Starting ADHD medication and staying on it. Ongoing support thread for newbies and experts including Medikinet, Equasym, Concerta, Strattera and others

[MissHavershamReturns]

Another thread for us to support and encourage each other in Medication journeys for our children, right from considering medication for your dc and the earliest days of trying the medication for the first time. Lots of information here also with potential medication switching and the path of moving up dosages until the right stopping place is found (titration).

All information on here is from a parent experience perspective. I am definitely not an hcp, just a mum who is happy to share my family’s ultimately positive experience with the medication, through ups and downs. Others posting here are also just doing so as parent ‘experts by experience’.

That said, the parent knowledge on here is phenomenal and there is help on the benefits of the medication, management of potential side effects, as well as practical tips on how to make taking the medication more straightforward, taking med breaks etc.

This is a really good place to read about recent medication journeys from the supportive crowd on the thread.

A really good starting place for reading about the range of drugs available and what they do from a Great Ormond Street specialist with over 40 years of experience prescribing the medication is the Parents’ Guide to ADHD Medicines, by Professor Peter Hill, which is available on Amazon. A really accessible, honest and overall reassuring read, which helped me when I was very doubtful back at the start.

The tips on diet from this NHS factsheet on managing reduced appetite in children on the meds are also really useful www.tewv.nhs.uk/about-your-care/conditions/adhd/weight-loss/ My ds was already very skinny when we started the meds, so with hindsight it would have been good to feed him up a bit so there was a bit of a buffer when he became a bit less hungry.

As parents of children with special needs we can sometimes need a bit of support ourselves and I found this book very practical and reassuring on self-care and how to manage SN parenting. The book I wish I had had in the earliest days of having an ND child: Joanna Griffin, ‘Day by Day: Emotional Wellbeing in Parents of Disabled Children’.

This is thread 3 and thread 2 can be found here: https://www.mumsnet.com/talk/special_needs/4800866-starting-adhd-medication-and-staying-on-it-ongoing-support-thread-for-newbies-and-experts-including-medikinet-equasym-concerta-strattera-and-others. Thread 1 can be found here: www.mumsnet.com/talk/special_needs/4466553-Starting-Medikinet-any-experts-around?page=38. I’ve posted my path with my dc from starting meds through to the end of titration here, as have many knowledgeable mumsnetters, so these are good places to read back to see a range of ways that meds journeys can unfold.

I’m sure thread 3 will be the best yet, so welcome one and all!

Just updating to my earlier post. The come down is now MUCH better, he's tired and quiet after school but tantrums have stopped (he was AWFUL weeks 1-2.5). Still sleeping later but not 11pm anymore. 10mg mephlinate slow release

Only thing is the school find him really day dreamy and disengaged. Might a higher dose or different brand help? Speaking to dr next week

DS 12 has been on 30mg of Medikinet for a week or so but we still don't really see any positives. It might be difficult to tell though because he's not been going to school, so is mostly doing things he enjoys at home but still struggles even to do tiny amounts of school work or things he doesn't love doing.

We've tried three varieties of methyphenidate (tranquilyn, metyrol and Medikinet) and I think he's tolerated Medikinet the best but given we've not seen an improvement in concentration, maybe it's time to try non-stimulants? At least this is what the CAMHS prescriber said would be the next step. Would there be any point in trying Equasym or another stimulant?

He has lost appetite and a little weight throughout titration, and is already small for his age, so I'm starting to think we should take a break while he's got EBSA, give him a chance to gain a bit back and maybe resume when/if he's able to go back to school.

DD is on Equasym as the XR and Tranquilyn as top ups. I don't see any difference in effect.

Equasym has iirc a 30% IR and 70% XR, whereas I think Medikinet is 50/50. But that shouldn't make a difference in terms of seeing an effect.

We had dramatic difference from the very first 5mg dose of Tranquilyn (and that was based on teachers who had no idea she was ADHD or medicated asking if aliens had kidnapped my child as she was so focused and cooperative compared with normal).

Might be worth your trying non stimulants.

