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

I think I felt quite numb too - relieved in a way but also in shock a bit.

Focus on the positive, his has his diagnosis and that'll really help him, you and his teachers. A parent at school whose DS has autism was thrilled for us when I told her, which seemed very strange at the time, but then she pointed out that it really helps put the right support in place, for example each time the class move up a year, the teacher can hit the ground running and not spend quite so very long trying to figure out how to get the best out of your child.

We've still only told a very select few about DS's diagnosis, and even less about his meds. The thing is, you can choose who you tell and when. DH and I still haven't told out parents and only a few friends, not all of whom really get it. Some do though, and they've been real stars.

And you can also choose if and when you try your DS on meds, that's entirely up to you and your DS. It's up there as one of the biggest decisions you'll make for your DC, certainly one that I needed many G&Ts to help me through.

Just thought judogonzales, I asked the ADHD nurse about diet at our last appt, as DS is vegetarian (his choice) and one of the things she said was to keep things full-fat, like butter, milk, etc as they need the calories more than most kids. Don't know if that helps. The appetite loss was our biggest concern but thankfully hasn't been an issue, DS just struggles to drop off to sleep instead.

And sorry to hear about your fall-out. I hope your friend can get her head round it, or can at least keep it to herself.

I'm so gald I found this thread!!! Lots of the questions I was asking myself seem to be normal! Its good to know I'm not alone in how I'm thinking. Part of me is dreading medicating DS but part of me is looking forward to it as long as it still lets my DS through if you know what I mean!

Can I ask what side effects people have experienced & how quickly they were apparent?

The only side effect so far seems to be the sleep - DS is still awake now, but happily reading an Asterix book in bed. We think it's possibly the tablets but it could also be the light evenings or just habit after a series of weekends where he's been up later. Not completely sure yet.

Good evening, ladies! OK, so to start with some words of wisdom from my mum re. medication: I was on the phone to her, and told her that I was still struggling to justify giving them to my DD, and she said to me: 'The way I see it, if they could help DD, then you do not have to justify trying them, but you would have to justify not trying them'.

Maybe she has a good point.

About side-effects, Towicymru: loss of appetite, noticeable immediately. No interest in food at all until the meds had worn off, not even in her favourite snacks such as jam tarts or crisps. Slight headache for the first two days, but nothing since then.

Also, as Twoleftsocks mentions, the sleep! DD has just now fallen asleep, but I am in my her room with my laptop, as otherwise she really struggles to settle. But she has always been an absolutely terrible sleeper, so we have not really seen much change there. In fact, these past few days she seems to be sleeping better than before the meds as she seems a bit happier falling asleep.

Twoleft, thanks for mentioning the full-fat stuff, funnily enough earlier today I had a chat about exactly that with DH. We have had some very odd meals here recently: DD's breakfasts this week have included chicken and noodle soup, spaghetti with melted cheese and lots of pancakes. The lady who runs the afterschool club commented in amazement at how much a child as little as DD could eat after school..

I am sure my friend and I will get over this in time - she is a wonderful person, and very understanding, which is why I was so taken aback to have this reaction from her. Anyway, good luck to all of you.

Hello again
Good to see some useful conversations about medication, eating and sleeping. So much to think about!
Still undecided about what to do, who to tell, how we feel, but it feels lovely having you lot here with the same questions and concerns.
Definitely concerned about implications of medication on eating and sleeping and any side effects. And implications of telling people who then make judgements on DS or us.
I guess it's because we still aren't quite convinced that DS has ADHD - maybe we were just painting a 'worse case' to Camhs and were very convincing? He has been diagnosed as having problems in all three areas (I thought there were two - inattention and hyperactivity?), but for us he is still our very loud, exuberant, fidgety boy. It doesn't feel like we have child with a 'neurological disorder' iyswim?
Sorry, as you can see, my head is still all over the place!

I think everyone must worry about the side effects - DS had an ulcer at the end of last half term, just one ulcer inside his top gum, and I paniced (quietly, without him noticing) far, far more than it deserved as it was somewhere on the big long list of possibilities. It went the next day, and none since.

If it helps, to counter that as it were, his teacher once again told us today how he's writing etc so much more - I think she sees the effects far more than us as DS likes to have tablet-free non-school days.

The one bit I've really noticed at home is that it's made getting out the door in the morning soooo much less stressful. I only need to ask him to put his shoes on once now, and he does it! And he's actually happy to do short bits of homework now, and even read a Spot book to DS2 the other day.

Saying that, meds aren't for everyone, it's so down to your own feelings on it, and there's no rush if you're not sure. If the psychiatrist is wanting him to try them out, you totally can ask to hold off and try working with his behaviour etc.

