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. I'm very new to this. My son has started on medikinet xl. He has some tics. Has anyone else's child got or had tics and how did you help your child get rid of them. I'm worried the drugs will make them worse. Thank you

@Munchies7 We didn't experience tics, but have seen DS have increased anxiety and more emotional, it got 'less' as he got used to the medication. It may mean you need to give it more time or increase the dosage slower.

I have an update regarding DS. I had a school meeting today, and they have said that on the lower dose (15mg) they don't notice any discernible difference, maybe a slight increase in ASD behaviours. I find this really odd; at home we see a big difference on the weekends, much less hyperactivity, not making silly noises all the time, much better back and forth conversation. At his weekend hobbies he's gone from lying all over the floor, turning around, fidgeting, staring at the ceiling when the instructor is explaining something, to sitting straight and calmly for 15 minutes. He also seems much more positive in his self-esteem. I don't understand how they cannot see a difference, so I'm a bit baffled... anyone experienced differences between home and school?

My DS was always way worse in school so maybe the improvement isn't as noticeable - it's a bit weird though since you've seen a good improvement in his clubs

@Plro this is EXACTLY what we had. No difference in school at 10, but we could see plenty. We could see more improvements at 15, more still at 20. School saw zero until 30. Like you everyone saw more asd behaviours and this is common as I understand it. The adhd masks the asd charactistics, so when they are medicated and calmer the asd is more apparent

@Plro at 30 school see huge improvements - should have said!

@Munchies7 sorry to have missed your post. There is some useful stuff on tics in the excellent meds book I linked to in the op. There is a lot of medical knowledge on prescribing adhd meds where there are tics.

Can I just ask if anyone has gone back to the NHS after going private? I know I joined this thread with my youngest DS in mind, but my DD was being treated for anxiety and depression awaiting a referral to the psychiatrist to see if she needed medication or not. We were told it would be a minimum of 3 months before she was seen in March and she was due to start her GCSE’s before she got seen. So I asked her gp to recommend someone private so she’d be in a better place and they ended up diagnosing her as adhd. She’s been on medication and has made it through her exams without any issues or upsets. But an appointment has now come through to be seen by the nhs psychiatrist (gp told us not to get off the escalator). But our private psychiatrist will pass her back to shared care and nhs medication via the gp if all is well with her next month. We really had to tighten our belts to pay for this, but it’s been worth it to see her relaxed and focused and in a much better place.

Sorry, that’s a bit rambly…..but I think you get the idea!

@HauntedPencil @MissHavershamReturns Thanks for the reassurance, I was feeling quite deflated after the meeting yesterday, questioning whether or not we'd made the right decision to medicate.

On another note, DS has mentioned 3 people at school he is friends with and has been playing with regularly - this was unheard of before medication, he was very lonely. It's done wonders for his self-esteem and happiness. Could be a coincidence of course...

@OnePlusOneEquals We are in the process of being transferred back to the GP/NHS after private diagnosis and treatment 🙂

I had the same experience - he did manage to have a couple of friends but he was really quick to get cross and impulsively hit sometimes so he did annoy a lot of kids and also came home complaining about kids all the time - I can't remember the last time he did that. It's made a lot of difference to his relationships and because he's generally not as cross with other kids he's having a happier day.

We haven't had our NHS appt through yet so we are paying for 6 monthly private clinic which is £175 a time - however these past few months we gave been getting our prescriptions via the NHS so that's now our only cost. DS would love to continue to see the private consultant so will have to see how things go!

Just wrote a long post and lost it!

In summary very excited ds seems to be putting on a bit more weight - 37.7 kg today and that’s just under 2.5 kg heavier than he was when we saw the consultant 4 months ago

Just found this thread again - I’m posting so I don’t lose it!
DS on 20mg Medikinet for a while now, happy and calm at school (though whistling quite a lot!) but would appreciate thoughts on revision and exams. He was recently given 25% extra time & rest breaks in his school exams for the first time. It’s supposed to compensate for being distracted during the exam but tbh his results were much worse than usual! It seems a bit counter intuitive to give a longer exam for someone who loses focus but his SEN team say it’s normal. I asked him whether having a longer exam made the zoning out worse but he says he preferred having more time. The results indicate he was not able to concentrate particularly around the middle of the papers. How have people found extra time?
Also revision - how to support?? He went to his room to ‘revise’ saying leave him alone, he knew what he was doing etc etc and then confessed after exams that he wasn’t able to revise at all! GCSEs next year so getting a bit worried as he’s a bright boy academically but just can only motivate himself to revise the night before (which works for small term-time tests not lots of exams)! All tips appreciated.

