Anyone been though the process of ADHD diagnosis? Experience/advice requested!

[ICanSeeThroughtYourSmile]

DS2 age 8 is being seen by the Camhs psychiatrist next week. The appointment is described as Stage 2 in the assessment. Stage 1 was meeting with us a couple of times and observing DS once at school.

I wonder if you could tell me what happened when your DC saw a psychiatrist? Was it on their own, or with you? What did you say to your DC beforehand - DS has no idea he is being assessed at the moment .

We have no idea what it is going to be like, or even how long it'll take. Nor do we know whether we will get a diagnosis at all - this week or ever.

I'd really appreciate anyone taking the time to tell me what happened to them. I'm a jangle of nerves about it at the moment - both wishing for a diagnosis ('it's not just us being bad parents/imagining it') versus not wanting a formal label ('DS is somehow damaged ' iyswim?).

Thanking you in advance

All our screening was done by mental health nurses and we only saw the psychiatrist for final diagnosis and discussion of treatment options. We've seen him every 3-4 months ever since (for 4 years, now) as DS1's medication requires regular monitoring and review.

Just to add that DS1 didn't really understand what was going on, at that point - he has ASD and was still quite severely language disordered at the time (largely resolved with ADHD medication, as it turned out).

Thank you ouryve. We are in the E Mids, and I wonder if the process varies depending on where you are? Unless we are seeing the psychiatrist for final diagnosis afterall? As I said, it wasn't clear from the appointment letter.

Did your DS see the pysch on his own, or did you accompany him because of his language delays? Did you tell him what his diagnoses were? How did he respond if so?

Glad to hear that things have improved since he got medication. Strange that his language improved - did you put that down to less disorder attention and concentration from the meds?

Thanks for your experience ouryve. I'd love to hear from others too

The process does tend to vary between areas, in its fine detail.

Our psychiatrist always sees us all together. He's only 10 and if it was left down to him, all he'd communicate is that he doesn't like the waiting room, downstairs (he hates it, in fact - we end up waiting in the entrance lobby)

He's been learning about his diagnoses, very slowly, over the years. He's just starting at a special school and is picking up that a lot of the boys there are "quirky" like he is, but all very different. His own brother also has ASD and is more severely affected in more obvious ways, so that provides another frame of reference for him.

Oh - and the language thing - I think that came along with improved executive functioning. He always had the words, but couldn't use them to communicate effectively. Being able to actually say I'm tired or my nose is tickling was something he'd never been able to manage, before.

Of course, he mithers for England, now.

Hi, my DD was diagnosed this year, at age 10, with ADHD (and autistics traits). I think the process does seem to vary a lot depending on which part of the country you are in.

The way it worked for us was that school first suggested we have her assessed last autumn (even though we had considered it for a while). We went to the GP and got a referral to the community paediatrician at a family and child centre. We had the option of that or CAHMS, but where we live CAHMS is completely underfunded and has long waiting lists, and the school (and the GP) told us to go through the paed.

We had two meetings where DD came with us. She didn't really know why, we tried to explain but not very successfully, and didn't mention ADHD. She didn't really want to go and didn't really co-operate, but I think her being there gave the paed a good idea of what she can be like, if that makes sense!

After the first meeting questionnaires were sent out to school and us. These were questionnaires for ADHD, ASD and Aspergers (I think the ADHD one was Vanderbilt, the others slip my mind). Paed also had several long chats with the SENCO at school. School provided very long reports about DD, which we were allowed to read when we went for the next appointment.

At the second appointment the diagnosis was given. There was pretty much complete overlap between our responses to the questionnaires and the schools, and the paed saw her as a 'classic' case.

Since then we have had one shortish meeting and a telephone call with the paed. DD was not at this meeting, and the main topic was medication and behaviour management.

We have since told DD. She was initially was a bit freaked out by it all, but since has been overall positive, and has been flicking through a book we bought called: 'The survival guide for kids with ADD or ADHD'. I don't really know how much she understands, it is impossible to have a coherent conversation with her as her thoughts jump all the time, and, although she talks pretty much all the time, her speech is not great and she often struggles to find words.

We are considering trying medication. She told her younger brother, and his response was: 'what, you mean that she can't help hitting me? oh no, does that mean she will never stop doing it and not even get into trouble?'

