ADHD Results day tomorrow!!! Dont know what to expect???

[butty]

Hi all, as some are aware i am having serious problems with my just turned 5 year old girl.
We have been awaiting appointments since last march and after several appointments with peads and specialists, it was sugested that she has suspected ADHD!!
I have the appointment tomorrow to find out the DX and it is 1.5 hours long as child psych will be there.
If any one has been here before or has any advises, it would be gratefully appreciated.
Butty.XXX
PS: really dreading the outcome!!!

My head is going round in circles, the school nurse has just phoned to say that the peads referal for the bedwetting can't go ahead as they won't see her until she is 7 as that is the current criteria!!!!!!!!
How many more kicks in the teeth can i take???
I'm close to tears and just don't know what to do for the best!!!
Help me!!!!
Butty.xxx

i know how you feel.

i am so sorry- why do we have to push so hard???

It was the same with my getting a asperger's dx for my 8 yr old.... school said he was fine...so noone listens to the parent....but....school moan and complain about a child....EVERYONE listens!!!

Grrrrrrh!!!

Really makes me cross.

Now, as far as 'ANGEL' etc at school.....'MONSTER' (my words not yours!!!)...at home etc....

Well....in the case of leigh...he LOVED the structure and order at school.....and he was EXTREMELY rule bound....therefore in his case he behaved impecably at school (most of the time).....as he grew (he's 9 next month) he began to be a little less well behaved..... but by no means stood out as naughty.

So.... teacher would actually tell me that he was NO PROBLEM...

Sp then we'd go home at the end of his 'angelic' and CONTROLLED day....and all hell would be let loose......all the effort it took him to be 'so good' meant that his stress levels were sky high....and he was VERY HYPER for at least an hour after school (he's not ADHD really....just hyper if anxious etc)

It's VERY common in my experience to see this 'flipside' behaviour...when our kids have to 'fit into a world that is hard' all day long...then when they are home they 'let it all out'.

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cheers, it is so hard to hang on in their when there are real issues that need addressing.
She is as mrsforgetmenotful stated "angelic and conformative at school due to structure and then she is like the jeckel and hyde show at home and every where else.
I don't understand how they can rule adhd out because of schools conner report and apart from the fact i know 2 kids with ADHD, 1 who has never had any problems at school and the other totally off it.
I am also very close to an 11 yr old with aspers who was first DX with ADHD, he is a total angel at school but totally different elsewhere.
Chloe has an IEP set at school and even this has not been taken into consideration.
If it's not ADHD than god knows whats wrong with her, but theirs definately something wrong.
Every one who i told last night what the pead said was totally gobsmacked and one individual said are they blind??
They all see how things truly are, and i totally disagree with the system as hav'nt they worked out that school is a well structered place of routine!!!!
she is only just turned 5 and the real learning has not yet started, so i will see what she is like then.
I think i will train as a teacher and get her to call me MISS!!! maybe that will work along side our structered home routine!!!!!!!!
Butty.xxx

Butty we are having the same problem with ds 9 he is just like your daughter a angel at school but a nightmare at home. The conner's outcome was just the same as your dd,no problems at school only a few things but he scored quite highly with the one at home. My ds has got dsypraxia and the consultant said last week that ds does have autistic tendencies but he would commit either way yet! He wants to see how ds gets on with his anixity classes that he is starting tomorrow. I know just how you feel when you think somethings sorted then it all comes crashing down, you feel no-one whats to help.

Hi Butty. Sorry about the outcome of the assessment. Thought this might help.

When DS J (now nearly 7) was first assessed, my concern was ADHD. The psych spent most of our initial appointment talking to DH and myself and only about twenty minutes observing J, during which time J behaved quite well (it's all relative) because of the interesting toys in the consulting room. The psych then went on to observe J in school and like your DD he was a little darling. There was no home assessment and no form-filling, either by me or school. The conclusion was that he 'doesn't have ADHD because in order to dx the behaviour has to be present in ALL environments'.

J's behaviour worsened over the next few months and we called for him to be reassessed. This time he was seen by a different psych who, from our information alone, felt that J had either ADHD or ASD. She went on to do a full assessment (we're at the end right now and awaiting final dx) and it looks as though the outcome will be AS or HFA.

My point is that there are many similarities between AS and ADHD - in fact many children are dx'd as having ADHD initially then rediagnosed as AS later. It's possible that your 'team' have been focussing solely on the possibility of ADHD, as did our first psych, and have failed to see the wood for the trees, so to speak, and not considered that she might have AS. It's very common for AS children to exhibit the angel/demon dual-personality behaviour, so it's not unusual for children to be perfect in school because the environment suits them.