hi,

sorry to barge in, but im close to breaking point. my son is 8.5yo, diagnosed last year with adhd and high functioning asd, he was put on methylphenidate 5mg twice daily in august, in november we asked for them to be increased, at the start the change was INSTANT in him, he was like a different child, it was amazing seeing him and his older brother actually liking each other! but instead of increasing them, they changed him to the slow release capsules, and the only side effect was that he wouldnt sleep until literally 3am every night, then we thought they just werent helping impulse and focusing etc at all, so we asked to go back to the instant release around March.

let me tell you...that was not the right decision! ever since then his anger, aggression, violence, has been ten fold. he's trashed my house, swears constantly (neither me nor his dad swears) and he has recently started wetting himself (?sensory) but i have found that he will do it out of spite if hes given a row, either that or he will threaten to run away 'because it will make me sad'.
then i see glimpses of my little boy who is sweet and caring and it breaks my heart.

i have read a lot on ODD and he fits every check box for this or PDA.

he is now on high rate care and low rate mobility, and has an appointment in 2 days to rv meds etc. before March he was hard work, but nothing on this scale.

i should note that around March he switched from a mainstream school to a supported learning school - i know the transition could have something to do with changed behaviours and the regression with toileting etc but he is honestly loving his school, they have much more support for him and he is participating and doing more than he did previously at the nurture room in his old school.

anyone in a similar situation and can advise on meds that worked? or with ODD kids that can tell me there is a light at the end of the tunnel? because right now there are times i dont want to be in the same house as my baby, and this breaks my heart because i love him to death and i am trying my absolute best.

sorry for the rant!!

@MissHavershamReturns that IS good news!!!

@MamaClause sorry you are having a hard time. My son is nearly 8 and takes equasym XL 30 in the morning topped up with an instant release methylphenidate at lunch time.
Can you request an urgent meds rv? Maybe a different med entirely would help? I know the change will likely be difficult.

@NurseP thank you, yeah its been rough lately for sure. We had a few of the slow release Equasym left from his last prescription and we tried them to see what happened and def noticed a slight improvement, although we were straight back to the 3-4am falling asleep. that was on 20mg.

We have an appointment on Thursday, at this point i would take anything that they thing may help. We havent tried non-stimulants, but i also saw a lot of people in the US saying that clonidine and risperidone helped in similar situations but obviously i cant see them trying either of them at this point for us.

i also totally understand that the ADHD masks the ASD and can def see more of the ASD traits lately. The swearing, spitting and just general bad behaviour is draining me so badly. hopefully a change in meds will help at least a little bit.

That’s so crap!

I personally wouldn’t overanalyse if it’s ODD, ASD etc I have seen my own kid react like this, for me this is exactly what ADHD is about, their reaction to not meeting expectations

can I just ask, fast release (Medikinet ?) used to work but not anymore ?

If this is the case its very very likely some of the core nutrients in the body have decreased (sadly meds so that to magnesium and zinc) and he might need some overall vitamin support

also the only problem with slow release is that fact that he can’t sleep? Can’t they prescribe him melatonin?

are you private? Process seems slow… a good consultant would probably have this resolved in just couple of weeks

sending hugs!

Mama I am sorry to hear things are so tough and really hope the med review helps - I've had a lot of success with melatonin not sure when DS would fall asleep but he was exhausted constantly so definitely would suggest if you haven't tried it already

Ah mines a bit younger and only recently having support at school so not near exams yet - sorry to hear it hasn't helped

Great news!!

Thank you!

the methylphenidate instant release worked when he was initially started on it, but instead of increasing it when we asked they gave us the slow release. I def think he lacks a lot of vitamins due to picky eating and sensory issues with food so hopefully get some supplements online soon to add in.

I asked for melatonin but they refused and gave me a sleep diary. Because the one night a week the kids go to their dads he doesn’t have sleep issues (he’s been at school all day then sat in the car for over an hour at 7pm to get to said dads house, yeah he’s gonna be a bit more tired than at home).

tonight is tough, he went out for 10 mins on his scooter, I thought he’d get some energy out, but nope, door knocks with a lady that thankfully I know, he’d stood by the road waiting to cross and threw a stone at her car. So she shouted and chased him round the village 🙄.

tiredness could be a factor because he’s only getting around 5 hours sleep a night on average too. But the language and violence are the worsssst. I feel like the worst mum ever these days

Why can’t they go back to quick release ?

you re not private are you? I’m shocked they don’t give melatonin although this has such an impact on him

the build up of continuous issues makes him react like this

would you consider going private to get this sorted ? You need someone who ll be changing meds every week depending on feedback