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Post by caledonia on Nov 20, 2013 13:06:24 GMT
Hi
My first post on the new boards! I apologise in advance as it is a waffle as I cant get things straight in my mind.
DD (11 at the time but now 12) was diagnosed with combined ADHD at the beginning of October. The consultant made the diagnosis verbally at a meeting on the basis of meetings and discussions with DD and me, the conners assessments we both completed and a computer test. He said that he although he did not have the report from her school he was happy that she had combined ADHD and that was so severe (she was one of the worst he had seen) that medication was the only route as I was parenting her in exactly the right way. Although you dont really want news like that, it did all make sense and DD and I were relieved that a diagnosis has been made and there was light at the end of the tunnel. He discounted ASD at the time and said that attachment was involved too but the degree of th
The consultant works for CAMHS but does some private work and we went to him privately (we had to travel over 400 miles round trip to get to him) because our local CAMHS has a 12 month waiting list (we are still on the waiting list), cant see her until may 2014 and I wanted to get her assessed and diagnosed before she starts secondary school in summer 2014.
Yesterday I got an email from him saying that the school has now completed the Conners assessment , that their assesment indicates that she shows no signs of ADHD and so he can now not diagnose her with ADHD. I am bewildered as the school have done nothing but complain verbally to me about her behaviour for the past 3 years. - she wont sit still, she pokes at everything, she constantly interupts, she always wasnt attention, she is rude and very emtionally sensitive - key signs of ADHD in girls - and yet when they fill in the forms they say all is fine.
I know that generally an ADHD diagnosis cant be made unless therw two sources of refeernce but I also know that ADHD in girls is different from ADHD in boys and that girls often 'cope' in school but not at home and that some people are diagnosed even with no signs at school. I have asked him if he can call me to discus things further as I dont know what to do now. I have not yet spoken to DD about it as once she got over the fact that she was 'destabled' (her word for disabled) she was glad that there was something she could look to rather than her being "bad",
If anybody has experience of being told their child has a diagnosis then having that diagnosis over turned or can offer me any advice at all I would be most grateful.
Cale
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Post by donatella on Nov 20, 2013 14:06:15 GMT
Middlys psych at camhs was initially reluctant to dx ADHD because the Connors that school had completed didn't match the one we'd completed. This was despite the fact that he was regularly being excluded at the time and they were completely unable to manage his behaviour. I gave psych school reports and correspondence - exclusion letters etc - which totally contradicted what they'd said in the Connors. Then he dx and medicated. And the Ritalin makes an enormous difference so I've no doubt it's the right one.
i suppose the other thing to consider is whether the fidgetiness etc is sensory rather than ADHD? My daughter was tested for ADHD as well as asd but it was discounted. She was though dx with asd and she does have some sensory issues. Has your daughter been assessed by an OT? May be worth at least discounting it?
Ive found the Out of Synch child a good read for identifying sensory issues.
So frustrating for you xx
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Post by peartree on Nov 20, 2013 14:20:12 GMT
Hi cale  Ok This is the same child who had ADHD The same child So I'd explain that you've told dd this is what she's living with And that Camhs need to support you with I'd be tempted to ignore the revised questionnaire responses All the best with the meeting |
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Post by donatella on Nov 20, 2013 14:31:25 GMT
www.addiss.co.uk/adhd.htmThe problem is that symptoms have to be present in two setting to get a dx so school clearly don't want to admit that they're not coping. May be worth having a look at the dsmv to check diagnostic criteria or ask psych what other diagnostic tests he's made or will make.
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Post by gertiesquidge on Nov 20, 2013 16:09:45 GMT
Hi,
I think as donatella says, the problem is the school. You need to go back to them and ask if they have kept a copy of the Connors Questionnaire they filed in and get them to justify it, bearing in mind their verbal comments. Could you ask if the local Parent Partnership could support you for this meeting? We have found PP to be very supportive to both us and school at Little Prince's Annual Statement Reviews.
And on a personal note try and hang on in there, I know what it's like living with an undiagnosed ADHD child and how stressful it is, but the difference in him when he started taking Ritalin was nothing short of miraculous. Both me and his class teacher shed a few tears on his first medicated day at school when he managed to write 5 pages of work, when previously he'd never managed more than a few lines. It's moments like that that make all the fighting for a diagnosis worthwhile.
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Post by caledonia on Nov 20, 2013 18:05:46 GMT
Hi
Donatella - I had not thought about sensory issues before - she hates labels and things so it might be worth looking at. I am going to ask the consultant what other things he can do as he was so sure - to the extent of saying it was severe enough to need medication.