Don't give up. You say that she's 'the same everywhere except school' so you can use evidence from other sources to prove your point. Keep going and you'll get a dx in the end.

my youngest is 6...and seems like my eldest...diagnosed first with ADHD at 7 then aspergers at 9....

quite 'common' for a child to 'manage' at school till about 6/7...then they start to 'drown' in all the 'social' situations...that when they were 4 or 5 they were excused for...you know blurting out...wriggling around in assembly/circle time etc...bombing around the playground -flitting from one frienship to another etc..... then suddenly at about 6/7...the expectations change....

no longer is it 'cute' to behave this way...the other kids seem to 'grow up' and develop friendships...get invites to parties etc...the other kids learn to not blurt out inappropriately...and the other kids learn to sit still in assembly (cos they don't want a detention'.....

sometimes i liken my son's diffiuculties as seeming as if they have 'NO common Sense'....they are seem to not be able to predict what will be the conequence.....and don't respond to the 'punismhent' that you'd expect a child to.

but my elder 2 son's didn't (and i am sure my 3rd is the same)

By 7...they had obvious problems in school.... yet they are so achademically able that it was a bloody slog to get any recognition...as they have an 'uneven range of abilities'...meaning that for example my 11 yr old is +16 for reading...spelling and computers....but age 7 for handwriting......and my 8 yr old is 12+ for maths...but assessed at approx age 4/5 for emotional behaviour (so still has full blown tantrums in town etc)

And the other favourite explanation is ATTENTION SEEKING ....GRHHHH!!!! That REALLY pisses me off!!!!

One 'sign' i believe you can see in a child that TRULY is not 'DELIBERATELY' being bloody awkward...and is NOT ATTENTION SEEKING -but rather simply CANNOT conform.... is when like my youngest....

THE NEED TO DO something is SO great...that he does not even think of the CONSEQUENCE.... so for eg... he will be told 100 times NOT to play with the mud at school...and they cannot understand it when he carries on.... despte being kept in at a playtime...he will go straight back out the next day and do the same thing.....

now a 'naughty' child would i believe get fed up of the punishment eventually...and may then go on to a new 'naughty behaviour'....

but not my alex.... in this case he loves the feel of the mud.... an dit doesn't matter to him how many times he is told or punished...he carries on

thanks guys,
Chloe has no meaning of the word concequences at all. She will persistently carry on regardless.
No punishment works.
I have tried everything!!!!!!!!!!!!! I am at my witts end!!
Karenthirl, i asked the doc yesterday to get other people that know her involved as they see what she is like all the time, but he said that it can only be the home and school!!!!!!!!
I mentioned about social services referring for behaviour and violence program and my homestart support worker being involved as all proffessionals but apparently they don't count although they see her for the jeckel and hyde monstor that i do and they do their very best to help.
they can't even talk to chloe as she totally disregards and disobeys what ever suggested or asked.
They have seen her violent outburts and have said that they could not cope with what i do.
I'm just wondering if their is any one else i can see regarding their ignorance to the specialists involved???
I truly believe that chloe has a serious problem regarding her mental state of mind, and i will be damned if the so called specialists can tell me otherwise.
i am so frightened that she will get so out of control because of no help from the appropriate people, and what do you do from their.
She needs help, god only knows how she feels or if she even comprhends what she is like??
My poor little girl!! I love her so much, its just hard to love someone and show it when they affect your everyday life!!
Butty.xxx

The "It's just attention-seeking" comments really make me laugh. If my two boys are doing something they feel they have to do they don't even seem to notice whether anyone else is watching or listening.

I'm so sorry you didn't get the answers and support you needed, Butty.

So sorry Butty.

With DS (now 5) we were told the same thing - that the paed couldn't give a diagnosis of ADHD as his behaviour was different at school compared to home. He was hard work at home but it was at school that there were real problems and in the end it got so bad I had to take him out of school completely.

TBH at the time I didn't feel that he had ADHD anyway so I was happy with this result - it was the school that was pushing for an ADHD diagnosis.

Over the past year though its become more and more obvious to me and DH that DS does seem to think and behave differently to most children his age. Like Mrs Forgetmenotful says he just seems to have no common sense and often appears to be unable to comform rather than just being naughty.

He's doing much better now both at home and at his new school which he started in sept. However I still feel that he has too many ADHD and AS traits for the troubles of the last year to be 'just a phase'.

We have an appointment with the paed on monday morning to discuss Nicks progress and I'm going to talk with him about my concerns and ask him to do another assessment.

