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!

Hi all!
First time poster, long time follower. Thank you ALL for your advice, comments and feedback over the last year or so. It has truly been invaluable!!
My DS6 started Medikinet XL a week ago and is on 10mg now (day 3 of the increase). He's luckily not had side effects which has been such a relief. 5mg did nothing really and we had too really look for things that were better which wasn't much.
10mg we have seen improvements but there seems to be a crash (type thing) at 1-2pm and I'm not sure whether this is the meds wearing off or just the ending of the quick release. He has stopped chewing everything (thank goodnesss), his focus is so much better, less tantrums, stopped mindless eating, not fidgeting and definitely more calm (less bouncy). However at 1-2 he returns to all of these things for about an hour or so then settles again until about 5pm and then it's fully back to normal behaviour. Is this a normal response or should I get him reviewed and changed. We give him his meds just after 8am. So we get a good 5hrs of stillness and focus and then it's a slow but noticeable change to his normal adhd behaviour. Any advice or thoughts would be appreciated. As he's 6 our prescriber doesn't want to increase his dose so I'm thinking would he better on fast-acting medication (but several doses) as opposed to the XL. Thank you guys. This thread is a LIFE SAVER.
And YES I would LOVE Christmas ALL. YEAR. LONG!! 🤣🤣

Hi @YearLongChristmas , welcome to the thread! I know I was a long-time lurker here while waiting on diagnosis.

I think my son does have a bit of a drop off like that.

I don't know about whether a series of instant-release would be something the prescribers would consider, you'd need to ask. It's tricky if you can't go above 10mg as that gives less room for tinkering with different pills across the day!

Would multiple pills work for you logistically? My son has just started a lunch time top up but I think it's a bit hit -and- miss if school remember to give it.

It sounds as though you're seeing huge improvements already though which is great.

Thank you at @rhubarb84 ! Yes logistically it will be a nightmare as I don't trust his school to consistently give the top up - they have been awful.
Today was his first day at school and no noticeable difference noted in his handover book which has been deflating because we've definitely seen an improvement. Feels like this journey to the right dose might take a bit of time. Have spoken to prescriber and they want him on 10mg for 4 weeks before deciding on best next option. So here we go...

Hello!!! Your little one sounds like mine, have a look at my past posts where I'm pulling out my hair!

DS is 6 and is on 10mg a day. We notice a dip about 3pm ish now. Oh Christ the chewing!!! I give up!

@AndrewGarfieldsLaptop haha thanks hun....i feel you for sure. I will look back at your posts! When do you give him his meds in the morning?? I'm trying to figure out best time to get the best out of the 10mg.

Hello! I give it around 0745-0800 and it seems to last the school day. However the issue we have is that DS's school are obsessed with him sitting throughout assembly (he's not allowed to miss it...!) and the medication doesnt kick in until after 9am. His lunch goes untouched, but by the time 4pm rolls around he is bouncing everywhere and eating everything.

We just had a meds free day ... Fucking hell it was SO hard. He would not stop. I know it's nothis fault but sometimes I think that he must have at least some control?!? Surely!! I lost my rag with him by 8am and he was better after that, he always is once we've laid down the law but he will push and push and push until I loose it. No amount of gentle parenting works. I actually think he's getting worse?!? But maybe he always was this hard.

Anyway.... He ate 🤣🤣 so job done.

I know some have said that a fast release at lunch time helps but I don't trust our school either, they cocked it up almost daily before we went on the day long meds.

5 days into 40mg for us, he's been a lot more steady in the days but there have been some emotions in the evening. Not as bad as the 20-30mg jump. Seems such a high dose.

@HauntedPencil I think lots of us were very concerned about a top up being given at school! Actually to be fair our school have been amazing at giving it and it’s just become a set part of the day. You can also buy medication timers which sit on child’s desk and go off when medication is due and I know a family who use this at their dd’s school. The timer goes off and child immediately takes timer to staff to get the medication.

This type of thing https://www.medicalsupplies.co.uk/tabtime-timer-medication-reminder-with-8-alarms.html

@WesternEasterner I hear you and this is exactly what we see too! It can be a bit of a nightmare on med free days and it sounds like you had quite a whirlwind there which can be really hard as a mum. Sending lots of sympathy and hoping next time will be easier

@MissHavershamReturns do you find it easier after a few days med free? Or is it always just the same? I honestly can't believe he used to be that bad, I'm sure he wasn't?!!?? Based on yesterday's experience we'd only be able to have med free days if we let him have a whole day of playing on his iPad/Nintendo with absolutely no demands at all on him and even then it would be hard. His executive functioning skills are just SO SO poor that everything is really hard for him. He spent a good 20 minutes yesterday looking for his headphones and they were where we told him they were. He literally couldn't process what we had said enough to get himself to the right cupboard. Obviously there was then a meltdown. One of many yesterday...

For meds at school my son has a cheap Fitbit with an alarm 😊 works really well for him.