I was thinking about what I found helpful when DS first got his diagnosis - the All Dogs Have ADHD book is nice (always used to say when DS was a baby that it was like dressing a puppy),

• being given a list of famous people with ADHD (or the traits of through history), and then watching Robin Williams ad-libbing in Good Morning Vietnam,
• quietly following, but not yet posting on a few facebook pages, ADHD Kids Care - Support Group For Parents, ADHD Stands for Adventurous, Determined, High Creativity, Dreamers, and Additude,
• the Additude website,
• for me, chatting with friends with children with various SENs. They totally know where my head's at, and know when to get the cake out too.

Sorry, I've rambled - DH keeps puting more beer in front of me.

Sorry - I lost track of this thread.

The all dogs have ADHD book is brilliant. Despite his dual diagnosis, DS1 identifies with that more than all cats have aspergers.

Regarding appetite, a big breakfast, pre-medication, is the way to go. DS1's medication isn't overly appetite depressing, but he;s still got into the habit of a 600-800 calorie breakfast and a 3oo-400 calorie lunch. Sausages, fried eggs, hot cross buns and odd apple pastries get the morning calories into him. Peanut butter and full fat (eg yeo valley) yoghurt are also good for breakfast time picky appetite calories.

Just wondering how you are all getting on. We have finished week two of the higher dose of medikinet, and things are really looking up for DD. Evenings are still a bit dicey at times, but it is early days. I can now pinpoint pretty precisely the moment she starts 'coming down' off the meds, as she disintegrates for about half an hour, but then she is back to normal and overall she definitely seems a much happier and less frustrated child.

We have had two good weekends, and she has been much nicer to her brother. She has not reported a single bad days at school (before, pick-time she would just give me an endless list of all the awful things that had happened that day), and she seems happy to go in the mornings, her only complaint now is that schoolwork is boring, but I do not expect that to change for a while (if ever...).

She also seems more self-aware in a strange way - the other evening (after the meds would have worked off) she was drawing at the kitchen table and her brother came in humming and fidgeting, and she stopped, looked up and said to him: you know I get distracted by everything and I am trying to concentrate, so can you stop that. I have never heard her talk like that before - a few weeks she would have just got extremely frustrated, torn up her drawing and started hitting her brother.

Side-effects: she is actually sleeping better now on the meds than she was before she started taking them, although she still sleeps much less than I think she should be. She has also started eating some of her lunch (at least, she makes a good effort), so I am no longer so worried about that.

Twoleftsocks - great suggestions there! DD loves hearing about famous people with ADHD, and there are loads out there!

Ourvye - I thought the 'all dogs' book was great too, but my DD was a bit about it - she hates dogs! DS didn't help because he read it giggling saying, DD, that is just like you, and she was not impressed... I think is would be great for a slightly younger child who was not a dog-hater though.

We're doing well. DS has been sleeping quite well over the last week, off to sleep by 8.30 at the latest, and even a 7pm when he was tired. We can't pin point a time when his meds wear off, but it's a slow release one so might be more subtle anyway.

He's off of his first residential school trip today / tonight and my nerves have been a bit jumpy, but I've labelled absolutely everything, got DS to pack his own bag, chatted to him about settling to sleep etc, and have complete faith in his teachers so I'm sure it'll all be fine! Bit strange as it's only his second night away from both of us, the first being when DS2 was born.

And DH had a conversation with him one morning and said afterwards, it was one of the most lucid chats they've had, and could really spot the difference. Bit like your DD's self awareness judogonzales.

Judo and Two - thank you for your updates. It sounds like things are looking really positive for your DD and DS. It feels like you are giving hope that things could improve for us too.

Can I ask what medication schedules you have been given? We are still weighing everything up, and it would be useful to know what was suggested for you and what seems to be working. Are some medications meant to be better than others/fewer side effects etc?

I am thinking maybe we should use the time over the summer to research and then if we are convinced it is the way to go, then start medication at the start of term. Any thoughts? How do your DC feel about taking tablets?

DS is on 10mg Equasym XL, which is a slow release form of methyphenidate - the pharmaceutical drug also used in Ritalin.

From what I gather (caveat - I'm so not an expert), the drug itself seems to have different effects, and side effects on different people when it is produced by different companies, despite being the same chemical. So if DS had a negetavie response to this one, we might have been advised to try a different brand or way of taking it - like a tablet in the morning and one at lunchtime.