It appears to me from what you are all saying that we have had/still having problems with getting a DX and being heard.
I wonder how many parents across britain are tearing their hair out because of the criteria for DX???
i totally agree with all of you, chloe has no common sense and nor does she appear to be able to conform, that is apart from school!!!!!!
I think that something needs to be changed somewhere in the criteria for DX'ing things such as these.
It makes me really mad that some parents get their kids DX with ADHD etc... and really the fault is with the parents, not doing what they should be, looking for an easy answer, and yet when it comes down to yhe nitty gritty, we get know where!!!!!
i think if i make things up then maybe i will be heard!!!!!!
But there is nothing i can make up far from what the truth already is!!!
Some thing needs to be done.!!!
Butty.xxx

i would like to thank you all for your support over the past few day's. I now know that i am not the only one who has been failed by criteria etc...
I just hope that these matters can be resolved in the near future for myself and anyone else going through the same thing.
I feel a little more relaxed at the mo, but my patience does seem to wear very thin at times.
You have all given an insight as to what it is like and some very valuble resources.
Butty.xxx

butty i feel the same as you.

In april of this year DS was seen by 2 child psychologists who both said AS/ASD.
They have referred him to the CDC to be thoroughly asessed and it is now almost October and still nothing apart from a phone call from them last week to say "we believe ds was self harming himself back in feb- is he still doing the same?" when i said it is an ongoing thing- headbanging puching himself in the head with various objects scratching himself, they said"but is he cutting himself?" isaid not that im aware of.
"oh right he wouldnt be classed as an emergency then"! WHAT
it appears that what ds is doing is not "severe" enough to warrant an early asessment. depsite the fact that he has now been seen 8 times by the psychologists and they have carried the psychometric testing out to try and speed the diagnosis along but no nothing. NIL.
ive even had to take him out of school on more that one occasion this year because he gets so depressed and bullied, so i can really sympathise with u butty.

Incidently ds is almost 9 and i had him to the paediatrician when he was 2/3 as i was convinced he had some sort of disorder but was told that i was being an over-anxious mum.
its really sad in this country re asessment that you have to wait such a long time and you have all these different emotions to deal with.

Keep posting on here butty its the only thing that gets me through it

In a strange way I'm glad that ds1 was so late to talk. It was the only thing that got him into 'the system' at such an early age and got him a dx while still a pre-schooler. If his language had developed on time then I imagine we'd be in the same situation as a lot of other parents. Ds1 thrives on the routine at school and does well in class. I think it would've been difficult for the staff to believe that he had any problems at all.

We're still in limbo with ds2. The Paed has given a verbal provisional dx of AS/ASD. He also agreed (after a full assessment) that ds2 has all the traits of ASD. The other professionals who work with ds2 are all convinced that he is autistic and can't believe the Paed won't make it official. The Paed's personal policy is to wait until a child is 3 before even considering an official dx. Arrgghh!

COPPERTOP- that is so true about the speech delay 'helping'.... my biggest regret so far was at leigh's 3yr check he had speec probs...and i worked so hard to help him so that he didn't have to go for SALT (as the health visitor had said if he still had probs at 4 she would refer him.....)...so at the time i panicked...thinking 'my child is fine...there's nothing WRONG...I can FIX this'....and sure enough i did help his speech.....but if only i'd known then what i know know...that being that a SALT is NOT only to 'get a child talking'!!!!!

If he'd been referred...maybe some of his other pre-school 'oddities' may have been picked up...

Hi all, i'm back online again!!!
I know i'm not the only one, dylan my nearly 3 yr old son has had problems since i can remember.
I first talked to the HV when he was 5 months old, then again at 12 months old, then again at 14 months old to be told ahain and again that he was just lazy!!!
Eventually i took him to see the GP at 17 months old who without me even explaining about the way dylan is, immediately rung the pead at the hospital for an urgent appointment.
Dylan was only just sitting unsupported, his crawl was slow and very unsteady, hence all the falling he did, i mean like evry 2 seconds, he had no babble or communication skills what so ever.
Once i had the referal they were really good about every thing.
Dylan has low tone cp and global development delay as well as hypotonia.
We are awaiting an MRI scan and a skin biopsy for poss mosaicism.
He had a statement put in place in may of last year and attends the local special needs school in the nursery department.
His statement has classed him as severe learning and physical disabilities.
I suppose the point i am making is that i had to push for dylan, even when all the problems were noticable from a baby.
I have got rid of the HV who said that he was just lazy!!!!!
But he's getting the coreect support now, and yet i have to battle with chloe for her DX.
The system reallly does suck.!!!
Butty.xxx

Butty,
I'm sorry for all the problems you have had re. diagnosis. Mrs Forgetmenotful and others are absolutely right that children can conform at school but not and home and still have adhd. Adhd is a tricky diagnosis in some respects because it is made on the basis of observable behaviours and does not describe any specific definitive illness or brain structure/function problem. According to the criteria the diagnosis can only be made if it is observable in more than one setting and school and home are the two settings usually used. Some diagnostic centres are trying to be more realistic about attention difficulties and assess attention problems using more objective tests, e.g. testing the child's ability to inhibit impulsive behaviour using computer tests. These can be useful because they allow the psychologist to compare your child's reactions and behaviour against the norm for their age, irrespective of environment. It allows the psych to be more precise about the root causes of the child's behaviour.
Did your child have this kind of testing, i.e. formal tests of attention and impulsivity?