@YearLongChristmas welcome to the thread and I know it’s really hard but try not to be disheartened by no initial signs of change at school. We saw some improvement at home even on 10 but school saw absolutely nothing. In the end on the right dose they did see a massive improvement so hang on in there.

It might be worth asking about trying a 5 mg top up if you keep seeing signs of a major med crash or medication rebound as they sometimes call it at 1-2pm. We had this too and a 10 mg top up has completely eradicated the issue and now he manages really well at school in the afternoon. I think someone on here is trying a 5 mg top up.

@WesternEasterner the first med break was by far the worst and definitely seemed adhd symptoms were worse than before we medicated. After that it does seem to get less bad over time when you have the breaks.

For us it seems to now be mainly tearfulness if we do a break of 3 days, but also of course we do see a return of all the adhd symptoms as otherwise he wouldn’t need the meds! Eg jumping on his bed etc

@WesternEasterner Meant to say the Fitbit alarm is a great idea for top up timer!!

Best post ever !!

small percentage is the rebound, but the fact that we are used to seeing them differently certainly doesn’t help 😂

@MissHavershamReturns thank you for this. I did optimistically think that improved behaviour at home would translate to school. Answer....No. so onwards and upwards we go.
@AndrewGarfieldsLaptop thank you re; timings. That is when we give the dose too. I will discuss with his prescriber re; a top up dose then speak go my manager about this. I just can't be dealing with another argument with his school who are supposed to be outstanding with SEN. I beg to differ!!!!
Tomorrow we do a meds break so it will be interesting to see Jekyll/ Hyde behaviour and compare him on meds. But like someone said I think we'll have that "god was he really this bad?? How did we cope" moment! Wish us luck!!

From my experience they are way more symptomatic on meds then off meds than before ever having meds but settle down - and I think it's probably an element of us forgetting how bad it was. The other day my DS was literally ricocheting off walls 🫣

I know a lot of kids are a bit better in school and mask and hold it together and explode at home but we've always been the absolute opposite. DS finds it super hard to keep it together at school (although he loves it) than home. And I suppose there are more demands on them there

This is a great idea. We are trying the 40 XL atm but id we need adjusting something lien this may help.

@HauntedPencil we had the same which our paediatrician said is in her experience quite typical of ADHD as it's much harder to mask and often masking is next to impossible. She said with ASD it's usually the other way around and schools can't see the masking.

It made sense when she said it to me! We don't know if our DS has ASD yet. We find out Monday!

@WesternEasterner that would make sense, I'd imagine for things like poor focus it must be near impossible to mask. Looking back at how DS has been over the years, I seriously doubt he would have had the awareness to even attempt to mask.

We had our meeting earlier this week with CAMHS, they're referring DS for some anxiety management programme, acronym for this is LIAM, anyone heard of this before?

Also met with private psychiatrist who diagnosed DS and she thinks that the 30mg methylphenidate sounds like his ideal dose so we're sticking with that.

I think masking with ADHD might be a complex and undiscovered area. I’m pretty sure I do have ADHD myself, but while it’s very hard for me to sit still in meetings I’ve basically taught myself to do so, by forcing myself.

My younger ds also has ADHD but we’ve been told he doesn’t meet the medication threshold as his is viewed as “mild”. He’s not been dx with combined (which oldest has) but with inattentive only. His levels of hyperactivity at home are off the scale, but he’s very very focused (hyper-focused!) on good behaviour at school, so he sits in his seat there.

He told the paed that it’s very very hard to sit still but he does because he knows it’s the rule. I had a chat with the paed after this and he said because the hyperactive side is only seen at home he can’t be recognised as combined. I feel this is leaving lots of youngest’s struggles ‘unseen’ in the paperwork, eg no movement breaks recommended as it’s “only” inattentive”.

I do honestly think some kids/adults with ADHD can learn to mask, but my oldest certainly can’t.

I truly believe that no frigging way could DS mask. He can barely tell a fib successfully. I wish I would mask once in a while at school to keep his teachers happy 🤔

We have a meds review with our doctor in the next week. I'm convinced that he's going to switch medication; the 10mg works but it's not fantastic, but we have good days and bad. Today is a great day as we have done home learning and we have listened. Wednesday was a bit of a wobble day.

Can I ask the hive mind for some advice? DS takes 10mg in the morning only, but now has a gymnastics club on Wednesday 1545-1630. I'm considering giving him a 5mg top up at lunchtime to help. Would you do the same?

@AndrewGarfieldsLaptop yes definitely. We do this every day. Top up at 2 sees us through till 6 as it lasts 4 hours. I'd do a 1/2pm top up if school are amenable to it!

There is no way my DS can mask either and that's why he struggled so much at school. But @MissHavershamReturns I think you are right that ADHD masking is very complicated. There are definitely things DS taught himself to help him with his ADHD, a big one as avoidance and changing the subject if there was something that was hard or he didn't want to do.

But for him the impulse control is the hardest bit, my DS just cannot stop himself from saying silly things, moving or asking ridiculous questions. He can't stop! He couldn't mask it if he tried and I believe he did really really try. He also would have struggled to remember to try 🤣🤣🤣