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!

@LoveMyADHD thank you for your thoughts, may I ask why you stopped guanfacine? Tell me about your DC, sorry I haven’t read whole thread. We did try atomoxetine but years ago…

and if guanfacine is crunched I guess what I’m saying is it is dangerous/ likely to produce awful behaviours or just not effective? I would have hoped the latter but Google talks of calling 111 and observation etc, really worrying! We give the big glug of water but sometimes DS sneakily conceals it and then you hear the crunch (with other meds, like his melatonin) … I do my best but would never want to think it was a total disaster situation if it happened…!!?!

Yeah if he's not reliably swallowing whole i dont think these are advised. I found even the ones you were allowed to break apart made the drug too strong.

@Mrburnshound oh god!!! 95 pc chance of swallowing whole I’d say?!?!

@Mrburnshound have you experience of this??

Oh it ll be effective super effective, it’s like giving the whole dose within a minute rather than spread within 24 hours … if he can’t do it properly I’d change meds as this is truly dangerous

we stopped guanfacine as it wasn’t making him focused , just spaced out, but there was calmness for sure

we re on Atomoxetine now which is great, but there are food restrictions around breakfast time to consider which is really annoying at times !

Just a quick message to everyone to say thanks for being so supportive on this thread. It’s great that we are all able to support each other with our meds questions on here. I can see we are close to the end of this thread and I will start a new one when that happens.

@AnEnigmaAndHope please let us know how your appointment goes this week. Hopefully they will be able to help you move on to a new medication which suits him better.

@carriebradshawwithlessshoes DS couldnt swallow anything initially so we had to open up methelphenidate but it spaced him out so he had to learn how to swallow which is now fine.

Maybe email your DR to check if the crunching is a massive issue

We tried guan but it didnt do anything (but see my post above about Prinitive reflex therapy if it's of interest)

I actually bought empty capsules of amazon and practised with DS swallowing different sizes.

@Mrburnshound thank you… I’ve read up the thread now. Many years ago we did a lot of therapy to remove primitive reflexes that had been retained, we used a charity BIRD. It sticks in my mind as they were such a lovely group of people but it did nothing to help DS despite exercises on the floor every night. I wonder if the therapy is the same across providers, I guess it must be.

We have just been prescribed Atomoxetine, as stimulants did not agree with dc. I am praying this will work out. We weren't told about appetite, but nurse did say nausea is a side effect at first, but should subside once the medication settles. May I ask how old your child is, and if it increase focus and restlessness at school? I have lost hope at this point!

Oh wanted to tag in @MissHavershamReturnstoo, thank you for asking how we got on!

@AnEnigmaAndHope he’s nearly 14 he’s been on it since last summer

appetite might reduce a bit but not as much as stimulants

it helped with calmness, anxiety, OCD and emotional regulation, a bit with focus but not as much so we re still using stimulants but much less dosage and so the combination is good for school

how old is DS, what dose is he on and what brand has he been given

don’t panic if it doesn’t work , you can play with doses and with with empty/full stomach as well as different breakfasts (for us it works in empty stomach for half hour , lots of whey isolate protein and nearly zero fat )

it’s a very specialised drug and most people give up as they re lacking research and what to do to make it work ; Reddit is your best friend here 😎
do let me know if you have queries , good luck x

@AnEnigmaAndHope I am so glad to hear you now have a plan. Please keep us posted on how the new medication goes if you would like to. Definitely worth keeping fingers crossed, because I never would have thought we could get to the much better place where we are now if I look back to when I started thread 1. We still have rocky days of course and ds will always have AuDHD, but with the right medication he has been able to navigate things much better. Sending an un MN hug in case that helps and will be hoping this mediation does the trick now

@carriebradshawwithlessshoes we hsve just been doing brushing so far (face and back) with an eyeshadow brush. It took a good 3 months to see any results.

Weirdly ot has made the adhd medication less effective sometimes as it really disrupts his nervous system

We have had much less dysregulation since ds started OT, which is funny because I was very sceptical of it. We haven’t done the reflex stuff but I know someone local who did it and felt it helped.

Interestingly that doesn’t sound at all like the exercises we did re retained reflexes. I wonder if different providers do different things (confusing?).

Im part of a FB group on it (most people are in the states) and they dont seem to be doing the brushing either. What exercises did you do?

Weirdly when I do the face brushing one I get a spine tingle in my back -

It’s a little while since we did them but from recollection they involved predominantly DS lying on the floor on his back, we (it was a 2 person job) would rotate his legs and arms in a particular fashion. Open and close his fingers. There was from recollection some exercises with him on his front with his head to one side and one which involved crawling with the opposite arm and leg moving forward on each crawl… no brushes or external objects were involved

Just to say to @AnEnigmaAndHope that my teen is AuDHD and 9 was a rough age. It does get easier.

I posted ages ago about being at the end of my tether with DD cocktail of drugs. I reduced the Venlafaxine (now 225mg) and Medikinet (20mg with option of 10mg top up). The book suggested here was enormously helpful, particularly on the issues with different brands. At the time DD had three different Venlafaxine tablets of different strengths, and we get different brands each month for each tablet, so it was useful to understand the issues that may cause.

We are in the run up to A Level exams but once exams are done my aim is to reduce the Venlafaxine as much as possible. Does anyone have advice on doing this. Previously it didn't go great, but part of me wonders about just doing it slowly and stealthily without fuss. Although by then DD will be 18, but I will still be in charge of meds!

Also in the spirit of sharing in case this is helpful to anyone whose child/teen mixes up day and night meds ... we had a box with a sun/moon side for day and night and teen mixed them up a lot. Which wasn't great when one half includes melatonin, and the other antidepressants that you can't dick about with.

After years (yes, I am the slow learner here...) we just bought two different boxes. Blue for night meds, and white for morning. Never been mixed up since!

@HorseAreBetterThanHumans DS is 10, how was DD at that age when you say things were tougher? Do you think that was just a tough age generally or because you hadn’t got the meds right back then?

apologies if mentioned upthread but does anyone else’s DC take epilepsy meds? Alongside adhd ones.

Aww thank you! We haven't tried it yet as ds was a little reluctant after how badly he reacted to the stimulants. We thought a little break was best to avoid medication refusal all together. We are starting him on the none stimulants this coming weekend, and I am feeling sick thinking about it. I know the first 48-72 hours are the peak time for initial side effects, and then acouple of weeks after, and it will take time to build up in his system before we see the full effect. I am so so nervous!

Thank you so much for the reassurance. I feel like there is a lot going on at this age. Ds is struggling with rhe transition to an older child; he is clinging to all of his baby things, and asking if they break, do they still sell them.
It has gotten to the point where I am feeling nothing will work for him, but I have to remind myself that this is a none stimulant and shouldn't have the same effect the stimulant had, especially with the acid reflux and shaking legs etc.

I am so pleased you have finally found the balance for your dd. I worry about ds's future, he is such a bright little boy, and I want him to reach his full potential, but much more importantly, I value his wellbeing. The things he says sometimes, it is heartbreaking.

Is it Atomoxetine you’re trying ? If so it works on two separate brain areas , on the first one (norepinephrine) it’s likely you see improvement immediately like we did

good luck x

Yes it is Atomoxetine. That is really good to know! You read so many horror stories about medication online, because it is always negative experiences reported, and positive ones not to much, so thank you!

When I have been reading about my son's particular profile, a drug called Guanfacine is coming up. I am now wondering if he should have been prescribed this instead of Atomoxetine!