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Post by annie on Nov 19, 2009 22:19:36 GMT
Hi giddy
Just wanted to say the ICD-10 diagnostic tool is the one used by the majority of psychiatrists in this country and when it comes to dx Adhd, this tool only picks up the most severe symptoms of Adhd.
However if DSM IV is used it allows people with moderate symptoms but still suffering severe impairment, to be included into the dx of having Adhd - and as such medication can be a useful treatment, to allow other interventions, such as additional support in school to show significant benefits for the child.
Glad your not giving up and good luck with your next appointment
annie
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Post by Deleted on Nov 20, 2009 22:19:45 GMT
Thanks, We had a cunning plan to speak to my youngests teacher and explain to her the problems we have with our daughter at home and about. Perhaps if she understands why we are wanting a dx she might be more forthcoming with the information. We went for a bit of a meal tonight to cheer wife up, and apart from our kids rowdiness and youngests dancing we were doing OK until we had to drag youngest out of hiding under someones table after she had been running around the tables like a loon. Not one of her better days. She is seems to be erupting a lot at home now and has lots of emotional ups and downs. Not sure how much of it is her overacting but much of it is caused by her sister.
Thought we'd try something similar with the eldest and give each of her teachers a bit of an explaining letter on which they can write any comments that wouldn't normally be put on her report card. Not holding my breath.
btw Funding has been refused for my referral to Maudsley and wife in on anti-depressants. She's been treading water with our problems for a long while now and the prospect of having to deal with them for the foreseeable future has got the better of her. My sanity is being preserved by pro-plus, caffeine drinks and chocolate. I drink everything like pop so I'll keep away from the alcohol.
Sorry for the depressing post. If I have any uplifting news I'll let you know.
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Post by annie on Nov 21, 2009 19:06:51 GMT
Hi giddy
I think it's an excellent idea to ask all the teachers to keep a record and give you honest and open feedback. Sometimes teachers don't like to give the downside in case it offends parents!!
However if you let them know you have major worries about your daughters and because of that you need more detail than they would normally give - let's hope they work with you
annie
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Post by Deleted on Nov 23, 2009 19:00:06 GMT
Thanks annie, I think you've been telling me this all the time haven't you Me dum dum. We are also going to ask youngests gymnastics teacher to put a comment in writing or fill in a connors if we can get one - it might help. I've uploaded a video of my youngests Christmas play a couple of years ago. Quality isn't brilliant and I've had to shorten it. See if you can guess which one is mine! She is like this all the way through. The audience laughed so much that the school decided to put this sheep dance in its own section of the DVD Attachments:
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Post by .... on Nov 24, 2009 0:56:54 GMT
Lol. That is so sweet Giddy. Just when you think you can't take more they make you remember why they are so worth it.
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Post by Deleted on Nov 24, 2009 18:20:11 GMT
Oh no couldnt view it on this pc..shame..
Sorry to read you were refused for referral, what was their reason??
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Post by Deleted on Nov 24, 2009 19:01:46 GMT
Shame you can't see it simone. I laugh my socks off everytime I see it I'll reply to you question on a different post in a more suitable area of the forum........ ooh the suspense!
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Post by forgetnotme on Nov 24, 2009 19:08:32 GMT
so which one did you say was yours giddy? I remember my daughter had a smile that would make everything fine. in fact i think she still has it.
on a more serious note sorry to hear about your funding
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Post by Deleted on Nov 24, 2009 21:18:15 GMT
Hi guys, I've shoved an explanation in thread 'funding deferred' in 'symptoms & diag' section
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Post by Deleted on Nov 29, 2009 22:24:16 GMT
OK. Spoke to youngests teacher & deputy head on Friday. Tried to explain some of youngests problems but deputy head was quick to jump in with the 'ole 'well my daughter does that too'. She didn't seems to grasp that our does it all of the time. Any examples of her at home carried no weight. But they couldn't deny her always forgetting jumper/coat at home time and how she is not allowed to play with one of her friends etc. They had to admit that, even after the extra tuition, she is still below the expected average and this did not agree with the edu psychs report. They are a tough bunch. Some of her friends have commented that she is funny in class and does things to make them laugh but this is denied by her teacher too. I tried to relay some of the things that Annie and Roland had advised earlier in this post but my brain isn't as sharp as theirs and it could have been said much more assertively. Whats really infuriating is how they always tell us how nutty she was at the beginning of the year and how much she has progressed since she started school. Teacher did say she was ADHD like at the beginning of the year, but when we asked how she was doing at the time she said 'fine/no problems'. In the end I got annoyed and told them no matter how many green certificates she gets at the end of the week, it won't change how her brain works and she will never achieve her potential unless we get her the help she needs. If my brain was on the ball I could have made some real progress in the meeting. Not much good thinking of what we should have said after the event. We gave them a Connor's questionnaire and asked them to fill it in realistically bearing in mind some of the things we brought to their attention. When we got out of the meeting our daughter was sobbing in the library so it might confirm some of the emotional issues we told them about (but they denied).