I can completely understand your ambivalence - I felt exactly the same, and I am still feeling a bit confused about it all. But I do think that for DD it will make life easier and better in the longer run, and maybe for us too. I think my own brother probably had similar issues and he suffered throughout school with very little support, and I want her to have an easier time than he did.

For her school at the moment the diagnosis will make no difference, she was already on SA+ and has been getting all the support they would offer a child with ADHD for the past year or so. But it could make a big difference when she moves to secondary school.

We want to have her assessed by an occupational therapist (to assess sensory issues), as this was recommended, but will probably do it privately as the waiting lists are very long here. Apparently it costs about £500.

I hope this helps. Good luck and be kind to yourselves.

We were already under care if a CAMHS behaviourist and DS had a diagnosis of autism. Basically we filled out a connor's questionnaire. School (special school) were asked to but refused to as they were adamant he was not ADHD and that his behaviour was down to autism.

Fortunately our behaviourist had personal experience of children with ADHD and autism so she ignored the school and referred him to the psychiatrist anyway.

Basically within 5 minutes of being in the psychiatrist's office and DS playing very loudly and not listening, he announced that "if he does not have ADHD than I'm a banana".

I would say that my experience shows that the opinion of professionals can differ a lot and it is often just a case of getting your child in front of the right expert. My DS's school should have known full well he had ADHD given that they taught ADHD kids every day. Apparently when children have ADHD and a co morbid condition like autism it is very common for one condition to be missed in the diagnosis. After the school experience he was medicated and I then withdrew him from the school and sent him to mainstream with full time TA where he is thriving.

If you feel your child has ADHD my advice would be to stand your ground and persist until you get them fully evaluated and don't be afraid to ask for second opinions.

Just to add both me and DS were present in the psychiatrist's office. I can see what you mean about a label but getting that label will mean it is far easier to get the help he may need. Also re meds, I would say don't be afraid to try them but alongside behavioural strategies. I guess it depends on the severity of the ADHD though. In my DS's case he has moderate to severe combined type and without meds he can not function but with them it is as if a switch has been flicked and he suddenly turns into a well behaved child

Thank you judogonzales and Henryhsmum - really grateful you took the time to post all that! You have given me food for thought in lots of ways. ADHD seems to be such a strange one - it's a condition which seems to have a real stigma .
The amount of times I've been told 'he wouldn't do that if he was my child - what he needs is a good hard smack' - it is so frustrating. I am sure DS doesn't want to be as hard work as he is.
Appointment is at the end of the week - wish us luck!

ICanSee - here's wishing you luck! We have just picked up a prescription for medikinet XL for our DD, she will be trying them for a few weeks to see how it goes.

I think people just don't really understand ADHD, I don't think I did until I had my DD. People just assume ADHD = naughty, rude, violent, undisciplined wild child, and ignore the enormous suffering and heartache that is often going on underneath. My DD has an enormous heart, and tries so very hard to be good, but it just doesn't come easily to her.

Our experience was very similar to judogonzales.

I knew there was something wrong when she was 3. She's our 5th child and we already have 1 DS with ADHD and dyspraxia, and another with dyspraxia and sensory issues. Since her dx we have also found out that 2 of our adult Dc have been dx with dyslexia as well, since leaving home.

We were originally referred when DD was 5 and the first community paed we saw was quite dismissive and said there was nothing wrong with her. Considering that every group or activity I took her to I got complaints about her behaviour (usually from the 3rd session) I went back to the school with my concerns.

We were referred again when she was 6 and this time saw a paed with an interest in ADHD. She said she was a classic case. She started on medikinet this year and we've been trying to fine-tune the dose for the last few months. It makes a huge difference at school.

We've seen the paed as a family. When DS was dx - many years ago - he was seen on his own by a psychiatrist and a psychologist. We didn't tell him what was wrong with him. The nurse helpfully told him when he was about 11. (so he then used it as an excuse for bad behaviour, which was why we hadn't told him).

Our experience was also very similar to judogonzales. For the meeting where he got the diagnosis, the Dr had a chat with us all first then DS went out into the seating area (and played on the Wii) while the Dr and I had a chat about all the various assessments / observations that had come back in.

We've still not used the phrase adhd with DS (7), but have had chats about how he struggles with concentration in class, etc, and that's what the visits to the children's centre have been about. He's recently started meds, which I think are helping, but the diagnosis itself has helped his teacher figure out what helps him best in class and that's been really useful.

