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!

Hi all, I was wondering if anyone had any tips on sleep? My DS is so wired at night, taking around three hours to get to sleep and then looks so tired during the day. I'm going to ask for melatonin at our next appointment, but does anyone have any suggestions in the meantime? He currently takes 10mg Medikinet XL in the morning. Thanks!

@Mrburnshound the psychiatrist had said that he thought Vyanse was the best med for aggressive behaviours. I did wonder if he needed a higher dose or an additional med to combat the comedown because for the 6 or so hours it worked it did seem to help DS. However, he thought we better switch entirely- things had gone rather hideously wrong just before the appointment (my neighbour phoned the police because she thought DS had stabbed me).

Thanks for the tips re pill taking. We will give them a go later. We're going to the supermarket after school to get some more supplies.

My daughter was diagnosed with ADHD yesterday, which is a relief to be honest as I've strongly suspected it for a long time.

The nurse said medication often doesn't work for kids who also have autism (she's said this before) but I said I would like to try anyway. We don't have anything to lose by trying as she struggles so much.

Anyway she is going to speak with the paediatrician and see if he thinks it would be better to go straight to non stimulants. Has anyone else done this? I know they usually go for stimulants first.

I have a DD with ADHD and a huge number of her cousins (across 3 different countries) also have ADHD or ASD or both.

It does seem to be the case that medication works best in those who are just ADHD without the ASD.

All my relatives tried stimulants first, and those who didn't have a good response didn't do any better with non stimulants either I'm afraid.

If you haven't already read it, the book 'The Parent's Guide to ADHD Medication' covers all the different options and might give you some extra ideas.

Is there any peer reviewed evidence to support this? My DS also has ASD and the drugs have had a very strong reaction. ds' doctor said that kids with asd tend to react more strongly and is being cautious with the dose. He did say that stimulants arent great if the child has bad anxiety, which can be the case with asd but he didnt suggest there have been any studies to say that adhd drugs dont work because of ASD.

Im glad you got the diagnosis @xSilverandcoldx - if you can get stimulants would you want to try those first?

Update from me - i think ds' glue ear has returned so trying to resolve asap, his teacher said he can't really hear what she's saying. Annoying to have in the middle of titration!

It's not something I've looked into as DD has no ASD symptoms, but it was something we all noticed when we looked at how our various children have responded.

Those with ASD seemed a lot more sensitive and two had to completely drop stimulants very quickly due to adverse effects. Another has had an okay response but nothing like as good as we have.

There seems to be some research having done a quick google scan, but I haven't asked my siblings who may have more knowledge.

My doctor is a specialist specifically in autism and he advises that stimulants work well when an ASD child does not have major anxiety, but advises non amphetamines rather than amphetamines. He has worked for pharmaceutical companies too so has quite an interesting insight.

Im posting because the nurse in silver's case seems misinformed.

That's interesting @Mrburnshound. My boy has autism and the psychiatrist quickly moved him from stimulants (lisdexamfetamine) when his comedowns were so severe.

So now are challenge is getting him to take the non-stimulants. We had a practice with cake sprinkles and tic tacs yesterday evening. DD5 did find it much easier with a straw and can now take a tic tac like a pill (however, she doesn't have ADHD - as far as I am aware). DS did make some progress as he got the cake sprinkle down - he hadn't managed that before. Also he seemed to find it quite fun so I guess we will keep trying.

This is interesting thanks for your responses. I saw the book recommended further up the thread so I'm reading through it now. My daughter isn't overly anxious to be honest but can become dysregulated quite quickly if anything goes wrong so I don't know if that affects which type of meds are recommended.

Based on what I've read so far I don't really have a strong preference for stimulants or non stimulants as it seems to be a very individual response. I'll probably just go along with whatever they recommend to start with and see how we get on, with a view to switching if it doesn't work out.

I'm just so grateful she's finally diagnosed and at least we have some options for things to try. So I'm trying to balance staying positive without getting my hopes up too much either.

I have an autistic child with major anxiety (AuDHD) and weirdly for us methylphenidate has made him much less anxious, which has been a win @Mrburnshound

Hi everyone. My dd (8) was diagnosed with ADHD recently (mostly inattentive) following an ASD diagnosis 18 months or so ago. She's been prescribed Concerta XL (18mg) and we're now psyching ourselves up to give it to her. Now that we finally have it, it suddenly seems quite scary! She has previously had about a month of methylphenidate (Tranquilin) back when she was first diagnosed ASD as she was having some extreme sensory issues, but despite not having any side effects that we noticed, we didn't carry on with it at the time because it wasn't helping with the sensory issues. I think it's on the basis of this that her psychiatrist has gone straight for the slow release version.

I've read through much of the thread, and the old threads (but not all!), and this seems like a great place to get support and ask questions! @xSilverandcoldx it sounds like we're at a similar point in the process...

I've done lots of reading about what meds would be best given DD's ASD but haven't yet read the Parents Guide book mentioned a lot further up the thread - have just ordered it though so will definitely look up Concerta XL and have a think about stimulants vs non-stimulants.

We're thinking of starting over half term, but I'm suddenly wondering if it's a good idea. DD is in a relatively good place at the moment, although getting very easily overwhelmed by demands. I'm also conscious that her psychiatrist has said "mild ADHD" rather than the moderate or severe that would previously have been needed to get a prescription, presumably because she's not at all hyper or disruptive in school.

