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!

@WesternEasterner this sounds like a wonderful break. So glad to hear you’ve been having a good time and DS has gone well.

It’s so funny you’ve posted this because funnily enough I’ve seen similar with DS this Easter. We’ve been in a rural area with lots of long walks and DS has thrived on no medication at all.

I think for me it’s really highlighted the truth of the social model of disability: that in themselves our kids are perfect but it’s the demands of society that disable them. Eg sit still in school, do exams, be quiet in restaurants etc. Mine needs the meds to be able to manage through what our culture requires of him.

https://www.bacp.co.uk/bacp-journals/bacp-children-young-people-and-families-journal/december-2020/parenting-a-disabled-child/

“the social model of disability highlights that, while the impairment can be a challenge, it is often the environment that is disabling rather than the individual. For example, if a child who has sensory processing disorder may be overwhelmed by a busy classroom. If appropriate adaptations are made, for example they are placed in a smaller group, provided with clear visual prompts to help them focus or allowed to wear ear defenders, they are enabled to access the curriculum.”

I hope you're all having/had good Easter holidays. Ours have been pretty good, bit of a blip yesterday when we saw friends who reignited some obsessive behaviours in DS, but otherwise pretty good.

One notable development is that DS turned 13 on Monday. What I didn't realise is this meant he was no longer on my NHS app so I can order his repeat prescriptions (for this & also epilepsy & asthma meds). So I had to go down to the doctor surgery & after much discussion, they agreed to re-add him to mine as he has demonstrable SEN. So he is now on there till 16. Just a heads-up in case anybody else has a SEN child the same age though.

Oh no @confusedofengland how annoying for you and thanks so much for highlighting that! I’m going to ask GP about it for sure.

Oh wow - thanks for sharing that @confusedofengland

First timer here. Started 5mg medikinet XL on my 7yo son this morning. I stayed up late last night reading this thread from the very beginning and am feeling hopeful based on everyone here. He has severe ADHD, sensory processing, ASD/PDA traits and anxiety. So we are dealing with a lot. He was in an independent specialist school last year with loads of therapies that made us not pursue dx. Once we got his EHCP the LA moved him to a resource base at a mainstream school and it's been an absolute disaster. Because of his inability to cope and increased aggressive behaviours we finally broke down and got private dx. We knew he had ADHD but seemed mostly manageable until the school placement fell apart. We have asked for change of placement but that likely won't happen until next school year. In the meantime I am hoping the medication just helps us get through the remainder of the school year. Fingers crossed.

@krobhix20 I’m so glad you’ve found this thread useful. The meds can be incredibly effective and I really hope they work for you. For my son it’s made the difference between managing and not managing at school. Please keep posting if you want to as the guys here have an enormous amount of experience. You mention how much you are dealing with and I wanted to send you some Have you got DLA in place yet?

@MissHavershamReturns thanks for the flowers. we are expats so we don't qualify for DLA. Day 1 on 5mg went fairly well. Here's to hoping this is the right medication that we just need to titrate. fingers crossed

@krobhix20 - welcome to one of the kindest and least judgmental boards on Mumsnet.

our DS is nearly 9 and been on Medikanet for nearly 3 years. We have had to up the dose as he has grown. It has saved our family - and probably him too. He couldn’t learn without it and would have probably been excluded from school. I would love to have found a small private specialist school where they could build in therapies etc - but the ones we have tried to get him into they have rejected.

Please let us know how you get on why the meds / I hated the idea of medicating but for us it has been a game changer.

Hi @krobhix20 and welcome.

I would like to echo what the PP said in that mainstream for our DS has been the difference between managing and not managing. We haven't had huge leaps in attainment, which we initially hoped we would, but now, a year in I can really see how much it has helped him. He's average now in every way and I've never been happier to say that!!!

It's been a real journey for us all. We are on Equasym which is the same family as medikinet. We started on 10mg and are now on 30 but we saw improvements from day 1 on 10mg. My DS is 9.5

Can I talk weight for a bit? We seem to be better weight wise in that DS is putting on weight fairly well now. He's was 24kg in July last year and it took until September to get to 25. He's now almost 27kg and averages about 1kg every 3 months. How does that relate to others?

I make him a high calorie milkshake every morning (banana, gold top milk, yoghurt, protein powder and avocado), he drinks gold top milk with dinner and then he has a nurishment drink (365 calories!) before bed. That seems to work for us and we don't have to nag him that much about food so long as he has that.

