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 wishing you strength and well done for getting the medication. Your post has really helped me feel a bit calmer about any potential shortage as I’m hoping if I drive around I can get it somewhere. I hope you continue being able to get it.

That's really interesting to know. Everytime this has happened we have stopped immediately so maybe we ought to push through

@AndrewGarfieldsLaptop agree, it could be worth sticking it out for a few weeks if you can, to see if it settles? It definitely happened to us when he was on 10mg at first, not two weeks in but about 5 days in.

I found my DS was really flat for 2 weeks when he first started his meds, then 2 weeks later he was back to his normal lively (but now focused and less bouncy) self.

Could you go back to 10 and then try 20 again over Christmas? Timing it so the 2 week meltdowns happen when he's at home?

So DS was off his meds yesterday and he was fine really. Definitely less focused and more bouncy but we had no meltdowns or bad behaviour really. It was easy to spend the day with him which I'm sure you'll all understand was not always the case!! Lovely yes, but easy, no.

He ate really well, back to normal which was reassuring. I suspect the fact that he doesn't eat in the evening means his top up is too 'good'. I'm going to experiment with taking it a bit earlier in the afternoon or possibly not taking it all. It may even be that he needs a smaller top up dose.

It has been incredibly helpful is seeing him unmedicated as he has his long awaited NHS autism assessment next week. 🙌🙌 Prior to his ADHD diagnosis he saw lots of professionals. Some felt he definitely presented with autism, some were sure the autistic 'traits' were just his ADHD. I am now inclined to agree. Yesterday his eye contact was all over the bloody shop and he was talking so much that he just wasn't listening to what other people were saying. I feel that this meds break has been really helpful 😊

Now I just need to work out if they want him medicated or unmedicated for his appointment.

@MissHavershamReturns I'm glad it helped you feel better. Remember it is just shortages, not a complete lack of them. If we get desperate we can share the region we live in and what we have managed to get. I'm sure I'm not alone in saying I'd drive a long way for his meds if I needed to 🤣

@MissHavershamReturns interested to hear what snacks you do for DS at bedtime?

I'm going to count DS calories this week. It's soooo hard doing all this on the background without wishing to stress him out. I do not want him to end up with disordered eating because of this 😬 I try and not talk about it around him at all.

@WesternEasterner these are our typical bedtime snacks:

4 oat cakes with peanut butter say 140 cals
unsweetened fruit yoghurt (collectives brand) say 100 cals
A little fruit or veg - maybe half an apple or half a pear, or some carrot sticks
Packet of crisps (as recommended in ADHD leaflet!) maybe 70 cals
unsweetened hot choc with full fat milk say 150 cals

@WesternEasterner other things I have given:

A whole meal bagel with a little butter or with smoked salmon

Plain toast fingers (half a slice is 50 cals)

I am not a dieter myself so not cal focused and didn’t tell ds about any of this until we reached a point where he was obviously needing to eat more or meds would stop. Dr him self addressed it quite openly which I was in two minds about. But he understands he needs to eat a bit more than he really is bothered about eating.

I always start with the healthiest bits and move on to what he sees as the ‘treats’ which makes him keep going. I finish with the drink as he finds that easier.

@MissHavershamReturns thanks for all the ideas on feeding.

We do now have to encourage DS to eat at some mealtimes, but at other times he seems to eat well. But I've looked back at his height and he's only grown about 1.5cm in the 7 months since he was diagnosed. So I think we ought to keep a closer eye on it.

We decided to do another med break this weekend, yesterday he was definitely more hard work than usual. But today he's actually been pretty ok. So I think we'll talk to his clinic about doing med breaks more often in holidays and weekends.

I had a meeting at school last week and the teachers said they could pretty much see the medication wearing off between 11:30 and 12 and then it all goes downhill.

Aargh, it's such a balancing act isn't it! I want him to sleep, and eat, and grow. So I don't think he can tolerate a higher dose. But I also want him to be able to learn, produce work, and not alienate all his classmates because he's being annoying, and that definitely isn't sorted yet!

Crisps in bed??? The crumbs!!!

no he has to come and have one downstairs @AndrewGarfieldsLaptop

@rhubarb84 it’s SUCH a balancing act and I have no idea if I have it right either!

My son has a crumpet in bed. Some nights he face plants it. His skin is very soft!

Hi everyone. Hope we are all okay.

We had yet another phone consultation with my sons doctor and we are now back to 10mg. Again, with the medication increase we notice two big side effects. 1) is the chewing; my son has a sensory issue with chewing and will chew anything and everything. When we commenced on the medikinet, this stopped. However this weekend it was back with an vengeance and I had to give DS his baby sisters teethers to help him. 2) is the aggression; we had a big episode over the weekend which made me realise that DS will be bigger and stronger one day, and I can't keep doing this.

DS's doctor suggested the 10mg, and if we go somewhere for the entire day and/or DS has something important at school, he can have a further 5mg top up. Doctor also suggested a medication holiday. DS is only 6 but he knows his own brain, so when I asked him he said no as the medication makes him feel better. I respect that.

Hopefully we will get there eventually. It's a lonely old process, isn't it.

It really is, @AndrewGarfieldsLaptop but I think that sounds sensible. My son is 9 and on 20mg so I suspect at 6, 10 would have been right for him too.