Any tips or tricks or general help with decision making welcome!

Hi @addwardrobe definitely sounds like we are around the same stage!

I've just finished the book and found it really helpful. We are definitely keen to try meds as my daughter has been diagnosed with inattentive -hyperactive type and can be pretty disruptive at school. The school are pretty supportive and she has a lot in place there already so we feel like there's nothing to lose by trying.

It's a tricky decision though if your daughter is doing well at the moment . I can understand why you might not want to rock the boat.

I had been wondering about best timings for starting too, a school holiday would be good.

Hello all,

My DS (13) is AuDHD and we started Medikinet in September. Performance at school really improved but he said he felt the meds made no difference during the day.

We switched to Elvanse in October and again he felt no improvement. We noticed side effects with lack of appetite and a big crash after school. He also has some instances of very low mood.

Unfortunately as we started in September he had mostly new teachers who hadn't seen him off meds so it was hard to get feedback on whether meds were helping.

We decided to do a trial in Jan of two weeks on and two weeks off. Consultant and SENDCO fully on board.

Feedback from teachers and SENDCO has been that on meds much less fidgety, better focus in lessons, less time spent in the SEN hub, less trouble with peers, better communication and better memory.

We noticed an improvement in morning routine (when on meds) but a very obvious crash after school (needing 1.5 hours to rest in PJs). Also appetite definitely suppressed.

We're back on the Elvanse now and have a follow up in a couple of weeks when we will ask whether there's anything they can do to help even out the "5pm crash".

Am relieved to have had such positive feedback from school as he is only on meds for school so we haven't seen much change and with him saying meds have made no difference I was wondering whether to give up and focus on support in school.

Hope all of your lovely children are coping well and you are taking care of yourselves xxx

Have others found that meds have helped with peer relationships at all? DD has friends but finds social stuff tricky and I think she's very reactive so there's always a lot of drama.

My DS is less reactive to school friends, but he also has asd which affects him mostly in SpAL so haven't seen an improvement as he can never think of what to say to other kids.

That's great that your DS is less reactive @Mrburnshound - that gives me hope that DD will be a bit calmer with her pals! And thanks @xSilverandcoldx - the book has just arrived - will try to read it this week so we're ready for a half term start if we decide to do it. I think although DD isn't disruptive as such, she's definitely not easy as there's always quite a bit of drama with her so I'm sure the best thing will be to give it all a go. Her sensory issues are definitely getting worse at the moment, and she's suffering a lot with general overwhelm at all demand so I can only hope that meds help.

Do others find that t general feeling of overwhelm is less when on meds?

Yes - in a good way.

DD is a LOT more rational and less drama queen on the meds.

Before she started them she was also in the middle of an exceptional toxic friendship situation that I had been worried about for a couple of years. Within days of starting the meds, it was as if the scales fell from her eyes and she suddenly realised how unhealthy and unbalanced things were rather than just being reactive to everything.

That "friend" is now out of her life and she seems to be finding it much easier to form new friendships and everything less intense. Some of this may be age, but I think the meds definitely help (also probably make her easier to be around for the friends too!)

Thanks all - and has anyone found that overwhelm reduces at all? DD often gets stressed when we ask her to move to the next task or move a bit faster and ends up hiding/curling up because she feels overwhelmed.

And does anyone have any experience of Concerta XL - any tips that made it easier? I'm nervous to start because of rebound and sleep issues reported earlier on the threads but would appreciate any insights!

@addwardrobe I would say yes the feeling of overwhelm has reduced as ds is calmer overall. He’s better able to take things and pace himself. I really hope this is the same for you.

I should say we didn’t really see this effect on the lower doses but the difference on the highest dose (Medikinet 30 mg) has been remarkable.

Oh and on side effects @addwardrobe don’t forget that 50% of all dc have zero side effects according to the meds book. We have had no sleep problems at all and rebound issues can often be resolved with a very small top up. Fingers crossed for you!

Concerta at 36mg did nothing for us - even though Medikanet at a lower dose did. All very odd!

there is a shortage of Medikanet in our area so we have been given Equasm as an alternative…anyone else struggling to get Medikanet? After trying other drugs, Medikanet is the only one that works for us….so am a bit worried.

Does anyone have a link for the straw that helps you take tablets? Spoke to DS' dr and to try other brands he needs to swallow the pills.

It's the psycological barrier, hes only 6 and CAN swallow but he gets worried when he sees the pill.

Thanks!

@Mrburnshound we have been practicing with tic tacs and a normal straw. No luck with DS yet but DD5 who did not manage to swallow a tic tac when drinking straight from a glass can do it with a straw. I think with DS it is probably a sensory/anxiety issue (he also has Autism). I have ordered a medi + straw - it has not arrived yet and I am not overly optimistic but will update you when it does. I was all looking a special bottle tops and cups but they're all from the US and the cost/delivery charges were too much

Thanks @MissHavershamReturns - it's a bit nerve wracking! Thinking of starting on Monday but not sure whether to clear the diary for half term in case it's a total disaster or just make some plans for playdates and trips and hope that DD doesn't feel awful!

@addwardrobe maybe be ready to be agile if certain days are tricky. Both mine struggled the first few days. If you look back at thread one I posted a day by day account iirc. Obviously it’s only one person’s experience and some dc just take to meds like ducks to water!