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!

What's people's thoughts on having medication breaks in the school holidays? We were advised to give DS a break by the doctor but DS has been really wired and sensitive since going back on it last week. I can tell he's really struggling with stimuli. Wondering if the two are connected or if it's a coincidence. It doesn't feel like taking a break has had any benefit for him.

@TeamPolin Hi there! We experience very much the same as you. Ds struggles with the break and it takes him around two weeks to be fully back to himself after a break. BUT there is solid evidence they help prevent medication tolerance developing and they also help weight gain and growth, so we persist with them. We do about 5 or 6 weeks off per year.

We don't do medication breaks for DS as he is so different without his meds & still needs the concentration etc that they help with for socialising, clubs etc. He has autism too. His appetite doesn't decrease on meds so that's not a concern for us.

That's useful insight. We took him off it for two weeks. Maybe that was too long in one go. @MissHavershamReturns how many days off the meds do you do in one go?

@changedmyname24 my DS has autism too. Maybe that's a factor.

I know some at the end of the old thread were talking about EHCP. We have been very lucky, the more horror stories I hear, the luckier I feel.

DS2'S nursery picked up that he would need extra help & got a One plan in place & I think an IEP. Then when he got to school, they had an Educational Psychologist in to see him & he got an EHCP pretty instantly, certainly by the first half term break. He started off with 35 hours 1-1, went down to 32.5 at Junior school, so he could build a bit of independence. Still has the same level now (Year 8) & 1-1 in class & clubs, special arrangements in exams.

I do hope you are all successful soon.

Just realised my last posts were under the wrong name 🙈 I was @changedmyname24

Hi All!

Anyone on equasym xl - it's out again 😭😭

We don't tend to as my DS takes so long to settle on meds - but if weight is an issue I think they might be necessary. Hes ok at the minute

Just joining new thread!

I would love not to have medication breaks as DD (15) is a much nicer person to live with on them. Dr likes breaks...

However we are seeing him next week and I am going to wave the latest school report "DD really needs to learn to focus", "If DD could learn to pay attention she would be more likely to get the grades she is capable of" 🙄and beg for continuous meds to get us through the next 18 months!

When we first got prescribed medication by the paediatrician they never really advised either way regarding med breaks. Very much left it up to me to decide, we also get prescribed both 10mg and 20mg and again it’s up to me if I want to give 10 on weekends and on holidays.
Now it’s been transferred to the GP so there’s even less input.

I have been doing med breaks just because i worry about growth. I also don’t usually notice much difference when he’s not on them. I do find we usually have a tricky week straight after a break though, he’ll be quite angry in the evenings.

We've just finished day 3 on .5mg Intuniv for DS7 He went to school today and was able to stay the whole day. I think it's some combination of non -stimulant meds and absolutely no demands. He's in a resource base but even that has been impossible for him. Mostly because I don't think staff was adequately trained or experienced so we reached the point of burnout. He spent almost the full day on an ipad. In the past that would have made me furious but I know it's what he needs right now to level set. He did join in voluntarily for a couple of activities. Hopefully with meds and low demands he will choose to participate in more soon.

@HauntedPencil oh no! I just managed to get my 30mg no problem. Is it lower doses?

We don't do med breaks here but I often wonder if we should. He's had the odd day off but that's all.

Oh my word. I think my head might explode this morning.
Normal daily medication of Equasym XL 20mg is unavailable, so they’ve given him an alternative of Medikinet XL 20mg caps - it’s like he’s had no medication whatsoever. This morning getting him ready for school was just like he was 18months ago. Equasym is the same medication methylphenidate, but it released 30/70% Medikinet releases 50/50 in caps form - I can’t believe how different he is.
has anyone else had this issue?!

Yes Medikinet wasn't great for us. I've gone online seeing what I can find and think it's going to be dicey until June getting it or not I'm gutted as DS has just improved so much. Hopefully won't be for long

My DS has 10mg immediate release at 4pm and he’s fine with that. I think of Medikinet carries on being not so great I might ask his dr to prescribe him that for 3 times a day.
This weekend, when I knew we were going to come up short, I just gave him that tablet twice a day and he was fine with it. But a weekend is different from a school day, so will have to see how it works out.

