Daphne Keen

[Leandersaturn]

Hello ... My daughter is having some problems, currently suspended from school until we see DK next week. Just found out insurance won't cover her so looks like we will be paying the £800 fee ourselves and I am starting to question whether we are going down the correct route. I know she has an outstanding reputation and whilst my daughter definitely has some ASD tendencies I still question whether the problems could be psychological/emotional and/or she might grow out of them. I have heard that DK does see things through the ASD point of view and whilst we want a diagnosis if there is something wrong, I don't want her labelled for the rest of her life if it is due to other factors eg environmental. Has anyone ever heard of DK not giving an ASD diagnosis?

Thanks in advance

[bjkmummy]

yes 2boys son saw her about a week ago and didn't come away with an asd dx. my dd saw her last year and we did get a asd dx. the truth is she wont dx something that is not there and there are so many cross overs with asd that DK will look beyond just asd if there are other dx that fit rather than asd

[Leandersaturn]

Thank you so much for your reply. This has really put my mind at rest. Very worrying time for us all. I hope your children are doing okay?

[2boysnamedR]

I don't her her report yet but it seems my seven year old hasn't got asd - she has some questionairs for school but she told me she thinks he's in the Gray area but missing key asd traits.

I have thought he had asd for 5.5 years ( he's seven). She asked him questions and me and honestly some traits are just not there. I needed her to tell me what's significant. Her report will sum up what he does have, but I can't comment on that yet.

I got the impression she can make her mind up there and then.

I also saw a well recommended EP today who told me she is the person to ask. My eldest boy school has told me out if the blue that the school think he's aspergers. The EP urged me to go back to DK for him.

I never wanted a asd dx ( because I'm being honest here I just want a boring average child who is no trouble in any way). I did 99.5% expect one.

So I would say that a lot of people get tha asd dx because you have to pretty certain to pay out £760, not because its what she diagnoses iykwim?

[blossbloss]

Both of my children have seen Daphne Keen. One came away with an ADD and ASD diagnosis from one appointment.

The other is more complex and we have been back and forth over the last 18 months with Dr Keen and her colleagues to try to get the correct diagnosis for him. So far he has seen an EP to rule out Attachment Disorder, received an ADHD diagnosis and been prescribed medication by Dr Keen. After another year and continuing problems, he is now due to have an ADOS with two of her SALT colleagues and then we will have another review with Dr Keen. He may or may not get an ASD/PDA diagnosis at that point. Dr Keen has also consulted his school on several occasions, our local NHS CAMHS and Paediatrician services and a local charity we are working with.

In my experience she will not diagnose ASD unless she is absolutely certain it is the correct diagnosis.

[Leandersaturn]

Thanks for your replies. Tbh I think I am in denial and she will come away with a diagnosis. It is all starting to hit home as I thought it was just her/something she would grow out of but she has so many of the traits. What I don't understand is why it has escalated so quickly. She has had a few incidents at school this year, then all of a sudden it's MAJOR incidents 7 days in a row and she is suspended. She did have a Strep A infection but that's cleared up now.

BlossBloss it must be hard for you still with no diagnosis. Are you having to pay for all of this yourself?

[2boysnamedR]

My eldest is 11 and to be fair this has been escalating for a while but his threat of suspension has come out if nowhere.

I think it was sats stress and worry about secondary and his continued bullying. You can handle so much before you snap. I'm still realing about my eldest. I'm very head in the sand

[blossbloss]

Yes sadly we are self funding it all. We have saved the DLA for a while to fund it though which makes it somewhat easier.

It is hard without a diagnosis but luckily he is in a wonderful school where a diagnosis isn't needed. Given his sisters diagnosis we are confident he is somewhere on the spectrum which stops the endless soul searching about whether we are worrying unnecessarily. The local charity we are working with has made a huge difference too and helped keep us sane.

Dr Keen says she sees a lot of children like this who don't quite fit one or other diagnosis and this is something polter raised recently too. Dr Keen's perspective is that it's about getting the right help for them rather than obsessing about the diagnosis and she is right. However in the "real" world, DS cannot access NHS services he needs without a diagnosis!

