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!

Thank you @MissHavershamReturns he was out for most of the day took the 10mg at 8 30 so assume it will have worn off around 5. I picked him up at 7 and he has been horrendous ever since and still going. He has always struggled with aggression but this is next level. He is supposed to be going for a sleepover tomorrow and i really can’t afford for him to potentially behave like this at someone else’s house.

thank you lovely, I think we did it more than they did it 😂

Doesn’t really matter if hypothyroidism is more common for girls tbh , it’s up to the individual and what’s worse is that the area in the brain that instruct the thyroid glands to work (neck area ), is related to the actual dopamine receptors

yes we went privately for a blood test (not expensive lab place , I can send you info if you like) and measured TSH, T3, T4. TSH over 3 might indicate a problem and DS has 5!

really really worth checking as thyroid causes all sort of issues including slow growth, stress, depression and zero concentration! xxx

Sorry I probably missed that by why did the consultant upped he dose? He wasn’t settling ?

if he had improvement since Xmas was this with 30mg?

@LoveMyADHD this is really interesting. I'm wondering if I should get DS tested. My mother has hyperthyroidism so it runs in family. And he hasn't really responded to any of the medications yet.

I'm going to give this guanfacine a few more weeks but if we don't see improvements there is at least another place to look.

Nothing to lose I guess especially if GP is being funny about it you can find a lab near you that does these

worth testing for parathyroid hormone too ; doesn’t directly impact thyroid but certainly impacts dopamine levels , lots of studies between this and adhd. Ours is low as well

good luck

I have just spoken to consultant who said that we experienced is unlikely to be side effects around 7 but more of a meltdown accumulation of other things ( being out all day, tiredness)
She suggested if it carried on, we can try and fast release 4hr to top it up at the end of the day move to a 12 hour one so we are going to give it another go tomorrow and see how we go.
I thought starting meds during half term was a good idea but remembered how much Ds struggles with half term and is always a nightmare so it’s making monitoring things even harder but we ll see.
Hoping he is a better mood tomorrow and agrees to take it.

Good luck! Hope it works out!

Hi all,
Wondering if anyone here can can help, my son is 5 and has an ASD diagnosis, and will be diagnosed with ADHD as soon as he turns 6 (which is the minimum age in our area), we had an appointment this week to get everything ready for when he turns 6 in the winter, and do the health checks needed for the dr to be able to prescribe the ADHD meds, but in the chaos I forgot to ask if the medicine is available in liquid form? Does anyone have liquid ADHD medication? There's no way he would take a tablet.

The liquid form is really expensive to buy (like £200+) and hard to get hold of. We have to crush DS's medication and give in either crunchy biscuit spread and/or calpol.

@Billythebear they will likely start him on Medikinet which can be opened up and sprinkled on something. If that medication works then it's fairly easy to hide.

Exactly as @krobhix20 says. Our son was just six when he started his meds. We were put on Medikanet and sprinkled it on his toast and at lunchtime, put it in his yoghurt. By 7.5 he was able to swallow the tablets fine (which surprised me).

We had to quickly switch off Medikinet to a tablet (intuniv) that must be swallowed and my 7yo also manages to swallow really easily.

Hey all

just came here to say it’s been two weeks since we ve been treating DS for hypothyroidism (2 supplements no medication, but first line of defense for most doctors ) and can’t believe DS has very little impulse, he’s just very calm, even his voice has changed. Zero telling off on behaviour

It’s so odd that am contemplating not giving medication this week but I don’t want to mess things up with school just in case

just for those who missed previous posts, after lots and lots of research, I got him tested for thyroid function but also parathyroid too (not connected directly with thyroid but impacts calcium levels - dopamine is not released without appropriate calcium). It’s a giveaway that DS is not as tall as others (I had to give specific height growing products to get any height)

anyway just adding it here , both tests are not worth much getting this tested in a private lab (although parathyroid more expensive)… really just worth exploring

just hope things stay as they are , cause with my luck …. 😂

@MissHavershamReturns @HauntedPencil FYI

sending love x

Meant both test worth getting as don’t cost that much 🤔🤔😂

@LoveMyADHD wow that’s amazing. You must be on cloud 9. I’m so glad your ds is a lot better. Has it been half term where you are? Has he been off meds anyway?

Quick question about medikinet XL 10mg
We are coming up to day 7 of the 10mg and supposed to be moving on to 20mg but i don’t feel it’s been successful so far. As it’s been half term I can’t tell much about the focus but his mood and impulsivity has been worse. He hasn’t been as confrontational and been more lethargic not wanting to engage and have a general negative attitude.
At the end of each day around 7pm he would have a massive unreasonable emotional blow up and become quite aggressive then struggle to wind down until about 10 . i know there is a rebound affect however im really not sure its that. So overall all we have seen is negative so far so really don’t feel i should move on to 20mg. Any suggestions?

Hey !

Yes just finishing half term, we never give meds on half terms or school holidays, not even weekends 😂😬

hope it lasts, if not I bet it’s again an issue in that area !!

just hope someone benefits from this info 💃

Did consultant say you should move him up if it doesn’t work or you should change meds?

did you try short release at all?

This is the first meds we tried. I told her about the first explosion on day 2 and that he refused to take it the following day but she seemed to say that by 7pm the meds would have been out of his system (if taken at 8 30 as it’s an 8hr one) so it could not have been a side effect and more than likely it was a combination of tiredness and other triggers so we carried on but the pattern seems consistent and his mood is not great and i haven’t seen my kind funny boy only an angry/moody teenager who wants nothing to do with me.
His 7th day dose is tomorrow but then it’s monday morning so won’t have a chance to speak to the dr before deciding if i should start giving him the 20mg from monday morning. Inclined to stop it and call her on monday to see what she suggests. i’m thinking even if school sees an improvement in his focus, the cons are so much stronger that we wouldn’t be expected to put up with it?!

Hmmm, your consultant is not listening!

I have a very different relationship with mine!

depending on kid’s metabolism side effects can stick around till late in the night ! Surprising your doc hasn’t mentioned this !

if you want me to privately send you my consultants details pls let me know x

Thank you that’s very kind. Just had a chat with Ds who explained how he feels and that there is an anxiety that is building up in him during the day and when the meds wears off it peaks and that’s when he has these big meltdowns.
He didn’t seem to mention any other side effects but i told him that i observed him being a bit grumpy and off and he said it’s because he is feeling anxious.
Told him i will speak to dr on monday and see what she recommends.

Fingers crossed she ll try other meds for you even short release

if you persist she ll listen 😉

Just joining here - hi everyone! My DD12 started taking Elvance today. Diagnosed with ADHD - mainly issues with concentration rather than hyperactivity. First pill at 7am and so far she seems like a different girl. Is it reasonable to think this is how it will be? She concentrated on a history essay for an hour this morning with no arguments or breaks which is just so far from normal I can’t quite believe it. Doesn’t want her screen, playing well with her sister. I cried my eyes out this morning thinking we might have made a breakthrough.

Absolutely normal but you definitely hit the jackpot as it seems it worked straight away

how come consultant didn’t put her on medikinet

well done to DD xxx

Thanks @LoveMyADHD Here’s hoping. DH has told me not to count my chickens. It’s only 1 day but it’s so tempting!! The consultants reasoning was that she has a long day - 8:15 at school and ballet until 9pm some nights, so she’d need a slow release.