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!

@MissHavershamReturns it was so nice that people saw the difference too!
I'm unsure why there was a supply issue. Not really notices a difference between the medikinet and equasym to be honest.

And regarding the after school 'zoomies' @AndrewGarfieldsLaptop , my son has a top up for exactly this reason!!

Honestly I swear the clock goes to 1715 and that's it, it's backflips off the sofa, doing the can can with his baby sisters legs, endlessly TALKING... it's like everything is ramped up. I took him on a 3 miles walk the other night as I was like, mate I need you to be tired!!

Hi everyone. It's me again with a question. My DD is now on 5mg immediate release Medicinet due to go up to 5mg x 2 in a couple of days. She's not noticed a lot of difference in her focus etc. but she seems to have quite a bad comedown. So 4-5 hours after taking it, she's in bed with sweats and shakes, in tears and even some intrusive thoughts which is really scary because she has a history of MH issues. This goes away after a couple of an hours and she seems to recover completely. Does this get better in your experiences? Or is this going to be us and actually meds are not for her? Thank you!

@Hapagirl48 I’m really sorry to hear your dd is having this kind of crash/come down from the meds. My ds was taking an 8 hour XL version and was metabolising it fairly fast and already having a comedown by 1pm involving tears and anger. This meant we were advised to have a 10 mg lunchtime top up even when he was on a 10 mg XL medikinet slow release in the morning. The top up really helped us and smoothed off this crash so those kind of symptoms are no longer something ds is having.

I would definitely raise with the consultant

@HHapagirl48 , is a prolonged release and a lunch time top up an option? May help with the crash.

Hi everyone. Hoping you might have some advice. The last time I posted this thread I didn't receive any replies.

My son is on 50mg now. If you don't see any significant changes, can that mean they don't have adhd? Yes he's more calm but he still can't remember to do anything.

@MissHavershamReturns @NurseP Thanks. I have a phone call with the consultant on Monday and will ask her about these options. To mitigate the crash I gave DD a double espresso (she’s 17) mid afternoon and that seem to help and maybe it’s just getting used to it all.
@Munchies7 our consultant said that meds work for about 80% of ADHD people so it doesn’t work for everyone. I keep hoping it’s going to snap her out of her behaviors like in the Barbie film but not yet 😂

Munchies, is a different type of medication an option? There are so many types. Hope you can find something that helps.

@Munchies7 welcome to the thread. I’m sorry you didn’t get any replies last time. My ds still really struggles at times and there have been some really difficult months when I’ve struggled to keep up with replying.

I wonder if you might find it useful to read the med medication book linked in my op, which covers what to do if meds don’t seem to work. If there’s not much effect then it can be better to try non-stimulants if you started on stimulants or vice versa. Some people (iirc around a quarter) will not respond to one type anywhere near as well as the other.

How old is your dc?

It might also depend on the cause of the not remembering- eg my ds is dual dx with ASD and executive functioning challenges are part of ASD. Also working memory challenges can impact remembering to do things . Has a psych checked his working memory at all?

Just popping on to say hello, had a holiday ans it was noticeable that DS was super symptomatic when we got to a new place for a day or two but did well.

Good luck to all with secondary school prep and I hope it's all going ok

Thank you for your responses. His working memory was poor compared to other elements on the wisc-v. He scored 4 years ahead for everything except working memory which was at current age. Not sure what to really make of that. His working memory is poor but so is/has been my parenting.

40mg seems the max he can do without side effects. Is esquiem worth a try, how is it different to medikinet?

Morning everyone. How are we all doing? Last week I wrote here in tears that our increase from 10mg>20mg was so bad I was crying. This week we have turned a corner.

I was exhausted this week from the drug increase and other personal problems. My mum took DS for a few days, and gave me a rest with the baby. DS is back and this morning is the most relaxed morning I've ever had as a parent. Normally by now he's tearing about, we have been up since 5, everything is a mess. Right now we have been sat in bed watching TV, cuddling and reading. I can't believe this. I'm really chuffed.

@HauntedPencil we found exactly the same thing with ds on holidays and he also settles after a few days too. He is dual dx and definitely struggles with change and transitions.

Thanks for the secondary transition support!! Feeling scared and just hoping all will be ok at least after a fashion.

@Munchies7 great to hear working memory average at least. I really understand how tricky it is when they can’t remember to do things as one of my children in particular really struggles with that.

Equasym is also a methylphenidate based stimulant I believe, although I’m not a hcp and have no expert knowledge whatsoever on meds. Just a mum muddling through on medikinet. I don’t know if anyone else here has switched to Equasym from medikinet but we have never used Equasym.

