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!

@Holiday2018 you probably saw this link in the op which I found very useful for ds: www.tewv.nhs.uk/about-your-care/practical-guide/adhd/weight-loss/

Just read that NHS link. Thank you!
DS has lost some weight - not loads and still in a healthy zone but he looks skinny and don’t want him to lose too much.

the rest of the family are all overweight 🤦🏼‍♀️ so we’re all trying to lose weight while encouraging him to eat as much as possible!

@MissHavershamReturns and @LoveMyADHD thank you so much for replying it means so much to have all this advice! Yes I saw that amazing link and have been trying to follow it along with the big breakfast ideas- I say trying as due to DS’s PDA/ demand avoidance we have to be very careful how we present food. Often he will just say no to whatever we offer, if we just present food sometimes he will eat it, sometimes he will get very cross/ dysregulated as it’s not what he wanted ( this was pre medication but seems much more sensitive now). We are always walking the tightrope food wise. I thought we would just be able to offer/ give him more of the ‘treat’ food he likes but he’s even refusing them. 😥
He will usually have his smoothie every morning so that’s why I was thinking to add the protein powder. Because it’s a safe food I don’t want to mess with it too much in case he stops eating it….
We are trying the dinner at 8 pm tonight though so will see how that goes 🤞🤞🤞
thank you again

@Holiday2018 bless him!

what types of foods he likes? Just to have a think on how to incorporate the powder

also just FYI any eating disorders (lack of hunger or food avoidance disorder, are associated with lack of zinc.. do you give any vitamins at all? X

@LoveMyADHD He loves milk which is why I was thinking to try the whey protein as he seems able to stomach milk, but maybe the powder is much stronger? Was thinking I could get a chocolate one and try it in the smoothie or with milk. It’s hard to say other favourite foods- it’s all hit and miss here. This morning he had 3 spoons of cereal and said he was full, I asked him to try to eat more and he got very upset that I was forcing him to eat when he can’t. Had to give him
the meds anyway. I have been leaving plates of biscuits etc next to him. Going to weigh him tomorrow and see where we are.
That’s good to know about the zinc thank you, we do give him vitamins in his smoothie.

Bless such a shame cause these stimulants will make appetite worse

try to find an opportunity to put that protein powder anywhere you can (i.e cereal)

also YouTube short have fantastic ideas for high protein breakfasts or snacks , I get all my ideas from there .. I would really up that zinc to see if it helps with appetite - zinc also potentates methylphenidate so it’s a win win 😉

@Holiday2018 it sounds like you are doing brilliantly with your planning.

We found a lot of it is about timing of when you offer foods. In the end we actually stopped bothering offering treat food etc from after breakfast to 7 pm as in our case ds could only manage small portions at lunch and dinner and had no appetite for snacks. We got the weight back on solely by increasing breakfast and adding the extra meal closer to bedtime after dinner.

At the “second dinner” time he did have appetite and we found offering tiny tempting morsels worked well at these times. A little yoghurt, then another little yoghurt, or a packet of crisps, then a little bowl of ice cream, followed by a hot chocolate. All offered individually rather than given at once, so he didn’t get overfaced. We were really keen not to stress him out over food so had to be really careful how we put it when we were offering. You will definitely find what works for you with trial and error, as we did.

Wishing you lots of luck with this and thinking of you. Our ds was quite underweight and we managed to get him back on track, so it can definitively be done

As I think I said in the post I pasted in again further up, the clinic told us to start unhealthy and not worry about healthy foods initially, then we worked back to healthy if that makes sense. Ice cream became yoghurt, crisps became oatcakes, but we did several months of unhealthy first, just to get some weight on as he was losing weight quickly.

A quick update from me as dp and I were talking about meds last night and reflecting on how it has gone. We can’t believe that our AuDHD ds who started on meds in Year 5 is now in Year 9 and what a change in those 3.5 years on the medication.

Poor ds was barely managing in Year 5, also very difficult for his school to manage and not coping emotionally at all. He just finished Year 8 and his much better school report showed what a massive journey he has gone through in that time! Much of it has been the meds, some is better support at school, some is us learning better what works for him and accepting the situation for what it is, and a lot of it is just down to him and the huge efforts he’s made to learn to manage his emotions, not always successful but improving over the years.

We managed to get him back to a good weight after huge struggles with appetite on the meds and he grew ok and now in his teens is tracking just below where his height was predicted to be at age 2, so there doesn’t seem to have been any major impact on height.

I hope this gives hope to someone reading this who may be where we were back in Year 5. We still have very tricky days both at home and at school (including autistic meltdowns) and challenges come up every week, but overall the direction for now at least is positive.

Our main goal is just to keep him mentally and physically safe. Then helping him through as many years of school as we can, taking each year as a win.

I hope everyone else and their dc is having a good or a least doable summer? I would love to hear how everyone is doing.