Hello, first time posting here. My daughter is 7 and has had an ASD diagnosis since she was 4. Now being assessed for ADHD also. She was assessed for the first time a year ago and the nurse said she was borderline but they wanted to wait and see her again at 7. This was mainly due to her teacher giving a low score on the questionnaire. She has just had her repeat school observation and myself and the school have repeated the Connors questionnaires.

I got a phone call from the nurse who said her behaviour was much more obvious in this observation as she became very dysregulated and had to be removed from the classroom during it. She hadn't seen our questionnaires at that point so couldn't provide any more info but has made us a clinic appointment for 2 weeks time.

Just wondering if anyone has any advice ahead of the appointment and what I should ask if she does give a diagnosis?

Her main challenges are with emotional regulation, organisation and persisting with tasks she finds tricky. She can be quite defiant at school, less at home but definitely there. Her ASD traits are much less obvious now whereas they used to be quite stereotypical (lining up toys, noise sensitivity, difficulty with expressive speech) she is bright but refuses to start any work or tasks that require any mental effort.

Just to add, her teacher this year says she sees a lot of ADHD traits and said so to the nurse during the observation. The school are generally pretty supportive and she has 1:1 asn assistant with her for all class time (doesn't need it at breaks/lunch). Loads of interventions have been tried at school but the effects never last once she is used to them.

She struggles with friendships as she is so explosive and unpredictable the other kids at school are a bit wary of her. She doesn't seem to get a hard time from them though fortunately. Has a few casual friendships from a support group we go to and gels well with ADHD diagnosed kids or those with dual diagnosis. Can't attend clubs unless we go with her as they can't manage her behaviour)

If she is diagnosed we would be interested in medication. Though the ADHD nurse said it tends not to work very well with kids who also have ASD so I'm not holding out too much hope.

She's already on melatonin which has helped loads with her sleep.

Sorry for the info dump!

Thx Squash and OhCrumbs...we too only use when necessary. Though we have given it for afterschool club at school finish time. Wonder if that's too early? DS takes his 20mg XL at 8am and defo notices a 'change' by school sometime-needs to decompress at home. Wondered if that was part of the XL wearing off so giving the top up added that back in....

10mg of Medikinet really helped DS, we then got Tranquilyn (same dose) and it doesn’t seem to work as well.

Is that possible?

Trying really heard not to stress at DD but she is not taking her medicine, we've tried it in yoghurt and the capsule itself. We've tried it in chocolate yoghurt.

Nothing is working

@macap really struggling to get DS to take his meds too. He is on a liquid med now (Strattera) and says that it tastes disgusting. No advice but just to offer solidarity. I have had some success with bribes, e.g. I will buy you £5 of Robux for taking meds. Not consistently successful and rather expensive but I was hoping that it would help him adjust ...

@xSilverandcoldx hello, very odd what the nurse said. But also is it only the nurse that you have spoken with? I would expect it to be a neurologist/psycologist who can give advice on this sort of thing.

That's bullshit that it doesn't work for kids with ASD. In fact DS' neurologist has been not keen to up his dose too much as he thinks that kids with ASD react quite a lot to it. Anyway my DS with both who is almost 7 has had a lot of success on meds, not totally plain sailing/all positive but it's a strong drug so there will be a balance to find.

Where are you based? Just thinking if there's any local support i can think of if youre SW london/surrey ish.

@macap have you tried nutella specifically? It's easier to make a parcel with that consistency

Update from me.
Ive lost school's buy in a bit as they think he's still a bit dreamy, however evenings much better and he's thinking much more in an organised way.

He wants to start a club in the evenings and i wish the dr would met him have a top up but he said it's too early to start extra doses. Im keen for him to do it but a bit worried about tiredness levels

I haven't no! I tried the Cadbury yoghurt think it's called pot of joy? It was quite thick. I really really want her to try them as I do think they'll help. I'll grab some Nutella tonight at the shop, thank you!

Honestly nutella for the win, you just fold it so the meds are in thr middle and because it's jot 100% smooth anyway you cant taste the grains.