Peartree - my ramblings were confusing - the diagnosis was made before the school's connors report had been submitted so the diagnosis was not formalised but he was so sure thats what it was. I have made an appointment to meet with the Head to discuss this tomorrow with the copies off all three connors documents - the one I did, the one DD did and the one the school did to look at the vast differences. DD has two teachers, one who has complained about her and another who I have neve spoken to. It was the second one who completed the form - I am not sure if this makes a difference.
Gertiesquidge - I am on the Parent Council - we dont have local parent partnerships in Scotland so hopefully I will get somewhere. DD is not too disruptive at school and does fairly well academically and there are kids in her class who are much more disruptive. I just cant believe she does not wriggle in her seat at school, does not constantly pick up things and fiddle or chew things or interupt repeatedly. She bottles up issues from school and kindly shares them with us. I have decided tonight that I am not going to do homework with her anymore as it is so stressful for all of us. School commented in how good her homework was and DD said it takes ages and she makes a fuss and shouts and screams and cries all the time and the teacher just smiled. She did her homework tonight and it is such a mess - perhaps they will rethink things.
I might see if her Stagecoach group would be able and willing to complete a Connors questionnaire for her. They have had her for 5 years and constantly say she needs to focus, think about what she does before she does it, and figits but they manage her well.
thanks all for your support.
Cale
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Post by gertiesquidge on Nov 20, 2013 18:13:38 GMT
Good luck cale, let us know how you get on with the school. Our school has recently set up a homework club which has been wonderful at taking the pressure off trying to get it done at home, perhaps you could push for one to be formed at your school? X
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Post by bagpuss72 on Nov 20, 2013 20:18:59 GMT
I am sorry to hear of your situation, I understand your frustration and hope that you can resolve this in the best way forward for your daughter. We are going through something similar with our 8 yr old lad, so sorry I have no pearls of wisdom to share, just wanted to wish you good luck.
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Post by caledonia on Dec 9, 2013 13:30:38 GMT
Me again!
An update on the saga of diagnosis, or non-diagnosis.
I went to speak to the Head of DD's school to discuss their response. She did not know they had been asked to comment and stated that the teachers probably did not know enough about ADHD to fill in the forms helpfully and that as DD had only been at the schoool for seven weeks they probably did not know her well enough either. Both are valid points and we agreed that the consultant should phone the teachers and speak to them directly. The dance school where DD goes for 5 hours a week completed the conners questionnaire and the strength and weaknesses questionnaire and it seemed to match mine quite well. I sent it to the consultant as the 'second setting' for his assessment and also stated that I had spoken to the school and asked if he could call me to discuss what they had said.
The consultant, without contacting me has written to DD's GP (not me) copying it to DD's old school (not her new one) saying that although the conners scores from me, DD, Dance school and all other observations, including his, say she has ADHD because school haven't reported it she cannot be diagnosed. I don't understand this as there is nothing in the ADHD diagnosis material I have found that says it must be present in school, only in two settings. He has said in the report that he is surprised taht school dont report it as everyone else sees it but this does not help.
Am I wrong about tinking that the two settings dont need to include school? Also I paid for a private consultation and I had not given my premission for him to contact anybody until I had seen what he was saying so I don't think he should have sent it to anyone, and particualrly her old school. Again, am I wrong with this?
After four phone messages and two emails he am really struggling to deal with DD - I have gone back to doing EVERYTHING for her from tidying up behind her to helping her shower and dress so we can do things and not wait for 2 hours while she showers - and the temper tantrums and arguing back are so difficult to deal with on an hour to hour basis.
Thanks for reading
Cale
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Post by donatella on Dec 9, 2013 14:49:38 GMT
www.additudemag.com/adhdblogs/19/10158.htmlI can't find anything that says it gas to be school - just in two places. Diagnostic criteria gas changed slightly in dsm v - it is usually school but I'd press him on that because nowhere does it say it has to be school. I think he's judged being lazy.
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Post by gertiesquidge on Dec 9, 2013 23:20:21 GMT
I totally agree with donatella, all I've ever seen is a mention of two different settings. The obvious ones for children are home and school, but I've never seen mention of it having to be school.
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Post by caledonia on Jan 31, 2014 13:47:58 GMT
Quick update.
Life in the Caledonian household is getting more and more tense. DD is struggling with ADHD attitude and temper tantrums, combined with massive surges in hormones - periods started last week - while DS (13) is dealing with his own hormone issues. The Caledonian house is now a battlefield.
Consultant has called the school and spoken to the teacher who says DD is very bright and shows aboslutely no signs of ADHD, always does her homework to a high standard, has lots of friends but can be rude. Therefore he cant diagnose her because school don't have an issue. DD has not done homework since October and I wrote to school explaining this was a battle I was not willing to take on. She is bright,and because of this she manages to cope at school. She also says that she holds it together in school because she doesnt want to get shouted at. But as we know, bad days at school make things so much worse at home.