@WesternEasterner very happy to talk ADHD and weight! It’s now my mastermind special subject as I know the calories in everything we eat and drink! Your drinks sound absolutely excellent and should hopefully do the trick.

In the first year of meds ds actually lost weight and we managed to get 1 kg back on him just before his 1 year mark appointment. That’s when we were told it had gone pretty wrong and he might have to come off. I think we managed a 6kg gain the year after that with obsessive parental support on increasing calories and protein. A fair bit of that was probably regaining what he should have put on the previous year. They were happy with that and while he’s never got above 15th centile for weight they said they are no longer clinically monitoring his weight.

What I think I ideally should have done from the start is check weight and height centile every month. If he’d started dropping centiles I should have increased cals more then. If tracking both centiles then obviously all is fine. What amount of kg/cm is ideal will obviously vary massively by age as I’m sure you already have in mind. How old is your ds?

@krobhix20 how did things go yesterday?

I'm interested in the weight stories. Most of the kids I know with ADHD seem to be overweight rather than under & DS seems to be the exception.

My DS, at just turned 13, weighs about 35kg, which puts him just at or even under 1st centile 😱 He is & always has been a skinny thing, much like his dad & his younger brother. He eats a lot & anything at all (literally, blue cheese & snails are his favourite foods 🤣), so he is getting the nutrition he needs, it just doesn't stick to any of them. I have been worried in the past & started a thread on here at one point, but the medics we see are not concerned. One paediatrician flagged it up & sent him to GOSH for a battery of tests, but they came up with nothing & as DH was with us, they saw him & just said DS is clearly like Dad, so no problem.

I should add we have not noted any change in appetite with meds. Either way he is always ready to eat something 🤣

@confusedofengland has he always been at or under 1st centile, including before meds? It’s great that they think he’s ok at that weight.

Yes, he has always been around that weight- except as a toddler, when he had the baby chub. But even then he was just the size of an average child!

@MissHavershamReturns

Thanks for your thoughts and experience!

So when DS was born he was 25th%ile. He rapidly went up to the 50th and he stayed there until I stopped weighing him when he was 2.5. He was a right chubby little toddler but at about 5 he slimmed down. I looked in his red book and I have one random weighing in of him when he was 6 that put him at just under 25th%ile and when he was initially weighed at his first ADHD appt he was there too. I've actually gone back through his little red book and plotted the last years weights. He has dropped just a bit lower a bit at times towards the next %ile line but he's now back more to where he was and is generally following the same line.

It's such a hard balance to strike as I've always been really big on having a healthy attitude towards eating and food. I think we are just about there now. I absolutely hate nagging him to eat. I really don't want him to develop an eating disorder or obsses over calories etc.

We were giving him massive breakfasts of beans/toast/bacon but that wasn't sustainable for us as we need to be out the house by 7.45 some mornings. DS loves his cereal too and being a creature of habit he just found it hard to adapt and breakfast was taking ages. We also found that after his huge breakfasts he wasn't eating anything at all at lunchtime and we were just nagging at him all the time. Now he has a normal sized breakfast that he enjoys with his high calorie milkshake. He has a small lunch - probably half to a third of what he would otherwise have - and a normalish sized dinner. His can of nurishment and his morning milkshake probably give him around 700 calories which I think makes up for any shortfall.

Oh and we always have pudding after dinner now (much to DS2's delight). I have a lot of rice pudding that I bulk made in the freezer with clotted cream 😆, full fat yoghurt and ice cream. He is a dairy fiend!!!

I do find that eating speed is an issue (speed of anything really as DS has a very slow processing speed). So he doesn't have big meals, but does have lots of snacks.

still no side affects so far. he seems marginally calmer and more generally tolerant but also wondering if that could be placebo. he participated in football class yesterday and made it much longer than normal and was frustrated by less. my hope is that this is a good sign we can up his dosage. its obviously still early days as it's only day 3. but feeling hopeful.

I don't think that's a placebo 😊 I think that's a good sign. We had immediate small improvements even at a low dose.

That sounds really positive 😊

It always strikes me as a SEN parent how much we celebrate these victories, which wouldn't even register to parents of NT children. Well done!

Sounds like great early signs @krobhix20 . Keep us posted if you would like to! Was yesterday much the same?

Yesterday was much the same. Today has been a disaster sadly. Today is the first day he hasn’t been able to watch tv all day. So in fact he seems really stimulated today. No other side affect tho, no headaches, nausea, etc. Curious to see what tomorrow is like.