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!

My DS11 is now refusing to take his meds again. I just wonder if we need to take a break from trying for a while. I was really pinning my hopes on meds helping to reduce his violent behaviours. I guess that it was a long shot given that he is autistic, has learning disabilities and developmental trauma. We're seeing the psychiatrist again in 6 weeks. I am hoping as DS has a named LD nurse at CAMHS that it might not be too difficult to try again in the future ...

I have only one more titration left before moving to shared care. Im thinking of trying concerta, we are on tranquilyn atm but have been previously constrained by DS' inability to swallow pills (he can now).

Tranquilyn is going well but DS can be a bit dreamy still.

It will be 5mg tablets thrice a day

@Mrburnshound how did you teach your DS to swallow tablets? My DS still can't and we have now gone through a lot of tic tacs and recruited different family members to help him. I am opening capsules and mixing in puree but he refused to take it again yesterday.

Tbh i got my mum to ask him to do it, he is always on his best behaviour for her so she stayed a week and asked him to take them everytime he needed them and now he's fine. But they are 5mg IR ones so very small, i think he would struggle with a capsule.

My son's teacher said she hadnt met an infant age child who could do it before so it really is tricky for the young ones.

How's everyone's kid and food. My dd is low in weight as lost lots with elvanse and never really regained it. Referred tk dietician now but having to have meds breaks through kids holidays and omg she's very hyper and just kicked of at me for eating her crisps (I hadnt)

Oh kids holidays ! Lovely already 😂

out of interest why did you stop Elvanse?

Is everyone taking a med break over holidays? Im not (tranquilyn IR, DS dr said fine to continue everyday but knows other drs disagree). I missed ds' 3rd pill in the afternoon yesterday and noticed ao much.

I was planning to not stop but now second guessing myself. When DS doesnt have his meds i question how i survived before he started.....

We try to reduce to one tablet a day (20 mg rather than the top up as well at lunchtime). I can’t cope with him without his medicine as he is so irrational and unreasonable without any medicine.

I too question how I would survive without it. Or how I managed before. I feel as though I am always shouting at him when he is not medicated.

Im definitely shouting a lot too when unmedicated as he just does silly things. Yesterday evening he was singing really loudly in the pub as he had missed his third dose. He's also much nicer to DD

He's only on 15mg in total but just worried about building a tolerance....

Sadly there will be tolerance effect ; they are abuse drugs they’re based on addiction , that’s how they work

but.. for some kids tolerance is built quicker/worse than others , definitely the case for us

also I 100000% have noticed that when not in meds he’s worse than before he was ever medicated, brain is altering temporarily , this is not how our kids are for sure. My kid can go to properly psychotic mode when he’s not on meds but after a few days off, he’s much much better!

That’s the problem with stimulants , pros and cons sadly 🤓

We’re not planning on taking a break as still in titration process and trying to establish the best dose.

However, we were unable to get the meds from the pharmacy so who knows…. the consultant has now issued a generic non-branded prescription so will try our luck sorting that out tomorrow.

Have others noticed a significant difference in different brands? Usually on Equasym XL.

Would appreciate any advice/insight. DS 12 auADHD has been titrating since Nov. We tried various flavours of methylphenidate, but didn't see any positive effects, only near complete loss of appetite, and weight loss. So then switched to non-stimulant guanfacine. Started with 1mg and are now up to 2mg. Appetite is back but we still aren't seeing any impact on focus. Titration has also coincided with DS being home from school with EBSA and autistic burnout, so I'm thinking maybe we should just stop for now. We have SENDIST tribunals next month and will hopefully move him into a much smaller school, which will hopefully help with the burnout. And then maybe we could try meds again once he's settled. Or maybe the change of school will be enough to help him focus better without medicating (possibly wishful thinking). He's really started to resist taking it each evening and I don't want to feel like we're forcing it on him.

Just wondering if this sounds like a reasonable plan or would we be better off increasing the guanfacine first to see if it kicks in at some point? Those who have tried guanfacine, did it take this long to have an effect? What would coming off the 2mg look like?

We have an appointment with our CAMHS prescriber in about 10 days.