They sent her home twice last week because she was upset with tummy ache - turns out she had a falling out with her best friend on both occasions. The second time she had a big to-do in class.
Not expecting too much from the Connor's questionnaire. I expect I will be writing a letter to the school governors next.
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Post by Deleted on Nov 29, 2009 23:13:34 GMT
Just a thought for the moderators. It would be nice if the advice on this thread could be summarised and put in some sort of order, like 'what to do next if that fails', and put somewhere on the forum. It seems like there are a lot of parents struggling to get a diagnosis for their kids and we wouldn't have got this far if it wasn't for everyones help and advice. ...and it would save them having to read through all my waffle
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Post by .... on Nov 29, 2009 23:18:55 GMT
They sound like our school Giddy. Half of the staff I've had to deal with believe one thing and the other half another.
A few years back I learnt to start asking questions of the person in front of me regarding their experience of ADHD. If you can figure out who among the staff has never seen ADHD for example, or those who are convinced it only presents in boys then perhaps you can avoid asking those people to fill in things like the Connor's questionaire?
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Post by Deleted on Dec 9, 2009 18:57:20 GMT
Arrrrggghhh we are soooooooo annoyed After chasing the school for the Connors q we found out that youngests teacher handed it to the SENCO co-ordinator to fill in. We told the school that it needed to be filled in by her teacher and they said they will sort it out for us, but when we went to pick it up they told they had phoned the paeds secretary and she said they don't need to fill it in, so they didn't. Went to the appointment with paed today. But they decided we weren't worthy of the paed and instead were seen by an administrator (or something). It would seem he made the appointment to inform us that CAMHS are a lot higher level than they are and they won't interfere with CAMHS decision (didn't see that coming much). Fortunately, although youngest was having one of her better days, she was 'busy' (annoying) enough to make them wonder. We eventually got to see the paed and we tried to explain to her the saga behind CAMHS involvement (not interested). She said that there is only one level of ADHD and you either have it or you don't, I think she was trying to suggest that all ADHD kids fail tragically at school and are big problems to the teachers. Gave her many examples of her forgetfulness, scatterbrained, impulsivity. Showed her the diary we had been keeping of her behaviours and problems this last few weeks including time she eventually gets to sleep, number of times she gets up in the night and how early she always gets up in the morning. Gave her the Connors questionnaire filled in by her gymnastics teacher but paed says this doesn't count (she scores high on Hyper & ADHD scale even though she couldn't answer all the questions i.e. can't sit still on her chair etc.). We requested that she give us the diagnosis and we don't want CAMHS involved any more (only way to get her to do dx). She eventually agreed and gave us a Connors questionnaire for the school to fill in (aaaaarrrrghhh!). We told her about our lack of faith in the school and their constant reluctance to give us any information and asked if there was a way to get school to fill in the questionnaire honestly and accurately. She said she would send them a covering letter. We managed to persuade her to see us in 2 months time. We gave the teacher the Connors and explained everything and that we needed her to fill it in. She said she will pass it straight to the SENCO co-ordinator to fill in. What is wrong with these people. I thought teachers were supposed to be there for the kids benefit! Frustrated . The world is mad.
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Post by .... on Dec 9, 2009 21:41:07 GMT
Little bits of progress. And LOTS of running in circles by the sounds of it then Giddy. I'm pleased you didn't let them dismiss you from the off - good on ya. On the upside - I've only ever dealt with a specialist paediatrician for my DD. And the dx process wasn't too painful. Interview. Tests for differential diagnosis. Conners and then diagnosis. Its clearly going to be difficult to get your Conners done properly, but once you do. I think you might actually be getting somewhere, albeit slowly.
I wonder if you could get an appointment with the teacher? And have her fill it in in your presence? Even if she then seals it and sends it off to the paed independently.
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Post by andy12345 on Dec 10, 2009 1:21:11 GMT
Seems that teach wants the teaching rights but no responsibilities in writing. Weird screwed world.
