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!

@KTC40 what wonderful news and please do post about how your med review goes today. It’s just great when you can see the effects, isn’t it! I know they say lots of academic improvements can often be seen with the medication. Very impressed to hear about the reading and communication!

Pls don’t feel disheartened.. 20mg doesn’t do much generally

We peaked with 30.. how old is your kid? X

How long he's been on it? Same for us DS did need the 30 for any noticeable improvement - for us he will have a few weeks and period where his impulse control is off again too (we think when he's excited and possibly over tired) even on the meds - the summer hols don't help being out of routine. Hopefully you'll see a difference when you tick up again. Don't lose hope, they all need different doses.

Lovely to hear from you @LoveMyADHD and @HauntedPencil ! How are things your end?

Ok thank you - DS very bouncy this week but in good spirits. Hope things good with you and wishing luck for next week!

Can I quickly sound a secondary start klaxon? I should look back for who is with me on this and will do later but would definitely help to know I’m not alone in being TERRIFIED

@HauntedPencil we crossed! That sounds good that all ok. Bouncy is very much part of the wonders of ADHD isn’t it? Can relate! Thanks for the good luck

Hey lovely!!!

all good, haven’t given meds the whole 8 weeks of holidays and I am exhausted 😂

DS also put on 7kg in 2 months so super happy 😎

how’s you’re lovely boy? Can’t believe school starting next week!

DS went back to school Monday started getting a bit "extra" towards the end but I think will benefit from the routine.

Wow the whole summer! Well done to you @LoveMyADHD how did you find it, and amazing results on the gain.

How have the secondary school starters got on? Best of luck for a smooth transition

Morning everyone!!! DS is back at school and I am thrilled to say that he sat through an entire assembly. The first in 2years!!!!

He's having 2 x 10mg doses a day, but I'm having to go in at lunchtime to give the second dose.

Oh wow! That's amazing 🤩

At certain parts exhausting 😂

I had to do it though so that he puts on weight 😫

well done for DS starting school with no drama!

Massive well done!

did you not want the school to give the meds?

Back to school with no issues here. Hope everyone is OK. My bot is a bit under the weather on and off, I think he has a big tooth coming . He usually gets like this with a tooth. He has not been sleeping brilliantly but probably the heat.

We decided not to give our son his medication over the holidays. Our OT at the local clinic was surprised and believes we should be giving this to him every day. we only tend to give it to him on school days so he can focus. How often do other parents give medication to their kids? The last time we gave the medication at home he just seemed zoned out which shocked us so we decided to no longer give it while we're at home.

We have been giving medication every day, this was the recommendation from our prescriber. My son's main issue is focus at school, but disorganisation etc at home is an issue too. So the idea was that by being medicated at home, he would have chance to experience more focus at home and learn more skills. We've stuck with that, as yet side effects such as loss of appetite haven't been enough of an issue to make us reconsider. Also the dose he's on doesn't make him a zombie, and he's still very ADHD even on the meds... he'll get lost between the table and the dishwasher...

@LoveMyADHD!!! Hi! Well school were very concerned by giving a controlled drug, and you know when you give someone a job and think that this would be easier to do it yourself? It was that. So I nip in at lunchtime to give him his meds, a high five and I'm off.

We arr now on 10mg and 10mg and this week has been great at school, despite the heat. I'm so proud of him.

I give it all the time, and that's only on my son's request. He's 6 and I asked him if he wants a break at weekends and he told me that he likes his brain better with his medication.

We only give term time and weekdays only.

last autumn we were giving it constantly due to 11+ prep and not only he didn’t put on weight but he also developed tolerance to the drug so we had to constantly increase dose

Also he’s 11 he really needs to grow so I am quite conscious of this

Ah I see!

can I ask by the time the first dose runs out, does he get his appetite back? So does he have a proper lunch there?

how come you re not trying slow release?

We are all year around - it seems to work better for some kids than others my son has lost weight but still ok and struggles hugely with coming on and off - whereas other kids are loosing too much weight and don't have such a reaction. Consultants seem to have different viewpoints too, mine is an all the time advocate. My son has a big eat in the evenings and that seems to keep his weight lower but ok for now.

@LoveMyADHD hello! So DS has a modified released tablet at 7am, and then the fast release at 12pm. He's responded really well to it.

Also his appetite in the morning is shocking, but by tea time it's back!

How is everyone going with secondary start? I know there were a few of us starting Year 7!

Very up and down here and also feeling the pressure to keep pumping in the calories. We have our appointment in November and have managed to put 2kg on him since Feb, but he’s only 5th centile weight wise for height. Desperately trying to keep the weight going up, but it’s not at all easy.

I also think the dose is now too low. He’s been on 30 since August last year and I can see impulsive behaviours creeping back in and I’m sure he should ideally be going up to 40, but can’t see how that could ever be achieved as I can only just get him to ear enough on the current dose.

Has anyone experienced the dose seeming to be too low as the kids put on weight and get taller? Any advice welcome!

Hello! I've been distant but reading things in the background... things have been really good for us and our DS. He is 9 and has been on 20mg of Equasym XL since June. It's changed his life and he's so happy.

But we are having some problems with weight and I'm interested to see what others do/think/experience.

DS just never seems hungry anymore. Not even when he isn't medicated. Everyone says to feed them up in the morning but even this is a battle, he's just not got an appetite. He will eat a decent breakfast but I can't feed him up, one bowl of cereal and a small yoghurt if I'm lucky. He sometimes has an apple for his snack at school and then he nibbles his packed lunch. Half a sandwich and a pepperami if I'm lucky!! Sometimes nothing at all. After school he'll have a snack but will never ask for it. Dinner we have to really encourage him to eat. We obviously don't force it but we have to basically remind him to take a bite. He will happily just sit there and chat without eating.

I've been supplementing with a calorific milkshake once a day and have just started giving him a nourishment meal replacement thing in the eve.

Since he started his meds in April he hasn't gained any weight or grown even a cm 😭. He's not lost any weight but compared to his peers he seems to look small and weedy. He's almost 9 and they are sort of growing and changing in a way that he isn't.

I was always under the impression he would eat when the medication wore off but he just never seems hungry, not even first thing before he's taken anything!!

We medicate every day all year round because that's what the paediatrician recommended and he has such weak executive functioning skills that I feel he really needs it all the time. He agrees and doesn't want to take any breaks. But perhaps we need to? Would taking a break for a week over half term really make a difference? Or taking a break every Sunday?

Do other people find appetite is this bad even when the meds wear off? Are we perhaps on too high a dose? Or perhaps is the medication itself that doesn't agree with him?

I really really don't like that every meal time is a struggle and that I'm gently having to force him to eat at all. I don't want to solve the ADHD but set him up with issues around food. Previous to this he was an excellent eater and we were able to have no rules around food, he could as much or as little of things as he wanted and could leave things he didn't like. Now we can't do that as he'd eat nothing. So it's become "just one more bite!" 😭 which I hate.

All advice very gratefully received.