Peanut b probably the same

@Mrburnshound thanks for your reply. I'm in Scotland so possibly a different system up here. In my area it's nurse led (diagnosis and meds), so she has had input from educational psychologist and paediatrician since getting her ASD diagnosis a couple of years ago but they are not able to do anything about an ADHD diagnosis.

Its just so frustrating bouncing around between professionals sometimes.

I'm glad to hear your ds has had a good response to medication, that makes me feel more hopeful!

Ah I see, that's very frustrating for you. Especially when you need to ask her questions but she holds those beliefs, i would be very can you afford to go private if you are unsatisified with her next appt?

Im a bit wary of some nhs practitioners as the lady who diagnosed DS' ASD said he "definitely" didnt have adhd, but then i went to a specialist who said "definitely yes" 12 months later.

Hope everyone is all doing ok.

Im going to ask the dr if we can lower ds' dose as he's still so spaced out. It's the only downside now but a pretty big one.

Thank you 🤩

Worked a lot better!

Hello all, since medikinet and elvanse were not suitable for ds 6, his consultant is suggesting guanfacine. We've read about it in the brilliant book recommended here, but have reservations.
Has anyone got experience of this?
I feel we are edging towards stopping the meds until secondary. Letting him be more involved and giving him time to develop strategies. For us, his main concern is lack of concentration at school. Off medication, he's much more emotionally stable and happier. He has friends and is independent.
Someone also suggested magnesium, I would have no idea where to start with that either so would welcome any views.
I've got a meeting this week with his sch to discuss strategies and support.

@TinselTarTars I am in a not dissimilar position to you.

We tried Vyanse but the comedown was horrific and the most aggressive behaviours I have ever seen from him - although at school he was much better.

Psychiatrist recommended we try a non-stimulant and he is currently prescribed Strattera. However, on his required dosage it is only available as a strong smelling liquid. DS is autistic and has learning disabilities and trying to get him to take these meds is a nightmare. I have decided that the anxiety caused by taking the meds is making things worse. So we're taking a little break. The psychiatrist had suggested Strattera or guanfacine in December. However, we opted for Strattera as guanfacine does not come as a liquid and DS has not yet learnt how to take a pill/capsule.

So my current plan is to have a little break and then work on learning to swallow a tablet - we have been practicing with tic tacs. And then ask for guanfacine. Either way he really does need to learn how to take a pill as he is 11.

What I am less clear on is why the psychiatrist never suggested any of the more common stimulants used for children.

Does anyone have any good tips for helping children learn how to take pills?

@Mrburnshound we could go private for the assessment as I have some money saved for this just in case, but wouldn't be able to pay for ongoing medication privately. My worry is that if she's been turned down for an NHS diagnosis they might not accept the ongoing care for medication.

Got an appointment for tomorrow to discuss the results and they said I don't need to bring her so I'm not sure that's a good sign.

Honestly I've only ever heard of the method which you have already mentioned, using tic tacs.

It's so difficult! I did see one thing where it said to pop your chin down as this opens up your throat so makes it easier for tablets to go down?

A lot of people think tipping their head backwards helps but apparently it makes it more difficult.

Hi, thanks for replying. The come down here was horrendous. We never had any physical behaviors, yet on the medication he became violent and would cry, scream and shout.
He would swallow the tablet with an actimel, but I understand there may be some sensory concerns along with the asd.
Our consultant said there are only four medications they'll offer and we've been offered 3 so far, we don't want a cocktail of medication either.
Sleep and food was never an issue prior to medication, but we saw this impacted to. It's so difficult navigating it isn't it?

My doctor said taking the tic tac with a gulp of water from a straw helps as it makes your head tilt downwards

Funnily enough i was researching guanfancine last night, i was reading that it can be taken with stimulants if they are burning off too quick.

Im also looking at what other brand we can ask for but will hestitate with vyvanse if it causes anger, meflynate xl did cause anger the first 2-3 weeks but seems better now.

Popping on very quickly on swallowing tablets @dimples76 . The medication book linked in the op recommends using cake decorations to work up slowly to tablet size. So start with hundreds and thousands which are minuscule and most children are going to like the taste. Then slightly larger cake decorations until you get to the size of the capsules.