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Post by Deleted on Mar 17, 2010 22:17:33 GMT
Hi, sorry its been a while but I thought I should give you an update on how things are going with our youngest. Can't remember the dates and can't for the life of me find the letters with the details. The missus knows but she is in bed so I'll try to give you the jist of our situation whilst I'm in the mood for it. Things seem to be starting to move again and the paed seems to be taking us more seriously. She sent us a summary letter before our last appointment in Feb. She stated that the Connors q that school filled in originally 1 1/2 years ago, scored a few points over the minimum required for a dx. ADHD NW are a little miffed as to why we haven't got a dx. Wife and daughter went to Feb appointment. A rep. from ADHD NW was supposed to be there too but we somehow got dates mixed up. Paed seemed to suggest it could be a combo of ADHD autism. She said she didn't want to start our daughter on meds just yet. She has asked that we take our daughter to the speach therapy clinic (or something) and her social interactions will be observed at school by the clinic. The specialist at this clinic was a little bewidered as to why our daughter had been sent there because she was 'brighter' than the children she usually sees. Also, CAMHS want to be involved again and have made an appointment for us in April and the paed wants to see us again in June. Seems like its going to get messy again. The paed sent a copy of the front cover of the latest Connors q filled in at school. Not suprisingly is was filled in by the senco bod and not the teacher as requested. It looked to score much lower than we believed it should (although she did score a 3 for excitable) and much of it contradicted what is always observed by the paed & CAMHS. Even so, I scored the Connors and she got and ADHD index higher that the orig connors with hyper and inattention problems. This might come as a bit of a shock. Rightly or wrongly we have changed school. The old school was 4 miles away and we have been wanting to move her to the nearer school for years (15 mins walk away). But she was settled in at school and had a best friend there and also a boy she considered as her other best friend even though she wasn't allowed to play with. But in Feb, for some reason, the school decided to find her best friend some new friends at her parents request. And then the b.friend had a Birthday party and invited all her new friends and not our daughter. So we asked our daughter how she would feel about moving to the nearer school and we took her for a school visit and she was more than enthusiastic to go. So we changed her school. She seems very happy there. The teachers talk to us! The teachers rate her at a much higher academic level that her old school but she has started getting headaches. The headmistress of the old school had suggested to the new one that we have changed schools in order to get a dx and although it might (or might not) help that wasn't the reason. I do go on a bit don't I!
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Post by annie on Apr 7, 2010 18:32:33 GMT
Hi giddy
Sounds as though you might be getting a little bit nearer to getting a dx for your youngest. It is incredible they have been faffing around this long!!
Any news about your other daughter and your referral to the Maudsley?
annie
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Post by Deleted on Apr 15, 2010 22:06:50 GMT
Hi annie, Sorry its been so long since my reply. It doesn't look like we will be able to get a dx for our eldest. She is very forgetful at school and has been in trouble a few times for forgetting to do her homework and being chatty and fidgetty but her school work is at an acceptable standard and CAMHS are not interested in her at all. So I guess nothing will be done unless things go bad at school. On the plus side we have used what we have learnt to help her with the memory problems and are encouraging her to set timers, reminders on post-it notes, calender alarms on her phone etc. Just wish we could get her to think before she opens her mouth and stop jumping to the defensive all the time and looking for an argument (wonder if they do an extra strong chewing gum to stick her mouth shut Thanks for asking. My referral to Maudsley is being processed and they have sent questionnaires to my Mum - a bit worrying because she is the only one left that knew me as a kid but we think she has ADHD so I am not sure if her answers will reflect how things were (it was over 30 years ago!).
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Post by annie on Apr 19, 2010 20:29:26 GMT
Hi giddy
Really pleased to hear your Maudsley referral is going ahead! You have really been persistent in making this happen so lets hope it's a positive outcome.
I'm really sorry to hear Camhs are totally disinterested in your eldest daughter and seem to be quite happy to leave it until such time as she is failing badly, whereby her self esteem will be in tatters. in my area we have 4 Camhs teams covering a population of about 100,000. I do know parents get a better service depending on which which Camhs team they are under. My advice to parents in my area is to go to their Gp and insist (and this is your right) to have their child dealt with by a specific Camhs team. Maybe Adhd North West have an idea about where the most experienced Camhs teams are in your area and could help get your eldest daughters care transferred to them.
Have to say I do think they are still dragging their feet over your youngest daughters assessment and the paed seems to be sending you all round the houses. I can well understand why Adhd NW are feeling peeved that your daughter hasn't already been given the dx. The paed. doesnt appear to be an expert on Adhd (it's the same in my area) and should know Adhd and Autism can co-exist but he/she should be treating the Adhd alongside initiating help from school and yourselves, in relation to her autism.
It's an uphill struggle for you and your wife and there is absolutely no reason why it should be this way. However I know neither of you are going to give up - good luck and keep us posted.
annie
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Post by Deleted on Jun 17, 2010 20:47:43 GMT
Hooray! We've finally got a dx for our youngest!!
