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

[MissHavershamReturns]

Another thread to keep the support and encouragement going as we keep each other company along the journey, starting with considering trying medication for your dc and the earliest days of trying medication. Lots of help here also with potential medication switching and the path of moving up dosages until the right stopping place is found (titration).

There is an amazing pool of parent knowledge on here of 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. I will answer any questions I can from my family’s ultimately positive experience with the medication, through a range of ups and downs. Should say upfront though that I have no expertise and am not an hcp, just a mum.

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.

This is thread 2 and 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 it’s a good place to read back to see a range of ways that meds journeys can unfold.

Looking forward to thread 2!

Thank you @MissHavershamReturns. Adult DS has recently been diagnosed and to my surprise refused medication, but I'm working in him! Mainly because her starts Uni soon so I think it will be help him with his studies.

Hi @SiouxsieSiouxStiletto welcome to the thread! How brilliant that he has a dx now and medication definitely has the potential to help with studies. It might help for him to read the book I mentioned in my op? It does refer to uni studies a tiny bit as well in a few places.

Might also help to suggest he asks to start on a relatively low dose. At very low doses most people don’t seem to feel any overwhelming effects but hopefully get a taste of the positives. I asked my ds how he felt shortly after he started and he said “happy”. Prof Hill says in his book the word his patients most often used was “calm”.

Thread 1 is not quite finished, so it might be a bit quiet here for a day or so until everyone moves over!

Hello! Just checking in so I can find the thread!!

Hello!

hope weekend going great especially for some of us in meds break 🙄😫

Thanks for starting the new thread, just popping on to make sure I don't lose it

Hi @NurseP @HauntedPencil and @MathsIsFab

How is the meds break going @MathsIsFab

Has anybody travelled abroad with the medication?

Yes we have @Freshstarts22 with no issues whatsoever. We were advised by consultant to check the country you are travelling to allows the meds in eg she said some countries and I think she mentioned Dubai and Japan but couldn’t swear to that could be issues.

Once you’ve done that then you get a letter to say what they are and what the are for and confirm prescribed. Our consultant provided that but we were still private at that point. We were also told to take a photocopy of the prescription.

We took them to Spain and no one ever asked to see the documents or even asked about them!

Same no issues here - we'd only just started on them and I was really nervous and I didn't have a consultants letter but I asked on here and put the medication in the tray at security - told to make sure the pharmacy sticker was on there etc.

I didn't have time to get a letter because it only occurred to me just before we travelled but was told to make sure I took the original packaging with the sticker on it.

We also put in the tray at security at the airport and took new box where poss (we have two med box type due to using top ups)and used the original pharmacy bag as well!

I’ve just finished off the other thread to get it to 1,000 posts and actually feeling quite tearful now which I wasn’t expecting.

What a fifteen months it’s been and how far dc has come in that time! He will always have the challenges of his ASD and his ADHD and every day brings its ups and downs, but it’s amazing that he’s now staying in the classroom most of the time and not melting down daily anymore

Definitely going to keep it pinned to look back at and think I need a and

Some useful info here about how to travel abroad with the meds https://psychiatry-uk.com/165709-2/

@MissHavershamReturns I'm not surprised you feel tearful, it's a great thread that's not only helped so many but also documented your son's brilliant journey!

I'm here on the new thread. My DS is 8 and was diagnosed (privately) at the start of April. We have now been on meds 2 weeks and our current dosage is 10mg of Equasym with a 5mg Medikinet top up between 2-3pm. So far he's doing really well with no side effects other than a loss of appetite. For context as we are at the start of a new thread, DS also very likely to have dyspraxia (assessment in October) and jury is out on ASD. And advisory teacher said she thought he did have it, educational pyschologist said she doesn't think he does. We know he has traits. He will hopefully be having an NHS ASD assessment around September.

