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Post by fuzzywuzzy on Jan 27, 2014 23:19:40 GMT
Naughty Daught...... 9 years old .......... going on 19...... ..........going on 3! Gorgeous, bright, articulate, funny, warm, cuddly, affectionate, perceptive......I adore her x x x diagnosed with ADHD last year......after 3 years of trouble and struggles at school......and at home.....but, just to add to the fun, rarely in front of grandparents ........ doing much better at school now, but definitely doesn't like it still....I have a good relationship with school but they still have an awful lot to learn .............still, I took in lots of ADHD literature today to help them along a bit... Also.....applied for a statutory assessment.....rejected.....as are 99.9%.....so now appeal will be heard at tribunal on 4th March.......lawyer instructed ready for battle... .......mum written brilliant appeal (according to lawyer) ready for battle ( )may possibly get help from IPSEA/parent partnership/ADDISS too Awaiting appointment with pediatric bipolar specialist at Maudsley, Dr Stringaris today, following ADHD specialist clinic appointment......mph dose increased from 20 XL in morning to 30 XL.......afternoon dose for homework.....increased from 5 to 10...... and going to trial melatonin increase from 4mgs to 6 told me today "I don't want to grow up, mummy"........ Haven't stopped ever since......in between at self, contrarymary and Kathymelmore anon.........thanks for listening.......x x x
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Post by Kathymel on Jan 28, 2014 14:28:29 GMT
Life is never dull, eh?
Hope the leaflets help.
Good luck with everything and hope the increase in meds does the trick. x
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Post by fuzzywuzzy on Jan 30, 2014 0:14:06 GMT
Interesting in view of contrarymary's post today on behavioural/neurodevelopmental disorder.... Shire sent me loads of teacher leaflets on ADHD.....and one parent leaflet....daughter confirmed that teacher has the one for teachers on her desk.....went away feeling quite pleased with self.... the parent one is worded neurodevelopmental....and gives brilliant diagram of brain explaining synapse, re uptake etc... teacher one.....very first page says behavioural condition ..... Nothing about long-term problems.... Has a heading 'why is taking the medication important?' and then ducks all the important stuff, just wishy washy load of nonsense 'could be a valuable method'.....which is listed 5th out of 5 possible treatments.... i.e. nothing about the facts...70% are helped tremendously....overwhelming majority of experts believe it is a first-line treatment in moderate plus cases, along with interventions it does mention comorbidities.....and learning difficulties.....which is good..... and does give direct quotes from kids, which is great
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Post by Kathymel on Jan 30, 2014 7:42:00 GMT
I had read the teacher leaflet but hadn't noticed that meds were listed 5th. Strangely restrained of Shire actually, given that this is part of their bringing-Elvanse-to-Europe push.
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Post by fuzzywuzzy on Jan 30, 2014 8:10:58 GMT
Thank you for that KathymelCannot quite believe that this extremely obvious fact managed to pass me by!?!?
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Post by fuzzywuzzy on Jan 30, 2014 21:57:50 GMT
Just photocopying.....or brainwave ......maybe I should scan instead....all the paperwork ready to send as evidence to solicitor..... has to be in by Tuesday.... he just told me today that he feels we have a strong case....not a borderline one...so the panel should hopefully decide that a full assessment must be made.... don't want to get my hopes up too much....I know sooo many people who did not get that result... but feeling chilled p.s. note to self..... I may contact Shire, if when I get my act together and mention the large discrepancy
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Post by fuzzywuzzy on Feb 14, 2014 14:26:36 GMT
Hi everyone, so much to update here, but for now, a bit of a predicament The weirdest thing has happened....a while back my daughter's GP, who is lovely, called me in to say that despite approved funding for a referral to go ahead with Dr Gillian Baird, for some reason it couldn't go ahead....I originally chose her because she wrote an article about overlap with ADHD and childhood bipolar.....I just assumed that we couldn't see her because she had gone on to specialise in autism....she's the biggie that EVERYONE wants to get to see...or because she was retiring etc etc.... So, I persevered and got psych at CAMHS to refer naughty daught to pediatric bipolar specialist at Maudsley who is willing to see her and he has even rung my mobile, much to my delight.....all good again..... Then, today, out of the blue, there is a letter from Dr Gillian Baird's office with an appointment for my daughter to see her?!?!? I don't know WHAT to do.....She clearly believes in childhood bipolar but is a bit off the scene....he is more renowned currently Re bipolar but is cautious Re childhood bipolar.....arghhhhhh! Any suggestions? x x x
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Post by JJ not signed in on Feb 15, 2014 4:24:31 GMT
How close are the appts?