@LoveMyADHD interesting about the drugs of abuse question. We really worried about this when starting ADHD meds. But my understanding now after reading the meds book linked in the OP is that while some ADHD drugs are definitely drugs of abuse when used by non ADHD users and eg amphetamines can definitely be abused, that’s not really true of the methylphenidate preparations like Tranquilin? The author of that book says that methylphenidate was invented as a blood pressure medication for a guy’s wife called Rita which became Rita-lina and then Ritalin. The meds book linked in the OP says that methylphenidate might have a value as a study drug but states that anyone trying to get a high from it is going to be very disappointed, which was quite a relief!

@chillberry our NHS paed told us that setting and class sizes statistically do help dc with ADHD, but that medication has a far greater effect on their progress, statistically in large studies. You are obviously the expert on your ds, so you will be the best placed to decide what would work best for him given his recent experiences. I think there could be
an argument for trying to get him stable on a working medication before starting a new school, but if he’s experiencing autistic burnout is there a half way house of waiting say three weeks and then starting just before tribunal, presuming you start him before tribunal, then the time it takes to get decision, final EHCP issued and then move to the new school will give him enough time to get settled on the meds?

I think professional bodies refer to abuse due to the fact that it’s turned into liquid and getting injected , or even taking intranasally and the effects are similar to cocaine especially for those not on ADHD ; very powerful drug and the effect is the same as amphetamine even though the mechanism is different

but yes it’s probably more innocent that amphetamines that mimic cocaine directly on how they work

i personally cannot imagine a life with stimulants , really hoping to try more non stimulants praying they work 🤷🏻‍♀️

Hi All,
Just look looking for some experiences from other mums, my son is 6 and has just been prescribed Methylphenidate. He’s also autistic, does anyone have experience with a child with ADHD and Autism on this medication?
Also, how long does it usually take to see the effects? He’s on the instant tablets at the moment, with the plan to move him on to slow release in a couple of months.
Thank you!

My DD - just ADHD - is on methylphenidate. My nephew is also on it and he is ADHD and ASD.

We had noticeably positive effects from the very first dose. 2 years on, she's now on 30mg slow release and would quite like to try another increase (I think the 30mg is pretty good). We've never had any negative side effects. She also wants to stop any breaks.

Nephew has done okay on it but nowhere near the same results we've had.

@Billythebear My ds has AuDHD as well and the meds (methylphenidate) have worked really well for him. If you want to read our journey I posted it in thread one which is linked in the op. It takes about two weeks usually for the initial starting side effects to settle and we saw some difference by then, but nothing dramatic until we’d reached the final dose which was 30 mg for us.

Another with an audhd child doing brilliantly on IR mephlinidate. Literally life changing.

My friend's child takes guanfacine, im interested in this as when DS' IR wears off hes back to hyper (he is not taking XL as it spaces him out). My dr is quite cautious so didnt want to add guanfancine as he mentioned something to do with thr heart (?) Is anyone else using both?

@Mrburnshound - we tried guanfacine - v expensive and had to pay for it privately. £200 for a month of supply. Put him on it for 2 weeks - no effect whatsoever.

Yes we were on both till recently but just stopped Guanfacine so that we try a different one Clonidine

guanfacine definitley took the edge off, the only problem for us it got him disengaged so his focus took a hit, no clue why

in two weeks we’re starting clonidine which apparently is more successful 🤔

Ah that's interesting. DS is classic unfocussed so this might not be helpful for him (mephlinidate is helping but i dont want to cancel out that goodness!) Ill be interested to hear how you get on

Yes will let you know for sure!

your doctor is right about the heart though, but I think the problem is there when you add certain meds in top like antibiotics

when you just take these two, the risk is low and lots of doctors prescribe both x

Hi, new posting on this thread. I wonder if anyone has any similar experiences as us… daughter recently diagnosed as ADHD (diagnosed autistic at 3.5, she’s 6.5 now) and we were given Medikinet XL. Worked up from 5mg to 10mg but school reported no clear improvement. Upped to 15mg and I couldn’t keep her on it any longer than a week to see if things got better. She was an emotional ball of anxiety, angry at everything and everyone and just completely not herself.

We have a medication review tomorrow. Wondering whether a different stimulant brand would be worth trying or if non-stimulant are worthwhile.

It may well be medication isn’t right for her right now and that’s fine if so… we are just at that EHCP transition review point and wondering if she can remain in mainstream, so had wanted to try it to see if it might help her focus.