOT EXIST. My (quite extensive) research actually suggests that a combination of therapy and medication can be most effective for the majority of children than either used on their own - Thanks channel 4 for adding to the already widely speculative un-educated opinion that all us parents are shoving drugs down our kids throats as it is the easy option. How are we supposed to banish prejudice when the media keeps spouting this biast rubbish.
Rant over ..... for now ....
The ignorance about ADHD and particularly drugs to treat it is truly awful....
If there had been drugs when my DS was young I would not have hesitated! Sod what people think. If only I could have had a child who fulfilled his potential (v intelligent) and actually enjoyed decent friends and school instead of one intent on squandering every attribute he had and making all our live hell into the bargain.
Both my youngest are on concerta although DD2 now often refuses to take it 'as she doesn't need it' without it she is high as a kite but according to her I'm just stopping her fun, doesn't help that the Dr has told her once she's 16 its up to her if she carries on taking it or being passed on to adult team.DS has been on it since 6 and is hopefully getting the dosage lowered if the risperidone keeps working.
I still have family commenting on the fact that DD2 doesn't have it and doesn't need medicating we had to fight for her diagnosis at nearly 9 but they didn't live through the 2 hour tantrums at 11 years old or the attacks both physical and verbal off her DD1 at 16 semi left home and finally moved out properly at 18 because of her behaviour.
Opinions from the ignorant as usual. No parent would give their child medication unless absolutely the last resort.
Who put the suggestion of behavour therapy would be better instead??? Have they tried this out? would it be worth writing to channel 4 asking them to put there money where there mouth is as the saying goes? And maybe to a programme on the LACK of support any child with SN gets.
The biggest problem here is these "news reports" are being watched by a large proportion of the UK. Now I have no problem with Jo Public being mis-informed as they have little (if any) effect on my sons life, and they can spout off to their hearts content to their neighbours about what terrible, lazy parents we all our (after all they are all entitled to their own opinion) but the big problem here is that it is also being seen by teachers, headteachers, playgroup leaders, TA's, club orgnisers and heaven forbid DLA assessors. If
it was the headline of the daily sunshine, daily starburst or even the daily-wail then perhaps those with an ounce of sense would realise that it is just sensationalism for the sake of selling a paper but on the Channel 4 news it appears to have more credibility than the daily rags.
..... and those lovely professionals are being mis-informed / mis-led about a very real and disabilitating condition.
The report suggested that our children are being overmedicated for fun - yes I am sure that mistakes are being made in some instances but any parent out there at the crossroads of dx and where to go next will surely be put off the idea of meds now - thus preventing their child to potentially have some assistance to aleviate their symptoms.
I know meds dont work for all children - and they are certainly not a cure in any shape or form but PLEASE UNDESTAND help comes in all shapes and sizes - feel free to walk a mile in my DS's shoes before jumping to conclusions.
Thanks for the link cornsilks .... I think the link is alot less inflamitory than the item on the news tonight ...... x
didn't see the news
my ds is on meds (not for ADHD) which have made a massive difference for him. He's had no therapy alongside them though, even though on googling them I see it's supposed to be a must - which is worrying really.
We went the behavioural therapy route for years - of our own devising though, as again there was no relevant support in this area that my son could access - before trying medication about 18 months ago (ds was 10). The behavioural interventions did work, to a degree, but ds needed the right drugs to make that important leap into processing and understanding before we could see any meaningful progress.
It's taken all that time to tweak his meds to get them optimised and now we have a system that works, based on a combination of both approaches, and he's thriving.
BUT - we only got what we have because we went to a private consultant who would listen to us and not rely solely on inaccurate reports from ds's school that claimed he had no difficulties with them (utter lies, if daily conversations (unrecorded) were to go by), as the NHS had done.
Medication was a last resort for us and often is for many parents. But when it's needed it is absolutely vital because if the brain doesn't function adequately, no amount of behavioural interventions will change the way the child operates.