I have twice written to consultant asking why he is ignoring the fact that she has ADHD is two different environments - home and dance classes - and that HE told DD she has it and that she needed medicated. Still no reponse.
I think my next step will have to be a final letter saying that if he doesn't respond I am going to have to go to his professional body and seek clarification and see if that gets a response.
Can anyone advise of anything else I can try?
I am getting worn down by all of this.
Cale
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Post by milly on Jan 31, 2014 17:44:19 GMT
I guess the need for him to get confirmation from school is that the 'two settings' thing is to rule out situation specific bad behaviour - eg down to a troubled relationship with a parent or a teacher. So I can see that school saying they don't see it would concern him. The point is ADHD is an underlying condition that the child has in every setting, so should be apparent at school. I would have thought you need to pursue it further with the school. Maybe they don't know her well enough? Maybe the teachers don't like to admit there could be problems? Or maybe school suits her so well that the symptoms are minimised. If she is bright and enjoys her work, then it's possible she concentrates well on it and very few problems arise. Or the teachers are particularly skilled at managing ADHD-like behaviours and really don't see the problem. Or just possibly (I am not doubting you believe she has it) she doesn't actually have ADHD but something else is causing the issues?
I would meet with school again and explain your concerns and see if they will modify their judgement. If the doctor still won't budge (and I find doctors always ask if there is a problem in school and I always feel I have to justify myself particularly well if there isn't - so I am sure it's quite common) you did say you could have a CAMHS appointment in May - didn't you? Not so far off now. Our dd was diagnosed by CAMHS, after a bit of pressure from us. Or I suppose you could go back to the GP and say things are very bad and perhaps you might get access to a more urgent appointment.
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Post by ham on Feb 1, 2014 7:34:06 GMT
Could you ask to try some meds that might help with the behaviours you experience in the home.if the consultant won't maybe the gp will.they don't neccsarily have to be traditional ADHD meds.
My Dd takes clonidine normally used for blood pressure but a side effect can calm people down and it help her.
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Post by peartree on Feb 6, 2014 9:59:14 GMT
Caledonia (((hugs)))
Listen, I'd just go for a second opinion
Just because the school are bringing absolute no help to the situation a wise psyc would simply 'take a view'
Great ormond street national children's trauma unit comes to mind
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Post by doubletrouble on Apr 29, 2014 13:31:25 GMT
Hi, Just come onto this forum but have been around AUK old boards for years. So just read your post. Was wondering how you were getting on with your DD's ADHD diagnosis. We had a similar situation with our DS when asked school to fill in Connors and when applying for DLA for him. Came back as if there was nothing wrong with him at all. Turned out his teacher had a teen with ADHD & decided herself that our DS in her opinion didn't have it! Our DS & DD had major problems in unregulated situations - out in the playground, at games etc. which the teacher didn't necessarily see. I was able to get the CAMHs community nurse come in & do her own observation and luckily DLA phoned up with queries and spoke to Administrator who had seen the 'real' child in after school club and outside when she policed the playground.
Just wondered if your DD's problems are more social ( as are our DD's) and don't necessarily show up in the class room so need to be looking at other situations.
We are in Scotland too. |
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Post by caledonia on Apr 30, 2014 12:02:01 GMT
Hi Double Trouble
We are still struggling on.
We had our first appointment at CAHMS last week and saw a nurse who was lovely but a bit clueless. She said that there were not issues with DD after a 45 minute chat and that there was nothing they could do for her. She then said even if its ADHD she will grow out of it as an adult so its not a big deal but if its attachment disorder then she has it for life - jaw dropped at that one.
I said that I had been parenting DD for seven years, there was definitely an issue and that her response was not acceptable - I got quite assertive! I queried her expertise and ADHD and attachment disorder and she admitted it was not extensive so I suggested she went and spoke to a colleague who had experience of ADHD and attachment disorder and then call me back to confirm our next appointment.
I got a call back saying they would see DD again in about 8 - 12 weeks. Two days later I got a letter with an appointment for early May so we will see what this brings. It does worry me that we are in a remote part of Scotland and I am not clear what expertise our CAHMS have but we will just wait and see.
DD does struggle with social situations and is unable to self regulate. In the classroom she is desperate for approval so I think this help modulate her behaviour but on tough days at school the behaviour at home is 'interesting'.
I'll keep you posted re CAHMS.
Cale
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Post by doubletrouble on Apr 30, 2014 22:37:22 GMT
Have P M ed you.
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