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!

There are quite a few out there, but most are like horse tablets. These are the most acceptable for DD:

https://igennus.com/collections/magnesium/products/triple-magnesium-complex-fully-reacted-chelated-magnesium-citrate-bisglycinate-taurate

Sorry, didn't see this. It really depends what works - DD found rest breaks too much of an interruption so had:

• extra time
• used a laptop
• quiet room
• ability to take top up medication if required.

Hope that's useful.

Hi-I just found this thread and could do with some support. We are new to adhd and medication and just starting the journey with DS 17. Diagnosed inattentive 4 months ago and struggling with last year of A-Levels. Has become anxious in a new school setting so it’s sometimes difficult to tell whether anxiety or adhd is at play. He has started medikinet, 5mg for 4 weeks over summer, 10mg when back at 6th form and has just gone up to 20mg. He is feeling anxious but this has coincided with the demands of the term notching up (UCAS, coursework, looming exams) and social pressure of not finding his tribe yet and feeling a bit lonely at 6th form. He does report better focus although sometimes says he “feels weird”. He has slipped a day or so of medication and doesn’t report feeling less anxious on those days.

We will keep going as it has been a long journey to get here and really want to support him through this last year of alevels that seem so crucial to the future. I wonder what the journey for other people has been like and if anyone has advice, words of encouragement or experience that might help keep me feeling positive!

Hi @spring124 welcome to the thread. I’m glad to hear you’ve managed to get the diagnosis and access medication.

It’s really hard to disentangle different clauses isn’t it, because ADHD often comes with anxiety, for us the medication decreased anxiety but for a small number of people I believe it can increase anxiety, though I’m not an hcp. New school can definitely cause anxiety too for lots of our ND dc.

My dc is also on Medikinet and for us we only saw a dramatic improvement after a few months in the final dose (for us this is 30 mg but should say my dc is 14). I don’t know if it helps, but my dc is in a much much better place as a result of medication and much steadier now. Keep posting if you would like to as there are lots of people with experience and I think a few people have older ones.

That’s really helpful, thank you so much. He’s staying on 20mg for another month before trialling 30mg. One challenge is getting him to eat in the morning, I think the jitteriness might be related to not eating enough and crashing before dinner.

Can anyone with older children comment on managing socialising/drinking alongside medication? Do people just make sure they don’t take the medication at the weekend if they are drinking? Or do they not drink at all?

@spring124 hopefully you will see quite an improvement at 30. It could well be the lack of calorie intake because when we adopted a very new approach to food with our ds after starting meds that really helped. We started making a very protein rich big breakfast (eggs, yoghurt, bacon etc) and had to get him up a bit earlier to eat it. We also added a late night meal at about 8pm when the meds effects on appetite had reduced.

I don’t have any alcohol knowledge I’m afraid, but the meds book I linked to in the op I believe covers that and is a really good read generally as well.

That’s really helpful thank you, am reading back through previous threads and have ordered the book, that’s sounds like a must read. Getting up earlier for breakfast sounds a challenge for us but a good idea so I’m going to see what we can do. A month more of 20mg then it sounds like we try 30 and see what happens. I have probably been over observant and vigilant and it sounds like I need to try and see what’s happening over a number of days rather than asking multiple times a day if he can tell the difference.

DS is 13. We started titration around this time last year but he then hit burnout and wasn't able to attend school, so we put it on hold after a few months as we weren't seeing much positive impact and we wanted to give him time to recover from burnout.

During titration we tried methylphenidate and DS lost weight and appetite but didn't show much improvement with focus. We then tried guanfacine for a couple of months. His appetite was better on that but again, we didn't think we saw much difference with concentration. (Once he was off it, we thought there probably had been some improvement but not loads). He was increasingly resistant to taking the meds (he finally explained that he found the pills bitter) and as he wasn't going to school, we agreed to pause titration until he was settled in his new school (a ND therapeutic independent SS).

We're now due to see CAMHS next week. Two psychiatrists (private and CAMHS) have suggested that we might see better results with atomoxetine due to co-morbid autism. However, DS sounds very reluctant to go back on meds. We think it could help him at school, but also don't want to force him if he's adamant. Any suggestions?

Just haD DS parents evening and he's quite impulsive (in a "wandering off" way) and unfocused so going to have a catchup with his dr. He's on 2 x 5mg dexamphetamine, he's also just started a new school for y3 so dont know if he needs a higher dose or a different drug.

We tried methelphenidate and it didn't agree with him 😢

Apparently he gets really distracted by copying out thr text from his now and next board vs doing his work....

Dosage does seem a bit low (assuming it’s equivalent to 10mg Elvanse)
hopefully the doctor will up it - perhaps you can ask him to try Elvanse as well, or even Atomoxetine (we are on both )

do you give enough protein in the morning ?

Hi all. Just wanted to say thank you so much for this thread, it’s so useful! Just hoping for some advice. My son has just turned 6, he’s been on meds for almost a year. We’ve mostly stuck with Medikinet 5mg IR twice a day. We’ve also tried 10mg XR and 20mg XR, as well as Equasym. Generally we are happy with the current meds. They calm his hyperactivity and impulsivity, and no side effects. Sleep is good, no rebound etc. The problem remains his focus - he’s still so distracted and unfocused and not really making much progress in school. However, ASD is also in the mix, which complicates things further! Just wondering if anyone has been in a similar situation and has any advice? Thank you!