It always astonishes me that there still exists a belief that it's easy to get your child onto strong, controlled drugs, when the reality is it's bloody hard to get any consultant to prescribe unless there are damn good reasons for it.
My ds has just commenced Risperidone. Not an easy decision to make. He's ASD with newly dx OCD/Tourettes. He's 10.
I had to look at it this way..... If he had leukaemia, he would be treated with the appropriate medicines. My son (at the moment) is mentally ill. He's been given some CBT alongside the meds but, HE IS SO ILL, that it has been postponed until he is better able to access it (the CBT).
I just want to say a big fat "bugger off" to people who think we're all just happy to drug our kids. It's not for MY good, it's a last hope for HIS own good.
My dd is on Concerta (for almost a year now), and is now in an independent school. She is thriving, after two awful years undiagnosed, untreated and unattended in a state school. Finally a private consultation with a specialist doctor, the issue came to light. Medication and new school followed. No idea where to have access to behavioural therapy in my area.
It's not ideal, but it's miles better than it was a year ago - she is how a hapy child, thriving at school and developing good habits. Starting to control temper.
Family/friends/outsiders do judge and condemn without knowing what it's like, so the choice is between keeping it as a 'dirty secret' or standing our ground. The main thing is it is helping our dd, and we are a much happier family now - so others opinions matter less and less to me.
I didn't see the news - I do guess it makes good headlines to say 'lazy parents drug children', but will await the onslaught of criticism to surely come our way shortly!
That is really good news 'mothership' - itis great to hear that your dd is finally on the road to success - I feel for you (hug) as I know what it is like in the grey early days before dx - what dose is your dd on if you dont mind me asking ? - mine started on Concerta XL 18 mg about 3 years ago, moved to 27 and is currently 36mg. I have heard lower doses are usually more effective but was stunned to hear on the news last night that doses upto 100mg are within NICE guidelines (that really scares me!!!)
We used to have mega rebound problems at about 6pm in the early days until my chemist mentioned the possibility of a 5mg short acting ritalin top up at 6pm - evenings are now a lot less like a war zone than they used to be - shame that I had to get this kind of advice from the chemist rather than my sons current psychiatrist at CAAMHS!!! He also has melatonin to help to get him to sleep at night but he is very capable of 'over-riding' the effect if he is a bit hyper. They tried to change him to a slow-acting melatonin (to try to help KEEP him asleep during the night) but they had zero effect including not helping him get to sleep at all (never mind keeping him asleep!!!) So it is back to melatonin -
And if ever I need a reminder about how beneficial medication can be its between the hour of 7.30 to 8.30 every morning before his meds have kicked it ........ OMG ...... the same crazy chaos, daily - There is NO WAY he could be in school in that condition even with the best will in the world.
Please dont keep it as a dirty little secret - stand proud that you have the guts to fight to help your child ..... and it is a fight ..... but we are winning the war when our beautiful children are making good choices (that make us so proud) that they wernt able to reach before.
Feel free to stand your ground mothership .....I am standing right next to you x
It's ironic that people think it is handed out willynilly. Where I lived before TBH we were offered it at each session with comm Paed but since living here it was a real battle once we decided enough was enough and our younger of our 2 SLD boys needed 'something'.
We'd done the behavioural therapy stuff. In fact we are still waiting after...5 yrs now, for AST intervention ( a really intense behaviour therapy), we'd done the fish oils, the diet, the star charts blah de blah.
When after much fighting the stupid clinical psych who was apparently an expert in fragile x and my son cos she'd spent 2 lots of 15 minutes watching him in a structured environment with a 1:1, decided he didn't need it but that we needed parenting classes!!!!!! (he is the youngest of 4) and has a genetic condition (FXS) as there wasn't much wrong with him (erm...so why does he go to a school for SLD kids?) I finally got ritalin for him and the difference was immediate; he fell off the tumble dryer and didn't beat me up for it!!!