I can't tell you how relieved we are. CAMHS had a big part to play in the decision.
We have been offered meds for her but the paed wants us to really think about it as she doesn't believe children should be given any drugs except in the very worst cases.
She is still behind in her classwork but she is so much happier at this new school. She has made new friends that live close by. We should have changed her school years ago.
Her class teacher said that the only way to see how she may benefit from the meds is to try them.
Everything we have read suggests we should give the meds a go. What do you think?
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Post by .... on Jun 17, 2010 21:16:06 GMT
Woo hoo! That is gd to hear! Know you've been trying to get some help for her for a while. Hav no opinion on the meds either way am afraid. But whatever you decide I'm confident you'll be doing the right thing. No-one knows kids like their Mum and Dad in my opinion, and you'll be the one most aware of the bias each opinion you are given comes with. Really pleased to hear your news
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Post by Deleted on Jun 17, 2010 21:17:43 GMT
Hooray !Ofcourse try the meds !Nothing to lose and everything to gain !You will be able to tell pretty quickly ! Good Luck
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Post by annie on Jun 23, 2010 17:43:34 GMT
Hi giddy
Just seen your post - thank goodness you've finally got a dx for your youngest!!
I'm a bit confused about what role the Paediatrician is playing. If Camhs have dx her why are they not treating her? It sounds as though your Paed. knows next to nothing about Adhd (thats why Nice recommended there should be specialist teams to assess, treat and dx Adhd).
Anyway, it's good news and I would definately trial meds but only if they are prescribed by a professional who understands Adhd and knows how to titrate (start low and increase medication in a systamatic way) the medication so your daughter gets the best possible benefits.
Any news about your Maudsley appointment?
annie
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Post by Deleted on Jun 23, 2010 22:42:19 GMT
Thanks for the support everyone.
Hi Annie, Its a wierd scenario. After CAMHS wouldn't commit to a dx they still asked us back a follow up appointment after we saw the paediatrician. We then had another appointment with the paediatrician and she said that CAMHS are satisfied enough to give a dx of ADHD. Its almost like they were testing us. The paediatrician also referred her to a speech & language and social skills therapist who went to see her at school and has now referred her to special classes during the holidays to help her with her social and language problems.
Its all brilliant news but this is the wierd bit. We were expecting the paediatrician to close the book. The Senco co-ordinator at the new school filled in a Connors Q and scored her very low for ADHD. It contradicted everything CAMHS and the Paed had observed themselves and all the Connors Q's filled in by her old school. The school had told the speech & lang therapist that our daughter had no problems but she saw different and commented to us that many of her social problems were consistent with her ADHD. She also noted her poor concentration and fidgetting. We had pretty much given up on a dx but were pleased that she was much happier at this new school than her old one.
I don't know what the normal procedure is, but the paed has faxed the prescription to our GP who will write the proper one. She will start on a low dose and we are due to see the paed again in 6 weeks. We need to look into the titration side of things because I don't know if it was mentioned and who will be over seeing it. How often do they normally look at increasing the dose until the right one is found?
I can't tell you how relieved we are at getting the dx. Such a relief!
Not heard anything from Maudsley. Phoned them up but all they could tell me is that its a bloomin' long waiting list.
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Post by annie on Jun 29, 2010 20:10:12 GMT
Hi giddy
This all sounds very peculiar!!
Why on earth are the Camhs team not treating your daighter? Why have they passed it to a paediatrician to prescribe? A Paed. who believes only "severe" children with Adhd can benefit from meds, and doesn't really think you should be going down that route.
If I were you, I would be asking to see the person, in Camhs, who made the decision to dx your child. If,as I was, assessed as needing a knee replacement I wouldn't expect that person to refer me back to my Gp to carry out the surgery - it's farcical!!!
Go knock some heads together - they're playing around with your daughter's future.
annie
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Post by Deleted on Jun 30, 2010 23:14:52 GMT
Yeah I know. The whole dx has been an 'experience'. I agree that we should speak to CAMHS again but its difficult to discuss anything without it turning a little confrontational. I'm also worried about rocking the boat.
She's a lot better on the meds. When she first took them she said that she felt like she was like a robot shutting down. It is much easier to have a conversation with her and she talks instead of shouts and she is not as hyper. The one 5mg dose only lasts around 3 hours with her with a hour of non-stop talking & bouncing etc. afterwards. Hope school can cope with that for now. We were planning not to give her any meds at weekend but already we are thinking that with them we could take her to the cinema.
We have another appointment with the paed in 6 weeks but the literature says that they usually increase the meds over 3 weeks. Not sure if we should leave it as it is until our next appointment or we should discuss it with the paed earlier.
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