DOBBIN...i saw one of those tests on TV and thought what a great idea they were....i often feel that too much is based on 'hearsay' ....because the nature of these neurological conditions is that there aren't 'simple' blood tests etc to indicate when a 'condition' is present..

the test i saw on tv was something like the child had to listen to a tape and indicate certain noises etc as he heard them...but ofcourse to test his distractability- there wre loads of other noises to interfere.

I think JENK1 has herself done some test or other....or maybe i imagined that!!!!!

(c'mon jenk...tell me i'm not imagining things!!!)

I'm not sure where you had your assessment. I assume it was at your local hospital. If you are not happy with their findings, there are specialist NHS teams who are able to carry out more comprehensive assessments and, where there are problems of different behaviours in different settings, they can carry out school visits. Experienced practitioners can usually spot adhd even in a structured environment. If your dd can behave, for now, at school then it is possible to use that information to guide how you could structure homelife for her. Ideally your local paed team should provide on-going behavioural support for managing her at home. However, that is only really helpful if you think they hve achieved a good understanding of her in the first place. When you go for your next assessment, you might want to consider asking for a second opinion.

Hi mrs f only just seen your post!

Yes my ds had a psychometric test done in july over 2 afternoons lasting 2 and a half hours each time.

they tested him for all sorts, his concentration levels,numeracy,speech,writing to name a few.
they even had him building things from lego to observe his obsessive tendencies(he wouldnt go home till he had made his lego totally symmetrical!)
he had to listen to certain noises-eg animals and tell them what they were and at the end of it we got a very detailed report into his intellectual ability which is ds case he is in the very superior range which sometimes is the case with autism-they are too bored and get frustrated with school and need more stimulation.

At the end of his statement it says in their opinion(psychologists} ds is on the autistic spectrum but we STILL have to wait for him to be seen b the paediatrician for a written daignosis.

Also just to add that me,dh and ds have all had counselling from the child psychs on how to manage his behaviour and also where we have beeb going wrong in our disciplining him and it has been brilliant it has totally changed our home into a calm one-apart from meltdowns!, but i hasten to add the child psychs only did this because there is a long waiting list to see the paediatrician so i dont know if this is the case in your are butty but try going back to your gp and ask for a referral to a child psychologist if you havent already done so

thanks...i think what you had is great...it's all well and good the powers that be saying no to a diagnosis...but that leaves people like us 'stranded' whilst we wait for things to get worse...so you having that social services input sounds great too!

Hi, sorry could'nt respond last night, powers beyond my control were calling that means CHLOE!!!!!!
I have been on the waiting list for the child psych for 18 months and still no joy.
I am waiting for a phone call from the pead that sore us at the appointment as he was going to have a word with the specialist consultant at the ADHD clinic regarding my comments about the whole situation as at the end of the appointment i was in tears and i said that you can't just wipe out the highest scores possible at home for the conners report just because of a school report.
I made it clear that there are major problems and that i wanted a second opinion.
He said that he will call me today, fingers crossed that he does!!!!!
If i get no joy i am going to ask about the tests that you have mentioned as it sounds far more realistic than some one elses word on a questionairre of whom dont have to live with the child and others involved to see what she is really like.
When i asked how often are the children good at school who have ADHD, he stated very few that slip the net, i stated that chloe could be one of these few, but he said that it was highly unlikely!!!!!!!!!!!
Yeah RIGHT, i imagined the conners report scores did i?????
I am gonna keep on persisting know matter how tough it gets.
And mrsforgetmenotful, the social services are proving to be a real help and support and i think i will get them to get involved with the peads etc.. to give their side of how they see chloe. That should be very interesting!!!!!
Butty.xxxx

God Damn, he was meant to ring me before 12 today!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
I am getting very inpatient, i hate having to wait!!!!!!!!!!!!!!!!!
Sorry, just need to calm down before i get in an anxious mess!!!!!!!
Butty.xxx

Aww butty 18 months for a child psychologist

Do what i do-get on the phone in tears and demand things and KEEP pestering. Its the only way i got ds to see the child psychologist and they have now seen him 8 times since april-not due to me crying every time though!

Thnking of you

HUGS