For what's it's worth, DS unravelled with amazing speed in year 2. We went from a child we had no concerns about, to an ADHD diagnosis and the question of autism being raised by Dr Keen to complete school refusal and suicidal thoughts self harm etc in 18 months. Fortunately with the right support in place he is making huge improvements at the moment and there is light at the end of the tunnel once again.

[Leandersaturn]

Thanks ... Today she has had another meltdown at her grandparents (basically trashed the place like at school) ... As usual when she feels she can't do something perfectly or feels inferior etc but response is completely disproportionate (she was told to be careful because she knocked a plant over). Not sure why she feels like she has done wrong with small/simple adult direction. At school the last outburst was because she couldn't draw a sunflower (no social cue).

Over the last few days she has also started behaving manically eg she will have a tantrum and then go "HA HA HA ONLY JOKING" and literally be jumping from one emotion to the next. I thought it was PDA but now I am considering Tourette's/bipolar.

[ouryve]

How old is she? Hormones can throw a massive spanner in the works in girls who were previously doing OK. (I was the meekest child ever - mute in some circumstances and a bully magnet - I snapped and thumped someone 2 days before my first period started!)

[Leandersaturn]

Haha that's brilliant ... Wish I could blame hormones, she's a few weeks away from turning 6.

[ouryve]

So year 1, then? That's hard for some kids after the relative informality of reception. DS1 spent most of year 1 part time.

[Leandersaturn]

Thanks Ouryve, does she have a diagnosis? I'm confused by the ASD thing as today it was only about being told to be careful and her presumably feeling bad/guilty for an accident ... She adores her grandparents and has never done this before in front of them. At school the last time it had no social involvement she just got frustrated with herself. And at other times in the same situations she would just deal with it/say "okay". I just can't understand where the intense anger and frustration comes from and why in some cases but not others and why it has suddenly escalated so badly.

Just learnt the difference between tantrums and meltdowns. Hers are definitely the latter!

[ouryve]

He already had a diagnosis of ASD and was diagnosed with ADHD towards the end of year 1. Things started to improve once he was on appropriate medication for that and the school had put a lot of things in place to make the day more manageable for him - and then year 2 happened with a completely unsympathetic teacher who thought he should be fixed by strict discipline and everything was undone in an instant.

[Leandersaturn]

Awful. I'm not looking forward to battling with ignorant people like that.

[blossbloss]

Ah yesouryve.....That's been the story of DS's year 3 hence the severe decline in his mental health.

[Leandersaturn]

I was in hospital today, DH looking after me and DD at her grandparents. Spoke to her earlier and she was so happy having been to Pizza Hut and Toyrs R Us and almost seemed like her old self. Grandparents took her to doctors this evening and she had a meltdown. Throwing herself off the walls, saying she hated her Grandpa, trying to grab the doctor, broke her Grandma's necklace, climbing under the desk, tearing up papers, threw the prescriptions in the bin and basically wrecked the surgery. Her Grandma (who used to work with foster children) said it might have been because she was asked not to climb on the couch but in all the drama (took over an hour to get her out of there) she can't remember exactly and it felt like she 100% lost control and couldn't stop herself. She just kept saying "don't talk to me". We are so worried about her. Don't know where this has come from and seems no rhyme or reason as to what sets her off. Any ideas? Is this a normal level of ASD meltdown? We feel we are losing her and so helpless

[impulsiveboy]

I don't know as we are also pre dx. But just wanted to say how horrible and scary it must be for all of you. If you've been in hospital, could it be that she is particularly worried or stressed about that, to add to other issues?

[Leandersaturn]

Thank you ... She seemed fine all day so don't think she was worried about me particularly. When discussing it she said "so you just went to the hospital and then home for a nap and it wasn't too bad" and then started talking about something else.

[Leandersaturn]

Further information from GP.

There was a lot of debris after she left but no damage. She kept saying to her Grandad 'stop looking at me, you're making me really angry'. She did try and calm down when I said she could take the prescription if she calmed down, but then she immediately grabbed it and screwed it up and got very upset again. When her granddad picked her up, she was pulling at his mouth, which must have been quite painful, as she is quite strong. In the end it seemed better to let her try and calm down in the hallway but it took a while.

The redness on her toes does not look infected at present - I think it is mainly scar tissue so I only issued the prescription in case infection flares up when they would probably look weepy or have pus along the edge of the nail