We are speaking to the consultant tomorrow and I suspect she will up the dosage. We are really keen to get meds as titrated as possible before the end of the academic year as DS currently has a fantastic teacher who knows him really well and obviously also knows what he is like in his unmedicated state. School is where he really struggles. He is generally fine at home, he's like a giant slobbery excitable puppy but we obviously love him like that 🤣. I also want medication sorted before he has his ASD assessment as the Educational Pyschologist thinks his weak social interactions and sensory seeking behaviour are because of his ADHD not because of ASD.

Has anyone been given top up doses for those on extended release meds? Have just picked up my sons first lot and he’s been given 10mg immediate release tablets. I was actually expecting 5mg ones so was a bit taken aback.

Hello, thanks for the new thread!

We've now got DS up to 20mg Medikinet. After a horrendous night the first night after increasing the dose we took him down to 15mg (by opening & splitting the pill) and kept him on that for a few days. He's been on the full 20mg for a few days and sleep, appetite, mood etc all seem fine. So if we do have to go up to 30mg we'd taper the dose up in the same way.

Will talk to his teacher about what she's seeing in class later this week. Not seen much difference at home but his main issue was (total lack of) concentration in class anyway. Possibly he's more talkative and incoherent coming home from school which I wondered could be a reaction as the meds wear off.

@rhubarb84 that's exactly the same issue my son had at school. We heard from the consultant today that we can go up to 20mg so hoping that's helpful. How did you split the pill? Is it a capsule? We might follow your lead and do this to see how we go. Let us know what your DS's teacher says 🙂🤞 I've definitely noticed mine needs less help with homework which is great.

@OnePlusOneEquals we have top ups of 5mg and our main dose has just gone up to 20mg. I did mention to the consultant than the afternoon one didn't seem hugely effective but she didn't offer to (or suggest) upping it so we will continue on with our 5mg but honestly I suspect 10 would be fine. What is our DS's main dose? Could you split the pill to start with?

@WesternEasterner his main dose is 20mg XL Equasym, been on it since Oct last year. He had a week at 10mg for titration at the start.
He definitely needs something from 4pm most days, so will see how he goes with the 10mg and then reduce if required.

@OnePlusOneEquals we currently need something at 2-2:30 for our DS! By 5:30 the top up has worn off but that seems ok for us most of the time. No good for his clubs that are at 5 but there we are!

Did you / others find the higher dosages last longer? We get a good 7 hours out of our Equasym XL but we need to take at 7:30 in order to get out the house 🤣.

We (unfortunately) have to be up from 6.45am due to commute/school runs. I do leave DS’s waking till last at 7.20 and he takes his meds then. They do last longer than I thought, till around 3ish when he gets home. Didn’t try the top up last night as he was pretty chilled, though less so at around 8/9pm - he just a bit unpredictable really as to his moods, but mainly he needs something!

@MissHavershamReturns , just seen the end of thread one.

I’ve realised ours are supposed to be taken before food but that’s just not possible. He’s up at 6 and likes to eat as soon as he’s up pretty much. I obviously can’t give him his medication that early because it would wear off. Do you think a bowl of cereal an hour before he takes it will matter?

@Freshstarts22 I've just realised ours should too but we just can't do that. DS is in a very good morning routine but breakfast comes first. If we have meds then it would be at like 6:50 and that's too early.

They seem to have been working well taking them just after food.

I also worry if he eats after he might not be hungry.

Gosh I'm such a doughnut I thought it was after food and have been doing that all this time. Not much choice though like you all!

Quick q, has anyone got a plan in place at the school? Can't remember what they are now called!!

At the weekend I am going to try it before food - perhaps it will last longer?? I suspect it just kicks in quicker on an empty stomach?

So we have a new prescription on its way for 20mg of Equasym. We still have 10 days worth of the 10mg. Do you think we can use them up by giving 2 of the 10mg ones? I don't think I can see an issue with this - provided I gave them at the same time it would be fine? Are the 20mg ones actually 20mg capsules or are they 2 of the 10mg?

Hope that all makes sense!

Did anyone watch the Sam Thompson ADHD program the other night? I enjoyed it but the medication part annoyed me. He tried it for one day and then gave up. The whole show glossed over the significant improvements medication can make for the majority.