He's now on clonodine too. My other son is on nothing as we feel he doesn't need it but sometimes I wonder...esp now he's a teenager lol
I tried dipping my toe into the behaviour therapy route at home and read in a new book about one method called "assumed complience" ..... the idea is that you ask DS to do something in a way that assumes they are going to do it immediately and happily as they have already had positive feedback.
I tried it with my DS - "thank you for putting your plate in the kitchen" said I in anticipation .......
DS looks at me ....... looks at plate on the carpet ....... looks at me again and with that quizical expression asked "..... are you taking the p*ss?" He was I think eight or nine at the time.
Anyone wanna borrow a book ....... I think i have finished with it !!!
Thanks for your support runningonmt, it means such a lot! I am so used to the raised eyebrow anytime it's mentioned, that it feels completely new to speak to someone who understands!
I too have shelves full of books, done diets, starcharts, you name it. We finally bit the bullet, pulled all stops and went private, both for a doctor and for education. Her old school was unreal, with bullying on top of everything else. The senco came to the conclusion that it was my fault (we both work ft). How that woman walked alive out of the room I will never know!
My DD started on concerta XL 18 mg, it was uphill during the first weeks (ate little and slept badly, and very tearful). We did it over the summer hols, to make it easier. She soon started to notice the improvement herself, and we never looked back. She started new school last September and is doing really well. Her doctor put her up to 27mg last time we had a consult, something to do with bodyweight.
The biggest difference has been to the rest of the family, we are so much more relaxed and able to enjoy the children. And the satisfaction of winning the fight some days (not all!) and seeing her happy is the best.
can a private doctor prescribe meds or does it have to be NHS?
Oh my days runningonmt, that is hilarious. I remember the S&L lady suggesting me do the 'MR Tongue story' with my older DS who was about 3 at the time (now 14). Now for anyone who doesn't know what this i, basically you tell this story using your tongue (E.g. mr tongue looks left n right before crossing the road, moving your tongue left n right). The idea apparently is to get your child using their mouth muscles to help them speak. I looked at her like 'Are you serious?'!!! Anyway duly sat son on lap facing sideways (he can't do front to front) and tried with 'Mr Ton...', I never got any further before he tried to rip my tongue from my face.
She suggested at our next meeting that we should leave that one for a couple of yrs. No sh*t Sherlock!
A GP cannot prescribe Ritalin or such drugs Cornsilk as they are unlicensed. You need a paediatrician. They can then give you the prescription to give to your GP's practice on repeat. You can only get 1 month at a time.
BT is alright as far as it goes Pipin, but 1st you need to be able to reason to some extent with the child/ren. My youngest DS is so off the wall he cannot think for more than a milisecond and cannot be reasoned with. Everything with him must be immediate. And while you're trying to answer one random question he is asking he is already asking another 5 questions, none of which he listens to the answers for! He has FXS and one aspect is echolalia and pallilalia which drive a saint to drink!
My other son is more calm and can be reasoned with a little bit at times (if he's in an amenable mood which is not much right now cos he's also pubescent!) so BT works better with him, although he'll still lose the plot big time.
It's a pain just getting the month at a time when DS first got prescribed Ritalin it was a 3 monthly prescription, if were going away and need it early I have to go and make an appointment to get it and explain why to the GP he hates it as he says it criminalises parents.
Not so much in the UK but more in the USA some who have Auditory Processing Disorder (APD) have been miss diagnosed as having ADHD, there are some areas of diagnostic overlap, and the attention issues that contribute to dyslexia. So for sometime now I have had a [[ Pubmed ADHD research paper collection]]
I thought you might be interested in these papers
The neurobiological basis of ADHD
Changes and Challenges: Managing ADHD in a Fast-Paced World (which you can download as full pdf for free, top right)
and Attention deficit hyperactivity disorder: A review for family physicians which includes a useful table Criteria for the diagnosis of ADHD
sorry did not include the full link Pubmed ADHD research paper collection
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