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!

The rebound here is awful. So much anger and swearing in the evening it’s unbearable. Son on 20mg equsym xl. Wonder whether we need to go up in dose?

@Thanksforthat so good to hear the Medikinet is working out for you now. It can just take some time to get through the side effects sometimes.

@sundaysunday2024 what an amazing idea with the chart a bed brilliant that the sugar syrup worked. Sometimes a short term fix is just needed as a bridge to longer term success without the fix!

@GC12345 so sorry you are having a bad time with rebound symptoms. We had this too so I completely understand. Have you tried asking about a lunchtime top up to iron out the rebound? This worked really well for us. School give it now on school days.

@LoveMyADHD Interesting to hear some people say not to mix anti psychotics with stimulants. It looks from the medication book by Prof Peter Hill as though it’s something that’s done reasonably often in UK child psychiatry and his book says it really can benefit many children.

@Custardslice3 the ADHD meds were a last resort for us too but sonetimes need must. How are things this weekend?

Sorry to hear the struggles some of you are having.

DS13 started ADHD meds 6 weeks ago. First month was on Concerta but now Medikinet (due to shortages). So far he has reported no effects, and the doctor has asked us to get feedback from school before our next review at half-term.

He's extremely tired after school (and is falling asleep really easily which is a big change). We're not doing them over weekends (as it's mainly coping with school that has been difficult).

Will keep you posted xx

That sounds really good @CompluterSaysNo! We also found that weirdly sleep in the longer term has improved on meds which might be because ds is much less anxious

Sorry I didn’t come back and respond to people’s replies - as I’m sure you all understand, sometimes life can be too crazy and my mental capacity too stretched to even manage to maintain a conversation, whether in real life or online.

Not sure I’ll manage to answer everything people queried, but DS is 10. @LoveMyADHD thyroid function was all fine, but ferritin levels were low. GP didn’t think it was something to be concerned about but prescribed iron supplements anyway, but with everything else I’ve not managed to start him taking those regularly yet (they are supposed to be 1 hour before food, which means they can’t be given at the same time as his other meds and we’ve not managed to find a routine that works yet with a child who eats constantly through the day!)

I feel a bit of an imposter on this thread really because I’m not really sure we should be medicating DS for ADHD; Psychiatrist thinks he has ADHD but not a typical presentation, but the particular ADHD type difficulties that are the reason for trying medikinet xl became much more prominent after he began taking Aripiprazole, so I’m concerned that they are a side effect of that, but it’s more complicated than just stopping the Aripiprazole. I’m just trying to find out as much as I can about all different options before seeing the psychiatrist again next week to make a new plan.

@Custardslice3 good luck with the appointment next week.

We also have complex meds regimes in the family (three people taking meds which have to be spaced out). A pharmacist really helped me actually and advised just going for it even if timing not perfect with the Vit D we’ve been prescribed - some times taking it even if not at a perfect time is going to be better than not at all. So maybe you could ask if it’s ok to take after snacks as long as not too close to a full meal?

Hi all, my 9 year old is starting on medikenet this weekend for the first time. Any side effects I need to look out for? She will be taking 1 tablet in the morning and one after lunch. Her weight is already low so I guess we need to watch that. Thanks.

Good luck @GC12345 and I hope it went smoothly yesterday without too many initial effects.

The medication leaflet in the packet will definitely have the fullest and most up to date list of possible side effects. BUT according to the medication book I have listed in the OP about 50% children have no side effects at all from ADHD medication - other than appetite this is now true for us.

When I started my dc on the meds a wise poster told me not to fixate on the first few days as we did have a fair few side effects then - including sleep issues, more emotional than usual and headaches. But all of these settled in our case after the first week or so.

My dc was also very slim when we started and in hindsight I feel I would have increased the calories in the early days to counter the appetite reducing effects. It might be worth considering increasing breakfast and dinner calorie content as often they are not keen to eat much at lunch on these meds.

I hope the first day has gone well and do keep us posted if you would like to.

I’m so sorry that was to @GG1986

Thank you for your reply, unfortunately we didn't start them this weekend as she had a vomiting bug! We are going to start next Saturday (nurse recommended starting at the weekend so that we can see how she reacts on them) we were told possible effects for first few days could be headaches, tummy ache and sleep issues. I'm going to spend the next week feeding her up as she's not eaten much this weekend due to the bug.

We have a meeting at school tomorrow to discuss any impact school have observed. DS is currently on Medikinet 50 and claims they are not doing anything.

Our clinician said they can increase the dose, but it's not worth doing this if there is no benefit at 50mg.

We have noticed he's going to school happier in the mornings and is sleeping better at night. He doesn't take them at weekends so we don't know how much they help with concentration/focus etc.

The good news is no side effects beyond decreased appetite and tiredness in the evening.