I'd take both - especially if they're close, no one will know til you've been - if the first one helps then cancel the second, if you don't feel the first one was listening or whatever, you've still got a second all lined up....
xxx
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Post by fuzzywuzzy on Feb 15, 2014 22:27:37 GMT
Oh my goodness JJ, you are a genius! I've been umming and ahhing over what to do....people have said go to both, but then I thought of the funding, I.e. they'll only give it to me for one, but that's something they'll have to sort out amongst themselves.....afterwards.....if I can get away with it Nothing to stop me giving it a try! Thank you x and sorry it's taken me so long to read your post.....brain been elsewhere! Hope all good with you X
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Post by Kathymel on Feb 15, 2014 23:46:11 GMT
I would definitely try for both. Which one is first?
If questioned afterwards (very unlikely, I think) I would adopt my most ADHD manner and tell them I just got confused about whose appointment was when and for what reason and then the phone rang and the kettle boiled and what day is it and oh, look, a badger!
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Post by fuzzywuzzy on Feb 17, 2014 17:20:53 GMT
Well I found out today.....that the Sunday Times Magazine article.....came out LAST week!?!?
and it was only by fluke I even found that out....
Whilst I have now managed to track down a copy, all the people I told about it, who would ordinarily have gone out of their way to purchase it, are far less likely to track down a back copy, especially since you have to subscribe fully to the paper, as opposed to be able to purchase a single copy online....so very angry and feel let down, probably because they didn't want to mention the book or my email address....
anyway, the article is good....I can't reproduce it here, for obvious reasons....I can produce my interview, but that doesn't give you the whole picture.....
Since this appeared last week....unbeknownst to me.....I am beginning to wonder whether it has anything to do with the sudden and unexpected turnaround regarding Dr Baird seeing naughty daught???
i have emailed an onside UK expert quoted in the article for advice on what to do, who to see etc.
just as an aside, it is not just ADHD overlap, there are many children diagnosed with autism in the UK whose parents have bipolar disorder....fancy that?
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Post by contrarymary on Feb 17, 2014 18:54:04 GMT
but how annoying for you bums. i would have might have broken my murdoch blockade for that i wonder if they would send you an emailable copy for you to be able to send round to family and friends - maybe worth contacting the journalist and doing the "disappointed not to have been able to use as opportunity to raise awareness among family & friends blah blah" thing? and remember that you never know who else you might have helped.... well done!
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Post by fuzzywuzzy on Apr 29, 2014 8:25:09 GMT
Cognitive testing was carried out by a local authority Ed Psych at school on my daughter last Friday..... very interesting She excelled at all the verbal articulation they gave her 3 words and she had to say how they were connected.....they gave her 'governor, president, ruler' expecting a simple answer = leaders......... daughter impressed them mightily with her answer = politics! But then she was seen calculating simple maths sums on her fingers.....forgetting half way through a sum whether she was adding or subtracting, which I kept telling them she was doing, but the school kept denying...... I should imagine it's quite difficult getting the answer right in those circumstances!!! She also cannot keep the times tables in her head and she got the 3 times table mixed up, so sad for her but pleased that this was demonstrated..... was fuming on the day itself, because all the adults involved had a lovely, friendly chat with me first which was a good start and set up a good rapport, bearing in mind the awful relationship they had set up with me via the first appalling ed pysch involved....and then they spent the next 15 minutes trying to dissuade me from sitting in on the assessment, even though I'd already informed them very politely but strongly IN WRITING that I INTENDED TO SIT IN ON IT , so that then ruined the mood somewhat... their reason given to me for not sitting in on the assessment turned out to be a load of nonsense too....they said that I would be a distraction......because of this I was made to sit behind my daughter's eyeline, which was fair enough, and conscious of what they'd said, I sat there as still as a statue and as quiet as a mouse, whilst the ed psych's top boss sat in on it, in my daughter's eyeline, and spent most of the time doodling, dropping her pen and apologising about her rumbling tummy!!??