I would think if you aren’t seeing an improvement on a certain dose of methylphenidate based medication then you might want to ask your consultant whether they recommend a further increase or a switch to non stimulants. We’ve never used a non stimulant but I know others on here have.

@AndrewGarfieldsLaptop so pleased to hear you are having success with the meds. It’s such a miracle isn’t it when it works! Great that you are enjoying a more peaceful morning than usual. We found concentration on reading was much better than before after the medication

Thank you. I'm not up for non stimulants. I don't mind stimulants on the basis they are metabolised daily and you can stop at any time. Maintaining the therapeutic window of a non stimulant is going to be too much to manage and I don't like how you're creating a permanently different person.

@Munchies7 you may find the NICE guidelines useful:

”Medication choice – children aged 5 years and over and young peopleRecommendations 1.7.7 to 1.7.10 update NICE's technology appraisal guidance on methylphenidate, atomoxetine and dexamfetamine for ADHD in children and adolescents (TA98).
1.7.7 Offer methylphenidate (either short or long acting) as the first line pharmacological treatment for children aged 5 years and over and young people with ADHD.

March 2018 – this is an off-label use for children aged 5 years. See NICE's information on prescribing medicines. [2018]
1.7.8 Consider switching to lisdexamfetamine for children aged 5 years and over and young people who have had a 6‑week trial of methylphenidate at an adequate dose and not derived enough benefit in terms of reduced ADHD symptoms and associated impairment.”

“1.7.9 Consider dexamfetamine for children aged 5 years and over and young people whose ADHD symptoms are responding to lisdexamfetamine but who cannot tolerate the longer effect profile.

March 2018 – dexamfetamine is only licensed to treat ADHD in children and young people aged 6 to 17 years when response to methylphenidate is clinically inadequate. It is not licensed for children and young people aged 5 to 17 years who have responded to but are intolerant of lisdexamfetamine.See NICE's information on prescribing medicines. [2018]

1.7.10 Offer atomoxetine or guanfacine to children aged 5 years and over and young people if:

• they cannot tolerate methylphenidate or lisdexamfetamine or
• their symptoms have not responded to separate 6‑week trials of lisdexamfetamine and methylphenidate, having considered alternative preparations and adequate doses.
• March 2018 – this is an off-label use of atomoxetine and guanfacine for children aged 5 years. See NICE's information on prescribing medicines. [2018]“

https://www.nice.org.uk/guidance/ng87/chapter/recommendations#medication

We crossed @Munchies7and I can completely understand your concerns. When the next review comes up hopefully the consultant will be able to help weigh up the needs versus the downsides of the meds. I know there are people on here who’ve had great success with the non-stimulants and some families they haven’t worked for, just like the stimulants.

No idea why I’ve gone bold

We have switched he'd from medikinet xl to equasym xl. They barely the same drug but medikinslet releases more at the start than equasym. I think it's something like medikinet releases 50 % of its power in the first hour and then the other 50 through the day. And equasym is more like 20 then the remaining 70. I could be talking crap bit I'm sure that's what I was told . Either way, we didn't really notice a difference between them.

@NurseP I think you are right about this. The different slow release formulations release differently. IIRC it says in the meds book that medikinet was designed in Germany where school ends earlier than in the uk so it has a predominantly morning release although it continues to release in the afternoon and so the XL 8 hours is expected to last 8 hours.

Hi, I've not been on since 5th August, hope everyone is ok

My DD 7 has been back on Equasym XL 10 mg this week (after a 2 week break for holidays). I've had a bit of tutoring done by a local school TA this week who knows DD well, (my 9 year old has ASD and an EHCP so I need a bit of extra help with the both of them as they are both behind...thanks DLA!)

She's really noticed that DD is concentrating and focusing more, DD also used to ask random questions during reading ie "do you have a dog?", she's stopped this now and her reading seems to have really improved (it used to be very frustrating!)...and the constant chewing

I'm happy so far, we have a med follow up on Saturday online (virtual) and she will be back at school next week (she also has a speech & language assessment next week too, for her stutter) I will update how all that goes

The 20mg just isn't working for us 🥲 we have had so much lack of impulse control this week and lack of attention... I feel like we are back at square one. I've never cried so much.

@AndrewGarfieldsLaptop I’m so sorry to hear this and sending you an un MN hug and lots of sympathy

We saw no really noticeable change until 30 so if an increase is likely then try to keep the faith if you can. The meds book linked in the op says that adhd medication has one of the largest effect sizes of any medication you can get. In other words at the right dose an improvement is highly likely. When do you next see the consultant?