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Here you'll find advice from parents and teachers on special needs education.

Original poster

Inattentive ADHD teen - meds experiences

56 replies

Pantoufle23 · 09/07/2021 23:13

Hi, I have a recently diagnosed 15yr old dd. Academically able and school were completely unaware whilst she has been falling apart at home with homework and revision, massively propped up by us. Appt with psych in a few days to discuss meds as we’ve tried pretty much everything else, though it hasn’t been an easy decision. Keen to hear experiences of those of you with dc diagnosed in teens, esp girls. How much have meds helped and any problems with them? Big thanks x
(Also posted in child mental health)

OP posts:
Tomnooktoldmeto · 11/08/2021 20:39

To be honest you need to consider your future plan

At the moment you’re being seen privately, if you are planning on moving into NHS care then you need to consider what your local area will actually prescribe

For example DD diagnosed by CAMHS started on Concerta XL to allow 12 hours function takes tablet at 8am kicks in about 9 and wears of between 8-9pm

However as soon as she was handed over to GP shared care they changed her to a generic initially Xaggitin but latterly Delmosart

For DD this has been fine, however…

DS diagnosed privately and started on Concerta XL all fine, transferred to our NHS adhd service and shared care with GP practice who immediately change him over to the cheaper Delmosart

DS now has gut problems on the Delmosart which as a very low weight coeliac isn’t happy about, despite the adhd service having concerns about his weight saving money is more important than a patient’s well being and we’re weeks away from being handed on to the adult team when DS turns 18 later this year

I guess what I’m trying to say is if you’re planning on nhs care going forward be aware they are generally only funding the cheapest treatment plans they can

Original poster
Pantoufle23 · 11/08/2021 20:11

Thanks , a way to go I fear but have to keep hoping! She will be put on an XL in a couple weeks after increasing dose again.

I am trying to understand how older teens who need to do homework/revision manage later in evening? If on Concerta that would have worn off by 6-8pm? Is it better to go for something like Medikinet which would in theory wear off by end of school and then take a dose of the short acting methylphenidate early evening?

OP posts:
Tomnooktoldmeto · 10/08/2021 19:16

That’s great news, hopefully your DD will settle well on the new dose and be ready for September

Original poster
Pantoufle23 · 10/08/2021 19:04

Thanks yes side effect have calmed down. Another appt tomorrow and likely dose increase. If that goes well then move to XL next.

OP posts:
Tomnooktoldmeto · 07/08/2021 17:20

Hi @Pantoufle23 it’s great to hear she’s at least responding, personally I would push for XL to give greater stability

Manchestertimes · 07/08/2021 17:20

Hi, maybe it will just take time for your daughter to get used to the increase in medication. We start medication at the end of August so will only have a week in before school starts.

Original poster
Pantoufle23 · 07/08/2021 16:56

Hi Manchestertimes, it's a bit of a rollercoaster here. We are on our 4th dose increase (having seen nothing) of methylphenidate (fast acting Ritalin rather than Concerta, as the dr prefers to trial with this and then move across if it works). This can however mean more peaks and troughs ..which is what is happening). 20mg twice a day is having some effect finally on concentration for an hour or 2 (she has loads of homework so it is v easy for us to trial). However she is having really severe rebound/crash after it wears off ( a couple of hours) and becomes very tired and moody/depressed, or irritable/overwhelmed if she makes the mistake of trying to finish any work at this point. So it's positive that finally we can see something but the side effect is not great. I also wonder if she is actually a bit worse than pre meds when she isn't on them - we tried homework yesterday morning just to see and her fidgeting and lack of focus was really bad and she just couldn't do anything really. Frankly I have no idea how she would cope with titration during term time but I am aware that for many things go much more smoothly and that a lower dose works much more quickly. Also many drs start with Concerta from the outset which would be a much smoother process I think.

OP posts:
Manchestertimes · 07/08/2021 00:57

Hi Pantoufle23, I was wondering how your daughter is getting on with the medication? Any better x

Tomnooktoldmeto · 01/08/2021 11:13

Manchester she really needs to change her mind set, as I explained earlier you need to present your diagnosis in September to ensure she gets extra time awarded by the exam boards to level the playing field otherwise she is disadvantaged

Original poster
Pantoufle23 · 01/08/2021 11:00

Ours have accepted a private diagnosis without being consulted as part of the evaluation. Do you have a QB test which might help back it up? I understand though, Dd is worried about being singled out but she has timing issues in exams so .....

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Manchestertimes · 01/08/2021 10:51

Yes she has GCSEs next year but I think I will wait and see how things go with the medication before telling school. I don't know if they would accept a private diagnosis. She doesn't want anyone to know about it.