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Post by annie on Apr 29, 2014 20:16:45 GMT
Hi Fuzzy Well done your daughter and well done you for sticking to your guns and being present at the assessment!! It's astonishing how far LA's will go to keep parents outside the assessment process. Having supported a parent through the assessment process ( 20 months before the LA agreed to a Final Statement and only then we had lodged it with the Tribunal did they actually capitulate) There must be some good LA but ours certainly does not have the child's needs centre stage. Good luck with it all. I realise you have engaged a solicitor but if ever that doesn't become an option, have a lokk at www.ipsea.org.uk - a national charity for parents of children with SEN. annie
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Post by fuzzywuzzy on Jun 19, 2014 21:39:56 GMT
Well.....the latest in this saga...... the bad news is that I found out today that the local educational authority, following statutory assessment, have decided NOT to issue a Statement (of educational needs) for my daughter... ..and to issue a note in lieu....which is not worth the paper it's written on... .....should have seen it coming really.....HERTS LOCAL AUTHORITY SIMPLY CANT BE TRUSTED TO DO THE RIGHT THING.......oh, well, round 2 of the battle... so, I guess I'll be seeing them back in front of a judge....again.....
and, winning..............again!
totally unrelated good news....gorgeous naughty daught just got through to the audition recalls for a forthcoming BBC drama 2nd audition is Wednesday, so I'm crossing my fingers.....she needs all the non-accademic help she can get!
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Post by fuzzywuzzy on Jun 19, 2014 22:25:40 GMT
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Post by petra on Jun 19, 2014 22:48:10 GMT
Deleted because not remotely useful or helpful!
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Post by petra on Jun 19, 2014 22:51:41 GMT
Deleted because even less helpful and constructive than last post! All the best with it fuzzywuzzy - I don't understand it all, but I know you will get to where you need to be in all this in the end. Your daughter is lucky to have you fighting her corner....lots of children don't have this x
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Post by fuzzywuzzy on Jun 22, 2014 10:40:46 GMT
Thank you petra x I know that I have to keep pushing on, for the sake of my gorgeous girl, but my God I am so battle-weary....I know, only too well, that you unfortunately know this feeling too... I have now fought about 7 battles over the last 3 years, of various different kinds, and it's true that I've won them all, but it sure does take it out of you....I think I'm looking at another year....and 3 more battles.....and then I just want an easy life! The only thing I would say is that I have only been able to win each of these battles since knowing what I was up against i.e. bipolar and ADHD (way prior to diagnosis of either....or any meds) I could never have done it without that insight, so it's all been for the good.....just sad to think of what I might have achieved prior to this, had I known...anyway, onwards and upwards... Soooo looking forward to a simple life after that!
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Post by contrarymary on Jun 23, 2014 7:14:02 GMT
bums fuzzywuzzy the LEA are ..... buzzards aren't they?! so annoying the mountains they make you climb to make them Do their jobs. here's to your next Everest expedition then... (i know you will overcome but such a bummer that you have to) and fingers crossed for weds then - nice to have a positive to be rooting for
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Post by fuzzywuzzy on Jun 23, 2014 10:45:39 GMT
Will tell you all what the sneaky buzzards have done in a bit....when I've calmed down!?! The trouble is I've read so many mumsnet posts.... annie's posts.....and spoken to so many disgruntled parents...that I am totally prepared for their rubbish .....and indeed looking out for it like a hawk Just waiting for their rubbishy letter to come through the post now (I impatiently found out over the phone) so that I can send my notice of intention to appeal....