DS takes it before breakfast and that lasts him throughout the school day. It's out of his system by the end of the day and doesn't rely on a constant top up, as I believe some of the other pharmaceutical drugs do - I don't know much about them though.

He's been happy to take it, he recognised that he really struggled to focus in class, and the main reason he takes it is to help with that. He doesn't need it at the weekends so much and we give him the choice whether he takes it or not - so far he's chosen not to apart from when he was doing swimming lessons on a Saturday.

It was because he primarily needs it to help him at school that the Dr prescribed that particular one.

He's on the lowest dose and we were advised that the effects may wear off as his body gets used to metabolising it, in which case we may choose to try a higher dose - I think 20mg is typical. He seems to be getting some benefit from it though so we, and the Dr, are happy to stick for now.

We started trying him out over the Easter hols so we could see for ourselves any positive or negative effects and be able to pass this on to the teachers, or to stop if it didn't suit him. As he doesn't take it at the weekends, we tend to rely on the teacher to tell us if he's out of sorts or anything, but we're really lucky that she's been a huge support and will grab me at hometime if she ever needs to pass anything on.

If your DS is possibly going to try out something over the hols or at the start of the September term, it might be worth having a quick chat with his teacher for next year, if only to check if there would be any practical considerations, e.g. him taking a tablet at lunchtime if that's the sort of thing he gets prescribed. I think most schools can accomodate that, I know a couple of children at ours where they pop to the school office at lunchtime for theirs. You might find the teacher quite supportive too, there's a pretty good chance they'll already have experience of this sort of thing and will probably be keen to work with you on it.

Hello everyone!

I thought I would resurrect this thread now that some time has passed and we are further along. How is everyone, and how are all the DC's doing?

Things for us have galloped along since I last posted. Camhs were very slow on the diagnosis front, but seem super speedy regarding medication. DS is now on 20mg Medinkinet (slow release). It seems to take more than an hour to kick in, but once working seems to have the effect of 'slowing' him down iyswim. In a good way.

He doesn't blurt stuff out, but pauses before he answers things, seems to get less frustrated when things are not going his way or are hard, and just generally seems less impulsive which means he is easier to be around. DS1 has said that he seems calmer, and DS2 certainly seems more, well, thoughtful in his whole demeanor.

The medication is definitely not a cure all - we've had plenty of tricky moments. It doesn't seem to work as well when he is tired or anxious - then his 'old' self comes back strongly - but so far it is making a positive difference for a lot of the time.

He's been back at school for nearly a week now, so we are planning to meet with his teacher soon to see how they are finding him. Obviously, it is a new teacher, so he doesn't know DS, but it will be interesting to see what he's like in the classroom. We did a little homework over the hols, and he did seem to be able to concentrate better on that than before, so fingers crossed!

Thanks so much for all your support earlier on. It has been a bit of a roller coaster few months! I would love to hear how your DCs are getting on. Oh, and any tips for persuading DS to eat more would be great too .

That's great to hear, ICan!

Have you tried getting a good breakfast into him? Eggs, sausages, bacon, fish fingers - in a well buttered sandwich.

Ta ouryve. How are you doing?

DS has never been keen on breakfast unfortunately. DS1 and I are the same - can't really face food early, especially not bacon and eggs. He barely eats his packed lunch either - I don't know what he runs on tbh!

Icansee how nice to have an update, and I am glad to hear that things are moving ahead with you and your DS.

We are now several months in with medication, medikinet slow-release 10mg in the morning and then a top-up of short-release 5 mg after school. She will be going onto 20mg in the mornings in a few weeks time. All our lives have definitely improved. DD just seems much more balanced and happy, much less frustration and anxiety, and she seems to have matured enormously over the past few months. She still has her moments, but they are less frequent and more manageable. With school it is difficult to say how the medication has helped, as she has just moved on to secondary school. But she has has managed the transition fantastically well so far, and is enjoying herself, and we have hardly seen any anxiety. She seems to be having fewer ups-and-downs with her friends. I feel more relaxed, and DS seems happier too.

The only side-effect we still see is loss of appetite, DD rarely eats her packed lunch, and I do worry about it a bit. But she has grown a good 5 cms over since starting the medication, so I guess that she been eating enough!

One other strange 'side effect': She was diagnosed as being on the autistic spectrum at the same time as being diagnosed with adhd. I was not originally very convinced about this, but since starting the medication, DH and I have been able to identify her autistic traits more clearly, she has what we see as her 'Saga' moments (anybody who watches Scandinavian crime drama series will probably know what I mean!).

She is just such a great kid, I feel enormously proud of her.

I hope everybody else is doing well, it would be great to know how you and your DC are doing!