@HauntedPencil yes, June

Kefir? Worth a shot I suppose!

Interesting!
I make my own kefir, DS has so far refused to try it (despite being otherwise fairly adventurous with food). I'll have another go!

It's been a long radio silence from me but I have been reading all your updates.

Thanks for the new thread @MissHavershamReturns and hope things are ok with you. Similarly things have been very busy here, just not ADHD-related.

Things seem pretty under control on the ADHD side which is great. Parents' evening was a non-event, 'he's doing fine', which makes a change from previous years!

DS has now been on meds for just over a year, we started doing medication breaks (school holidays and weekends) 6 months in as we were worried about growth. I measured him recently and he's grown 1cm in the last couple of months, and a total of 4cm since this time last year. So that's ok, not brilliant but at least he's growing now.

He's on 25mg Medikinet slow release in the mornings, and 5mg instant release top up at lunch. I don't really want him on a top up by the time he hits high school, but we've got another year before we need to deal with that.

Update on meds here: I went & saw the GP in person on Friday & was told not to accept 2 x 18mg, because it wouldn't be effective enough, due to being slow release. So I rang round about 10 different pharmacies for 36mg before trying Pharmacy 2 U, who told me they had a small stock, so to register then go ahead & order. I did so, but by the time they had contacted the GP & it had been approved, they were out of stock again. But they said that the GP had now approved 2 x 18. So I rang GP back & indeed they had, even though it won't be as effective. But I now have to wait for it to be dispensed then dispatched, so probably won't have it before Monday!

In the meantime, DS has 2 days of exams this week & only 1 x 36 left! He is taking the 27 we had left over on all days except when his trickiest exam is. Whole thing is a nightmare, I have spent about an hour most days trying to sort it, without success.

And now the car warning light has come on again, we might have an exchange student come to stay at a week's notice & DH can't find a job, which is making him depressed & snappy at everyone, so it's stressful when he's at home.

😭 And breathe!

Hi all. Thanks for the new threat @MissHavershamReturns My DD has had her dose increased to 20mg Medikinet XL. She seems to think it helps her concentrate more. I'm really scared right now because she will be 18 in two months and I saw on the news today that in some places the wait for a change in dose can to 7 years (!!!) in adult services. We have had it relatively good in CAMHS up until now. I know most of you have younger kids but my DD has been applying for unis and so far, one is outstanding in its disability team. I have such high hopes for the future for her when it looked so dark a couple of years ago. I'm not resting on my laurels though because I know what we have exams and some big transition coming (turning 18 and uni). The medication shortage is truly awful, it hasn't affected us yet but I really feel for those who can't get medication or for people like @changedmyname24 who's DS is having exams! It's really bad. I hope he's okay. Good luck with exams. I'm assuming Scotland? My ADHD DD is doing Highers and AH and my middle DD is doing Nat 5s and has two this week too.

Thank you @Hapagirl48. Thankfully these are only internal exams as he is Year 8, but the first he has done in secondary school. He went recently from getting less than 25% to getting about 50%, and also actually finishing papers, which felt like a massive improvement, but I fear that won't reflected in these if he is not properly medicated.

Good luck to your DD, big times for her with exams & the transition to adulthood & all that entails.

The shortages are a bloody nightmare. After months and months of struggling we are finally settled down and now can't get his proper meds he's better on, I really hope it's temporary.

Aside from that the rigramole monthly of trying to get scripts changed and going back and fore is just one more draining thing isn't it!

Hope your DS exams go ok, we've had 4x10
Rather than 2x20 this month and whilst not ideal is something.

Thanks @changedmyname24 Does you DS get adjustments for his exams? My DD would routinely fail exams because she would miss out entire pages of the paper. She has a prompter now which really helps. And extra time.