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Post by petra on Jun 23, 2014 22:50:48 GMT
The only thing I would say is that I have only been able to win each of these battles since knowing what I was up against i.e. bipolar and ADHD (way prior to diagnosis of either....or any meds) I could never have done it without that insight, so it's all been for the good... Couldn't agree more. The revelation of Adhd has been nothing less than a complete life changer and is beginning to truly revolutionise my life. I began learning about it 16 months ago - which has been a very bumpy ride - very much exacerbated by NHS...But, I wouldn't trade my new found knowledge for all the tea in china!! To me, my life is in 2 parts...pre knowledge of ADHD, and post..I can only see my life becoming increasingly more streamlined, focused and effective. It's like I no longer feel like the rug is being pulled from under my feet - I now know the missing pieces of what's going on, and in particular that my old default answer of 'try harder' isn't the answer.
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Post by fuzzywuzzy on Jun 26, 2014 0:08:59 GMT
The only thing I would say is that I have only been able to win each of these battles since knowing what I was up against i.e. bipolar and ADHD (way prior to diagnosis of either....or any meds) I could never have done it without that insight, so it's all been for the good... Couldn't agree more. The revelation of Adhd has been nothing less than a complete life changer and is beginning to truly revolutionise my life. I began learning about it 16 months ago - which has been a very bumpy ride - very much exacerbated by NHS...But, I wouldn't trade my new found knowledge for all the tea in china!! To me, my life is in 2 parts...pre knowledge of ADHD, and post..I can only see my life becoming increasingly more streamlined, focused and effective. It's like I no longer feel like the rug is being pulled from under my feet - I now know the missing pieces of what's going on, and in particular that my old default answer of 'try harder' isn't the answer. petra....this is so true....and so articulately put....haven't stopped pondering on it....as we do ....ever since.... ---------------------- gorgeous naughty daught going to the Maudsley tomorrow....well, today now.....to see pediatric bipolar specialist....which is exciting and nerve-racking, but worthwhile since it took 3 years to get to this stage....and, boy oh boy, are their symptom and functioning reporting systems far superior for youngsters than anything else I've come across so far.....brilliant questions, totally covering everything....AND....all filled out online....no rubbish, old, boring, badly photocopied, standard one size fits all paper questionnaires!
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Post by contrarymary on Jun 26, 2014 7:35:40 GMT
good luck fuzzywuzzy - hope it is as helpful as you have hoped
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Post by petra on Jun 26, 2014 15:29:17 GMT
Been thinking of you today...I hope it was a positive experience for both of you xx
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Post by fuzzywuzzy on Jun 26, 2014 17:35:58 GMT
Michael Rutter Centre (part of the Maudsley) = brilliant place.....bright, modern, great facilities... Dr Stringaris = amazing man... we were there for 4 hours....he and his team listened....they didn't think I was mad, stupid or deluded...or that I wanted her to have it......they said I 100% did the right thing being concerned and pursuing the appointment....she is showing traits, and in view of the family history, she needs to be monitored.... he's recommending new course of meds to alleviate side effects (hair thinning) which will also help with anxiety and irritability.. oh....and guess what else he said? ............ she absolutely MUST have a STATEMENT!!!
I could have kissed him.... ...oooh, simply can't wait to tell the local authority!!!
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Post by Deleted on Jun 26, 2014 17:38:30 GMT
...course of meds to alleviate side effects (hair thinning) which will also help with anxiety and irritability.. Can you tell us what that is?
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Post by fuzzywuzzy on Jun 26, 2014 17:42:28 GMT
He mentioned 3 different possibilities....one which is not yet licensed, but unfortunately my brain only 'heard' the stuff about the Statement...
was it intuitiv? Something like that?
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Post by petra on Jun 26, 2014 17:44:27 GMT
That's all wonderful news fuzzywuzzy and how lovely to be affirmed, confirmed and validated. You deserve to celebrate!! Good job you didn't actually kiss him though!
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Post by Deleted on Jun 26, 2014 18:34:12 GMT
He mentioned 3 different possibilities....one which is not yet licensed, but unfortunately my brain only 'heard' the stuff about the Statement... was it intuitiv? Something like that? Trade name Intuniv (guanfacine). Licensing? What's that? (it's been in trials for a couple of years). If it's prescribed could you keep up informed (dosages, perceived effect - anything you notice). I've not heard of anyone having it yet and I'm curious as hell.
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