Great to hear your update on this long running thread @MissHavershamReturns.
I only joined here a couple of months ago when my daughter started methylphenidate. She’s on 30mg mefylnate xl after increasing from 10mg. She definitely feels more focused but does feel the effects wear off by early afternoon. The clinic suggested we could try a small dose of immediate release in the afternoon so we’ll agree to that at her next review. They also mentioned they could prescribe melatonin for sleep. I wondered what peoples experiences are?

I’ve picked up some good tips on here about the book recommends and ensuring enough protein. It was suggested on here to ask for branded medikinet but I’m not sure it’s worth asking for a switch of brand? Is it likely to last longer? Obviously everyone metabolises differently but would be interested in thoughts.
Thanks again for the advice.

Lovely @MissHavershamReturns love your positive update (would love to meet up at some point btw !)

so about 5 weeks ago we started Atomoxetine and have to admit it’s life changing . Our home life has improved so much it’s so hard to describe the ups and down we went through before

there are no melt downs, he’s totally regulating any odd emotions. Even if he walks away from something he doesn’t like (like doing work) he goes has a think, then comes back and does it

He is not robotic like with stimulants in any way, he’s just a normal teenager , so I noticed we do more parenting and so I fear school won’t like it as were used to a robotic boy saying yes all the time, so that’s the one thing we’re worried about but OMG what a medication is that ! We honestly cannot live without this

there is a lot is research that a parent needs to make with this drug , it needs a very specific protein and food otherwise it won’t work and there are lots of side effects you need to tackle but honestly cannot recommend it enough

hope everyone is doing great !

So lovely to hear @MissHavershamReturns

DS has been on meds for almost a year now but before going down the (private) meds route we tried: moving school; seeing an Ed Psych; nearly a year of OT support and lots of (very helpful) adaptions in school.

This year (since starting meds) seems so different - much reduced sickness, better friendships, and much easier parents evenings! I used to be on edge anytime an email came through from school but it feels like our whole family life is now so much easier!

My son is still the same creative, loving and wonderful boy but just much less anxious because he's not constantly in trouble at school or with peers.

Really hope he copes with Y10 in September and good luck for the new year to all of you lovelies xx

generics might be different to branded meds in slow release drugs (not really other types) so yes that might be a reason. NHS though doesn’t t like prescribing specific brands as more expensive

but it could be also that 30mg is low for her weight or that her body metabolises quickly
that’s quite a common issue tbh
many here have been getting a top up around 2pm

wrt melatonin many kids take it when on stimulants . My DS used to be on it too but now he’s on Atomoxetine so sleep is good no need for meds x

DD used to be on the Concerta XL which she would take at the start of the school day and would last until the end, but definitely finds that the Medikinet XL does not last as long, so she takes one dose in the morning and a second after lunch which is slightly smaller to get through a secondary school day. She will then take immediate release to get through homework. However, she does metabolise the drugs very quickly (and as a result is on a quite large dose) so it's very much person-dependent.

And yes, melatonin has been a great help for everyone here!

Thanks. We’ve increased again today to 40mg mefylnate with a plan to increase to 50mg after two weeks (she weights about 53kg) so we’ll see how that goes. Next plan would be to add small short acting in afternoon and melatonin also in reserve. We started meds in school hols so we’re not in the usual routine. It will be interesting to see how she gets on at school. No other special needs in the mix, just the ADHD and I’m sure medication will help as we are now going into GCSE years. Thanks everyone for the advice.

@Jedstre DD literally went up two grades in all the subjects she didn't enjoy after about 2 months on meds! It will definitely help with GCSEs. And make sure you get all the other accommodations for exams asap.

Thanks @diningiswest. She was getting rest breaks for exams last year. What would your advice be please?

Has anyone has any experience with their child being prescribed methylphenidate, stopping it due to negative side effects, and then being prescribed Medikinet as an alternative, as the brand may have different side effects?!

We’re on day 3 and the side effects are exactly the same, and we tried the last one for 4 months, and I refuse to do it as long this time.

ds' DR wanted to go straight to amphetamines after methelphenidate didnt work.

What are your child's side effects?

@Mrburnshounddid you completely change the medication?

My DS is also autistic so not sure if this affects the medication, but whilst taking the medication he is really angry and emotional, he’s having meltdown after meltdown. It lasts all day until the medication wears off then he’s back to his usual happy self.

I’m pretty new to all this and I’ve found the articles on additude really informative. You can also sign up for free webinars and the two I’ve been to have been excellent.

www.additudemag.com/category/explore-adhd-treatments/medications/

@Billythebear my child also has ASD and had epic meltdowns on meflynate (drug 1) after drug 2 (methelphenidate) although his behaviour was fine he was too sleepy so the doctor changed to dexamphetamine (so yes changed drug)

We are only 10 months into our journey so not sure we are settled yet!

DS has been on dexamphetamine for a while now. Behaviour is completely fine but attention vacillating between daydreaming and being super focused.

I actually doubled his morning dose (with permission) but that didnt make much difference.

Speaking to dr again next month, dr is very conservative atm as he wants ds to settle into the new school.

BTW has anyone found magnesium supplements in pill form? ds doesnt like the gummies