Original poster
Pantoufle23 · 01/08/2021 07:14

Manchestertimes, sounds v similar. Does she have GCSE’s next year? We are still dealing with the shock of diagnosis despite expecting it - denial and then grief have been part of it. I hope it will be easier when meds eventually have some effect (hopefully!). We informed school just before end of term and we still expect some individual teachers to voice their disbelief.

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Manchestertimes · 31/07/2021 23:19

My daughter is 15. I have micromanaged everything regarding school. I have to sit and revise every test with her and supervise homework or it would never be done. As a result she does really well in tests at school so they don't see the problems we face. It has been a nightmare as she fights against us so much. I have had a private diagnosis and still feel a bit in shock that ADHD was confirmed. I worry that maybe they have got it wrong and maybe it's just her personality. Sorry for rambling but I worry how the medication will affect her. She doesn't want school to be informed of the diagnosis.

Tomnooktoldmeto · 31/07/2021 21:55

The joy of it all is that I have 3 of them, DH,DD and DS. DH isn’t medicated and I spend a large amount of time keeping them all on track and organised daily

Luckily for them although I am now disabled I am an Uber organised forward planning horizon scanner so we complement each other generally

Original poster
Pantoufle23 · 31/07/2021 20:49

Thanks Manchestertimes, wish lots of luck with it. How old is your dd/ds? It’s a frustrating process but have to hope things will click soon!

Tomnooktoldmetoo - fingers crossed for you too

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Manchestertimes · 31/07/2021 19:40

Hi, reading your replies with interest as we start meds in a few weeks. Hope it works out well for your daughter.

Tomnooktoldmeto · 31/07/2021 17:45

He normally settles eventually but his weight bumps along the bottom of the centiles so it’s a constant battle as he’s a coeliac too

Fortunately when the meds wear off he gets the mega munchies so I pack calorie dense food in at that point Grin

Original poster
Pantoufle23 · 31/07/2021 17:34

Hope the side effects wear off for him. We have another dose increase with another review in 5 days.

OP posts:
Tomnooktoldmeto · 31/07/2021 11:24

Fingers crossed for you, we’re currently day 5 of a new dose for DS, focus is much better but his appetite and nausea are making it a rough ride but hopefully he will settle in the next week

Original poster
Pantoufle23 · 30/07/2021 23:05

Thanks for the clarification- we aren’t seeing anything obvious like this. She was screened for anxiety/depression but not asd I think the procrastination has arisen out of adhd as it is in subjects where she has trouble getting her thoughts to line up - and this and her perfectionism does make her anxious at times. She did QB test and had a v high adhd score on top of the clinical diagnosis.

Fingers crossed it’s just a dosage issue...

OP posts:
Tomnooktoldmeto · 30/07/2021 22:13

Has your DD had full screening done for all conditions? It could be just because she’s not up to her correct dose yet but you could also be identifying some demand avoidance which could be a sign of a comorbidity like ASD or anxiety which both go hand in hand with adhd

With DD on meds she’s bright buzzing and works productively unless she’s anxious about the work when the demand avoidance and procrastination kicks in but this is down to ASD

With DS he becames much more focused in behaviour, I need to give a lot less prompts and he stops fidgeting, you can see his focus drop and the twiddling starts as his meds wear off

Original poster
Pantoufle23 · 30/07/2021 19:31

thanks - appreciate hearing about your experience. Can I ask what you see/feel happen that makes it clear? We have good days and bad days of course but the reality is we can't see anything obvious and DD still finds school work that she doesn't feel overwhelmed by easier to deal with and still has a problem with anything challenging/overwhelming.

OP posts:
Tomnooktoldmeto · 30/07/2021 19:18

Hi Pantoufle, yes we can literally sit there and see it take effect, quite interesting to observe and very obvious even with just a dose increase

Original poster
Pantoufle23 · 30/07/2021 18:44

Thanks alot Tomnooktoldmeto, we chatted before. Just wondering if for some methylphenidate (Ritalin/Concerta) just doesn't do anything til a higher dose is reached? We see Dr again tomorrow so will have to try to gauge the options but I guess she will make us to another one or 2 increases before discussing alternatives. I know these things take time, it's just you always hope you will be one of the lucky ones to get a fairly obvious response.

Could you DD and DS clearly tell when it was working for them ie no trying to convince yourself you can tell a difference?

OP posts:
Tomnooktoldmeto · 30/07/2021 15:27

I have no experience of Ritalin as both of mine started on Concerta XL, DD has always needed a higher dose than DS lower doses worked but only moderately as she really was dead in the water

We went with Concerta XL to cover the school day and time for homework, I think the short acting ones in our case would only be useful for boosting as they need the prolonged release

In your position I think I’d be asking to try a different formulation as we see an instant response within an hour that’s literally like a light being switched on