@needaname19 my 7yo is in the same boat - no answer yet!

@lovemyadhd thanks, I give him an egg and porridge and PB where possible. He cant have dairy which is a pain but I try and prioritise protein as you previously suggested to me.

My Dr is a bit against non stimulants only and he rejected my ideal of non stimulant vs stimulant (maybe because DS wont let me take his blood pressure as Dr Feels the side affect could be too much?)

I think it's equivalent to 10mg lisdex but more of a short acting as DS didnt get on well with long acting mrthelphenidate.

Maybe I will push for the non stimulant, ive suggested a few times and he has pushed back quite firmly

Personally I’d ask to increase dose first , honestly you’re in super low dose. Lowest I’ve seen on that age is 30mg Lisdex so 15 dex , much more than yours

with this type, if you give too lose of a dose , it doesn’t quite hit the spot and it gets them super agitated and hyper!

if this doesn’t work really try get your doctor to try Atomoxetine , much less side effects than stimulants , great for calmness not the best for focus I must admit …that’s why we combine meds

have to say though because Atomoxetine works much different , I had to spend so much time researching absorbtion speed etc and I ended up changing the types of proteins I give. Vegan ones don’t bring the best results, it’s the whey isolates that do plus egg white powder. Could you try to give the latter in his porridge perhaps (I get it from Amazon )

basically eggs and turkey is what creates the best amino acids and hence dopamine etc

x

Ah sorry I think I have confused you, he's on 2 x 5mg dex and sometimes an additional dex 5mg to carry him through the evening,

Ah that's si interesting re the food. So egg white powder is better than a fresh egg in porridge? We can definitely have more turkey and i can mix in whey powder.

I might ask about elevenses too, I think because the long acting meph made DS so spaced out vs thr short acting meph, thr Dr is thinking IR Is best for him, but obvs meph is different to amphetamines

Thank you for all your help :)

Does anyone have any thoughts on medikinet extended release and low mood? DS 17 has increased to 20mg and has decided to stop taking it because it was making him feel down. The focus was better but not keen at the expense of feeling low. We have another appt next week, has anyone else experienced this and what have your tried instead? Thanks

@spring124 I’m so sorry to hear this. IRC we experienced low mood for a few weeks with medikinet but then that settled and things improved. Did he try it for a few weeks? There are so many options that can be tried including the non stimulants and hopefully one will work much better for him.

@Mrburnshound I hope the doctor has good advice. My dc is eating so much egg that it’s unbelievable but it did seem to help. We had to abandon whey powders though as they were wreaking digestive havoc! We do hot chocolate with full fat milk now instead.

@needaname19 it sounds as though you are doing all the right things here and my ds also still struggles with concentration despite being medicated. Some random thoughts, including have you tried increasing exercise? There is some research that says this really helps. Lots of our kids of course run around so much they get loads of this anyway but exercising before morning lessons eg we used to park up a bit away from school and walk can really help. Is your son getting movement breaks at school? Just as another idea but I’m sure you’ve already tried this. Have you also had an ed psych assessment to see if there’s anything else in the mix which might need specific educational strategies like dyslexia, processing difficulties etc?

@chillberry I’m so sorry to hear that your ds had a period of time out of school and how impressive that you’ve managed to get him back into school and to such a specialist placement. As you know my ds is a similar age now and very much exercising his autonomy lately. It is hard with AuDHD teens to get them to do something if they are very unsure. Is going private an option at all? If so pm me as I know a private practitioner who is very good at getting through to hard to reach teens. Would he be prepared to try something in a capsule with no aftertaste? If you could get him to agree that then maybe the practitioner could build that into the considerations on what to prescribe?

Hi. My son (8) has just started on an 8 hour slow release capsule medikinet. However, it seems to be wearing off after about 5 hours when all his typical adhd symptom return? Is this usual?

We are on Medikanet XL - and have been for 4 years. It does wear off for us after about 4 hours so we have to give a top up at lunchtime which I think is quite usual…

got you, but yes still super low.. Medikinet and Elvanse are sooo different so tricky to say whether slow release Lisdex won’t be good for him

egg white powder or the real thing is the same thing (former is probably more concentrated ), I think I mentioned it as it’s better than vegan or other proteins

good luck xx

@CastleSky like @Hels20 we have this and also give a lunchtime top up

@LoveMyADHD thanks!

@castlesky my son's meds only last the minimum expectation, he generally has a very high metabolism (as do i) so I think this can affect things

I've found this thread tremendously helpful, thank you. Jumping on to share our experience so far with Methylphenidate (traqulyn). DD is 7 (though the size/height of a 10 year old) and started 5mg x2 per day two weeks ago. No major improvement as yet (such a low dose I guess) and luckily tolerating it well. Hoping to titrate up later this week.

She's inattentive type (plus ASD) and struggling so much at school with focus and regulation, I just hope it helps her.

To anyone else beginning this journey and feeling slightly terrified, you are not alone.