My DS has put on 500g 😍 drinking a pint of milk a day is helping. He also has a nurishment drink before bed which he loves. Basically we offer milk as standard at every meal and he laps it up. I hope our paediatrician says this is ok long term. We will also have the odd day medication free, perhaps once a week or once every other week. We have also decided at weekends to medicate later in the day, at 10-10:30am and encourage him to eat lots before then.

He has his autism assessment on Monday, not sure how that will go but we are almost at the end of our diagnostic journey!

Hi everyone, I’m glad I’ve found this thread! I’ve known for years that DS (13) has ADHD but we only went for a diagnosis (privately through Psychiatry UK) in July as several of his high school teachers were commenting that his poor attention skills were hindering his ability to carry out his work properly. He managed reasonably ok through primary school with some support but we felt we had to get him proper help before he got the stage of exams etc and it’s a long wait list here on the NHS AFAIK.

DS has been on Methylphenidate 30mg for a few weeks now. He says that he does feel a lot of the time that he focuses well, but other times can still become distracted. I’ve noticed that he’s calmer on it and not as silly as he sometimes can get if he becomes overexcited! His teachers have commented that his concentration overall is better but things are by no means perfect.

He developed some anxiety issues in the summer after being attacked by a fellow pupil outside school and I had hoped the meds would help with this, but it doesn’t appear to be doing so, maybe it’s still early days. I’ve noticed that he can at times be a bit ‘angry’ and hyper when the meds wear off, I’m hoping this will settle down soon too. If anyone has any words of wisdom that would be great!

Good luck at your Autism assessment! As the weeks go by, I believe that DS is autistic. Sometimes I want to cry. I worry about him so much and how confusing the world must be for him. Today he cried as he just couldn't ride his bike, no matter how hard he tried.

Also well done for the 500g gain! We found the DS is starving past 4pm so I offer "hobbits tea" which is a sandwich after tea. I've stopped packing a huge lunch for him at school and he's having sandwiches at school dinners instead.

That's a good idea about the milk @WesternEasterner , I think we'll give that a go.

We're on another meds break for half term here, and can really notice it. He's bouncing and spinning around and distracted and silly... But I realised that as well as not having grown much, he literally hasn't put on any weight in the last 7 months, so I think we need to try breaks.

Hi @nightwebs , that's good that it's helping at school. We haven't had issues with anger when the meds wear off but I know others on this thread have. My DS is 10 and is on 30mg, he's said it feels as though 'a dam bursts' when it wears off.

@nightwebs welcome! I have found this board really helpful and supportive with lots of advice.
Your DS’s path sounds v similar. Our experience has been that the Medikinet XL 20mg transformed his ability to focus on school. He’s not the model pupil and will still often join in classroom silliness but doesn’t instigate it anymore. His grades and reports are unrecognisable from before.
Meds have definitely reduced anger outbursts. It did take a while though (maybe couple of months) for him to be calmer after the meds wore off. Now he still has poor focus for homework (meds wear off around 4pm and we don’t top up) but he is a happy, relaxed boy with good friends. He doesn’t get riled up and aggressive like he used to. He used to always lose his temper in sport but just enjoys it now.
Im sorry to hear your DS was attacked. That must have been very frightening. Obviously I’m not an expert but Medikinet may not help with trauma related anxiety. Is there a school counsellor he could speak to?
Also, did you try starting on a lower dose? We started on 10, and are now on 20. We were told they can build a bit of tolerance to the meds and it’s useful to be able to increase.
Finally, I’ve messaged on the board before about this, but do keep close eye on his growth, particularly as he’s hitting a period of fast growth. Our son stopped growing at 14 at a shorter height than expected and his growth plates are now closed. There’s some recent medical study that the meds can close the plates prematurely.

Hi thanks for your replies.

DS worked up to 30mg from 10mg, proper improvement wasn't seen until 30mg. We are on the 8hr meds and like your DS @Waythroughwoods he's not great with homework after 4pm but we weren't keen to do the 12 hour tablet. He shares a room with his sibling and we don't want their sleep disrupted if he then struggles to wind down.

@AndrewGarfieldsLaptop silly question maybe but did you know there are now SEN cycling groups/lessons? The local county council might run sessions or your local bike shop might know. We were put in touch with an amazing man who taught both my boys to cycle and also taught a young man we know with quite a lot of movement issues.

@WesternEasterner good luck with your assessment today. We have had our ds dual dx and it has really helped him understand himself. I hope you get an answer that feels right and while the process was emotional we were in the end very glad we had instigated it

@nightwebs warm welcome to the thread and my ds is on the same dose as yours. We contacted the consultant agreed experiencing the same medics come down/crash and we so after one week we were prescribed a tiny lunchtime top up at 1.30 pm of 10g immediate release which has resolved this issue almost entirely. It just smooths off the process of it leaving his body so there’s no abrupt medication exit. Worth asking about now maybe?

“after experiencing the same medication come down” I meant! All our symptoms were starting at 2pm!

@rhubarb84 it’s so hard to know what to do with breaks/not breaks isn’t it!! Mine really struggled in breaks but then we need them to grow. Between Feb and Aug we did one whole month of breaks when all added together, which I hope will have helped. We have half term coming up so going to do a 3 day break but then a week at Xmas.

No I didn't!!! I'll have a look. He wobbles once and that's his confidence gone 😭

@AndrewGarfieldsLaptop I’m going to send you a pm