Hi, I have been lurking and reading these threads for nearly a year, and my son was finally diagnosed with ADHD in August. He is 10 years old.

He started on Medikinet XL 10mg for a month but that wasn’t doing much, although school said he seemed a little calmer. The psychiatrist increased the dosage and he has been taking Medikinet XL 20mg for 10 days, and we and school have noticed his behaviour is worse - he is more distracted and disruptive in class and he is now also emotional and grumpy on top of that.

I’m going to reread the older threads but what would you wise people do?! Should we persist with 20mg for a few more days and see if it gets better, or would a higher dose of Medikinet help, or should we go back to 10mg, or should we request a different medicine entirely? I’m so confused!

@bunnykitten do you give lots and lots of protein every morning ?

we give about 20gr in powder and 40gr in food every morning ; protein helps dopamine production so likely for Medikinet to work x

We upped the protein before started any medication, but not as much as 60grams. There hasn’t been a change in protein amounts (or appetite generally) between taking the 10mg Medikinet XL and the 20mg Medikinet XL.

It seems the 20mg is making the ADHD behaviours more rather than less, and I’m wondering if others have experienced that?

the higher the dose , the more the medication will try to keep that dopamine in the main area of the brain by slowing down dopamine transporters. That dopamine is not made by Medikinet , it’s made by the protein he’s taking . Higher dose meds will need him to produce higher dopamine by himself otherwise he ll have side effects

also there were a few reports here about concerta causing odd behaviours at the beginning but didn’t persist

for us when we had bad reaction it was either lack of dopamine (due to low protein) or drug not good for him

perhaps look into short release (long release has odd effects for some )

Thank you, that’s really helpful. I have emailed the psychiatrist with everything we and the teacher are seeing. I’ll update on what they suggest, in case of assistance to others.

It’s so nice to see what others are going through on these threads. I thought things would get easier once we had received the diagnosis, but actually it’s just the first step in what may be a long journey.

Hope nobody minds me poking my head in.

DD13 is starting 10mg Medikinet XL for the first time tomorrow.

Secondary has been a really rough ride for her and the SENCO is worse than useless. Asked for help at the start of Y7 and they refused to refer to CAMHS. Had to do all the legwork myself. Now in Y9, she's just gotten a formal dx. Really hoping meds make a difference because she struggles to concentrate in class and gets in trouble for talking and defiant behaviour. She also finds it incredibly difficult to get to each class on time and usually is 1-3 minutes late which is causing disciplinaries to rack up. It's been incredibly frustrating as a parent and I'm hoping the meds will allow her to focus - but I'm also worried about the side effects. It's nice to find a thread where people understand.

Hi my daughter has just started on 10mg medikinet and so far she hasn't had any side effects. We are only on day 4 though. Fingers crossed they help your daughter, I think sometimes they need to up the dose if it doesn't improve things .

Hi everyone - devouring this thread thank you for all your wisdom. My DS (6) has just been prescribed methylphenidate XL for the first time and we're going to start it towards the end of half term. Terrified about the initial side effects which are likely to be fairly pronounced as he's so young, I understand, and since he is also autistic, these are likely to include increased anxiety/agitation. Dr discussed non-stimulant meds instead but we agreed to try this route first. Has anyone else had experience of AuDHD DS starting age 6 please?

Good luck @Neurospicythree. For my own dc was the older primary years when started meds, but others on this thread have definitely had very young starters and will hopefully pop up to comment.

I can definitely share experience on AuDHD though - I’ve come to see my oldest dc really has autism as their primary presenting need and if you look back to my posts on thread one you will see that we struggled with quite a few side effects in the first few days. The medication book I linked in my op also refers to side effects often being significant for dc with AuDHD and iirc says “start low and go slow” for those dc for that reason. But for many dc the side effects settle after the first week or so and for my dc the meds have been life changing. He is in ms and doing well in secondary now and I believe that would absolutely not have been the case if we hadn’t started him on the meds.

Keeping my fingers very much crossed for you and please feel do free to post on what you see as you start if you would like to and hopefully we can all support you.

@GG1986 it’s great to hear the side effects haven’t been bad for your dc. They do seem to often start on the first few days so fingers crossed it’s a good sign that there is not much yet. How are things now?

@Scattery I’m so sorry to hear about the really tough ride that your dd has had in secondary. There is a lack of understanding across our society on how neurodivergence presents in teens and that gap really impacts them. I’m sorry to hear the SENCO has not been helpful. Hopefully the meds will help her now. Will they consider a reasonable adjustment on the disciplinary marks for lateness etc now she is diagnosed?

How have the first few days gone?

@bunnykitten I hope you got some good advice from the professional team. It sounds like you’ve had a really tough few weeks - such a rollercoaster for us parents with all this! How are things now?