Thanks again - this is really helping me get an idea of what might happen on Friday.
I hear that you are positive about your experiences, which is great. I am so undecided what I want the outcome to be - if in fact there is an outcome from Friday - this whole thing seems to take so long.
DS has actually been quite a bit calmer in recent weeks, but how do I know if it is just a good patch or a corner turned? Just want to know where we stand now, I think.

Hope it all goes well today.

Oh, thank you TwoLeftSocks. Lovely to know you were thinking of us.
However, the appointment didn't happen! I got phoned on Thursday by Camhs and they have had to cancel due to 'staffing issues'. I will apparently get a new date 'for the near future' in a letter next week. Argh! Thankfully, I was intending to tell DS the night before, so they cancelled before I had told him. Otherwise he could have been fretting for ages as we don't know what is going to happen at the appointment so can't really prepare him properly.
So, the waiting continues, again. Sigh and Argh!

How annoying! DS was poorly and we had to cancel two appointments, so had a two month delay before we had one of our meetings. Didn't fare well for my nerves. Take it easy and don't stress it while you're waiting for the next appt :)

ICanSee- that is so frustrating! Good thing you didn't tell your DS.

I hope you don't have to wait too long. If the new appointment is very far away, would it be worthwhile phoning them up and pestering a bit? Sometimes they have cancelations and can slot you in at shorter notice.

We started DD's medication this weekend. a small dose, supposed to last about 6 hours. OMG. Maybe DH and I are imagining it, and maybe it is a placebo effect, but the change was massive. both days started at 6am with her chaos, by 8.30 on saturday I already felt so exhausted as if I had already been through the entire day. we gave her the medicine. At 9 we were having a chat. A proper conversation. she spoke, i listened. i spoke, she listened. she didn't get upset.

she played relatively nicely with DS. she just seemed calmer. Still very active/hyper and bouncy, but with a bit more inner peace and without the manicness, if that makes sense. the house felt less tense.

so far the medicine seem to just be bringing out all the lovely parts of her! no side effects yet, yes, she had trouble falling asleep last night, but no more than normal nights. She was emotional and back to her old self when the medication wore off, but overall she has had two very good days. Let's see how school goes tomorrow!

Judogonzalez - early days, but that sounds amazing! That is what I want - not to lose my DS but to get more of him not at one hundred miles an hour...

I am crossing my fingers tightly for you that this is something that works for your family, but what a great start . Good luck with school tomorrow. Are you going to tell them or just see if they notice the difference?

As for us, yes, I might pester. I'm not sure about taking an appointment at short notice, as I want us and DS to get the most out it and we might not if it is a rush job iyswim?

I'll keep you updated, anyhow. Thanks so much for your support.

Hi ICanSee, I have just seen your thread and am hoping all works well for you and your DS. Our DS was diagnosed just after starting secondary school - a challenging time for any child, let alone one just coming to terms with adhd. I wish we had known sooner because we have learned a lot over the past year or so and grown as parents and as a family in order to better support him. While we work through the mostly self-imposed expectations of school/achievement/etc, our main goal has become making sure he grows up with healthy attitudes about himself and life. His adhd has just reminded us how important that really is. Good news - he is growing into a lovely teen and has helped me to grow into a more patient (and mature) parent. (Positive Step Forward: Studied for his exams last week like mad and with incredible endurance/focus, Ongoing Challenge: Had to borrow most of the notes to study from as his were fairly non-existent). Bottom line - diagnosis helped us move toward positive action. Here are two links that might help - (a) a link about ensuring the best adhd diagnosis/treatment www.additudemag.com/adhd/article/5769.html and (b) a PDF about 'Magnificently Minded Children' - connects.leadpages.net/beautiful-minds-3/
All the best!!

Thanks again all
We got our reapppintment letter - our new appointment is on Tuesday.
Any last minute tips about how to get the best out of it? It is with a psychiatrist and Camhs specialist nurse. Would still like to know if DS will be taken off for tests, or if it will be a 'let's all chat together' kind of appointment.
I intend to tell DS about it tonight, without using any specific words.
Wish us luck!

That's nice and quick!

I think my top tip would be to just ask any questions you have, including what happens next in the whole process.

Let your DS know that has any questions then he's perfectly allowed to ask then, or later on if he thinks of something afterwards.

I should think if they did want to do any additional tests, they'd probably set another appointment for that. You could always give them a quick call tomorrow though, just so you feel better prepared.

Hope it goes well!

Well, we're back (DS is currently on the trampoline, we're not bringing him back to school today) and it felt like the meeting went very quickly.

We were told that DS meets the criteria for a diagnosis, and in fact the meeting was for the psychiatrist to talk to us about medication. It was a bit of a shock tbh as we were expecting more talking about how things, mainly focusing on DS's input/point of view.

However, they didn't ask him much, and seemed mainly concerned with telling us that as we were doing all we can (we have never been offered parenting courses or anything like that as they have said we are already doing everything they normally advise), therefore the only available thing they had to offer was medication.

So, um, we are now at home. DS knows that he has this thing called adhd, and we need to talk together about whether we want him to try medication or not. Feel a bit numb I think. DS is somewhat excited, hence no school this afternoon. I might post again later when I've got my head round things a little. Thanks again for your support. It is good to feel we aren't alone.

Hi Ican. Glad you got your diagnosis. Sometimes that is the hardest part! We had a joint appointment with CAMHS & a psychiatrist and hadn't known what to expect. We sat and chatted about DS (6) and how he is in different situations etc and the psychiatrist said it was clear we were going to end up with a diagnosis of ADHD but he needed the school report first.

He told us that he would be looking to prescribe at our next appointment (not yet been scheduled as he hasn't written up his notes yet - don't get me started!!). He also said that although there is a stigma atttached to meds, if we would give him medication for an infection what was the difference. I'm still not convince but a friend said that worse case medication isn't right for us and we can choose to stop it. On the other hand, it could be the best thing we could do for DS. So having decided to try medicating him, we just need to keep chasing our folllow up appointment...

It's a lot to take in and not helped by peoples reactions. I was telling my brother about the appointment and how it went and his opinion is that DS is a boy and that's what they are like. He thinks I am being precious about DS. Not the only reaction we've had like that and it does make you feel alone which is why I love Mumsnet so much - nice to get support & feel normal.

Good luck with your journey!

Ican, that was fast! I am sure that this is for the best for you and your DS, but give yourself time to let it sink in. I am not surprised that you are a bit numb, even when the diagnosis does not come as a surprise it takes time to sink it. I was filling in a form the other day for DD to take part in something, and it had a category asking about special needs and I ticked the 'no' box without thinking, and then found myself in tears when I looked again and realised that I still couldn't quite bring myself to tick the other box, which is really pathetic of me.

We are into week two of medication. DH is happy with the results: DD is definitely happier, and her brother is MUCH happier as she has not been violent to him at all. She seems happier to go to school and tells me she has good days. The SENCO is happy as feedback from teachers is positive.

I still feel a bit ambivalent, but I am a bit confused as to why. One of the side-effects, which is loss of appetite, concerns me a lot: DD is not eating anything at lunchtime, and I am worried about that. She is small and slight and very sporty, and I feel she needs to eat. Then at the weekend I had a horrible fall-out with my closest friend locally, who basically just can't accept that I am medicating my child. I don't have the energy to explain things again to her: she knows my children well and knows exactly what the situation is. But my family and old friends all live very far away and I could have really done with somebody to hold my hand and just accept our decision.

Anyway, sorry to hijack this thread: I am genuinely pleased to hear that things are moving ahead for you and your DS.

Thanks both. Just a quick reply as I am shattered. I think the official diagnosis has taken us by surprise a bit. DS was referred over a year ago, but things have moved so glacially slowly with Camhs it was a shock to get the diagnosis today when we weren't expecting it.

I get what you are saying about medication. It does feel wrong. BUT, if it can help DS lead a more fulfilling life, and smooth out some of the hard things, then it has to be worth a try? I also worry about effects on his height and weight (all the constant moving means he doesn't eat much in one go and burns off every calorie!) and that DS will somehow be dulled by medication, but I guess we won't know until we try, and it isn't unreversible.

I have no idea if we will tell people about it - I would rather people accepted DS for who he is than just see him as a boy with a diagnosis (especially as people do like to think ADHD is socially constructed rather than neurological). My family and friends are all of the 'he's just a boyish boy' mentality - they do know what he is like, but I don't think anyone can understand the relentlessness of living with a child like DS unless they do it 24/7, not just on holidays. I think they think he just need a firm hand >

Hmm, lots to think about, but for another day. Thank you again for sharing your experiences. It is good to have some fellow travellers on this tricky path .