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Starting ADHD medication and staying on it. Ongoing support thread for newbies and experts including Medikinet, Equasym, Concerta, Strattera and others

23 replies

MissHavershamReturns · Yesterday 07:44

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. Link here: https://uk.jkp.com/products/the-parents-guide-to-adhd-medicines

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/

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’. Link here: https://www.waterstones.com/book/day-by-day/joanna-griffin/9781911383536

There have at times been some temporary shortages of ADHD medications and if that ever happens again, a good way to try to find medication locally is the Boots pharmacy stock checker: https://www.boots.com/online/psc/?srsltid=AfmBOoppsRIo5bvorLTCII5ca_6qZvIAbFYvGGCipXV_0RI3US1MNDON . There is a useful guide to different Methylphenidate products here if switching Methylphenidate medications is ever suggested in this situation: https://www.choiceandmedication.org/psychiatryuk/generate/handyfactsheetmethylphenidateswitchinguk.pdf

This is thread 4 and thread 3 can be found here: https://www.mumsnet.com/talk/special_needs/5057892-starting-adhd-medication-and-staying-on-it-ongoing-support-thread-for-newbies-and-experts-including-medikinet-equasym-concerta-strattera-and-others?page=40&reply=152553122

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.

Welcome back to everyone who has been on the threads before and please do join us any time if you are considering, starting or on ADHD medication for your child and you will find a very warm welcome here!

Managing low weight and weight loss - Tees Esk and Wear Valley NHS Foundation Trust

Managing low weight and weight loss in children and young people with attention deficit hyperactivity disorder (ADHD)

https://www.tewv.nhs.uk/about-your-care/conditions/adhd/weight-loss/

OP posts:
MissHavershamReturns · Yesterday 07:50

@Sunshineclouds11 i just wanted to let you know i have started a new thread. As @AnEnigmaAndHope has wisely said, it is so so normal to worry when considering these medications. It is a big decision and as you will be able to see from thread 1 of these long running threads I was very worried when I started my own ds on this medication. You might find the medication book in the op helpful because it is a really reassuring and easy read. Lots of evidence and really made me feel better about my decision. Please do keep posting about your journey and keep us updated on how things go if you would find it helpful.

OP posts:
MissHavershamReturns · Yesterday 07:59

@LoveMyADHD
@chillberry
@kavvYourselfAMerryLittleXmas
@CompluterSaysNo
@Theonlyoneiknow
@HauntedPencil
@carriebradshawwithlessshoes
@Mrburnshound
@HorseAreBetterThanHumans
@Theonlyoneiknow
@Marigoldsbloom
@Jedstre
@spring124

Just tagging you all as you posted over the last few pages of the old thread, so that you know where to find this one! Apologies for not having managed to post the link to this one before the last thread locked for further posting!

OP posts:
MissHavershamReturns · Yesterday 09:24

I had a brainwave and asked MNHQ to edit my last post on the old thread to add the link to this one and they were great and did that, so all sorted now!

OP posts:
chillberry · Yesterday 11:15

Thanks for the new thread @MissHavershamReturns .

Still trying (gently) to convince DS (13, auHDHD w PDA) to give atomoxetine anoher go. He tried it a week ago and got very tired, a little headachy and didn't eat much on the first day, so has refused to try it again. Also said he didn't want to feel that rubbish over half-term, which seems fair enough.

Thank you @AnEnigmaAndHope for replying on the old thread about giving it at bedtime instead of the morning. We'll see if this is something DS is willing to try.

Very happy for any other suggestions or messages of hope about side effects wearing off after a little while.

Sunshineclouds11 · Yesterday 12:29

@MissHavershamReturns@AnEnigmaAndHope
Thank you both.
tomorrow is the day, I know it can take awhile to get the right dosage and even medication type but feeling hopefully.
my DS is only 7 but has been great so far in the lead up bless him, I hope it can help his little mind and be happier.

LoveMyAdhd · Yesterday 17:54

@MissHavershamReturns thank you for amazing new thread !

hope you’re doing amazing !

MissHavershamReturns · Yesterday 18:05

Thanks so much @LoveMyAdhd I am actually! I hope you are too?

Quite an emotional feeling to be on thread 4 of these and the little boy who was in real crisis when we started medication (and these threads!) over 4 years ago is now a strapping teen who has significant ups and major downs like most SEND kids I know, but is managing in ms, is going to start the GCSE curriculum soon and has a good friend.

I am soldiering on through good times and the inevitable bad moments too and have made peace in many ways with a very different parenting journey than I expected as a new normal. I don’t know if that resonates with anyone else!

We on these threads and our kids are all in a range of different places on our journeys through all this, but it has made a massive difference to me over the last four years to have the support of fellow SEND mums, both here on MN and in RL, so Flowers to us all!

OP posts:
MissHavershamReturns · Yesterday 18:07

chillberry · Yesterday 11:15

Thanks for the new thread @MissHavershamReturns .

Still trying (gently) to convince DS (13, auHDHD w PDA) to give atomoxetine anoher go. He tried it a week ago and got very tired, a little headachy and didn't eat much on the first day, so has refused to try it again. Also said he didn't want to feel that rubbish over half-term, which seems fair enough.

Thank you @AnEnigmaAndHope for replying on the old thread about giving it at bedtime instead of the morning. We'll see if this is something DS is willing to try.

Very happy for any other suggestions or messages of hope about side effects wearing off after a little while.

@chillberry i know it is a very different drug but side effects definitely were around for a few weeks for us on medikinet and then wore off. I hope this happens for you too!

I know how much stamina it takes to go through this as a dm so I am sending you much solidarity and hope for ds (mine is also AuDHD as you probably know) to be able to feel comfortable to go again and that this time will be easier.

OP posts:
MissHavershamReturns · Yesterday 18:10

Sunshineclouds11 · Yesterday 12:29

@MissHavershamReturns@AnEnigmaAndHope
Thank you both.
tomorrow is the day, I know it can take awhile to get the right dosage and even medication type but feeling hopefully.
my DS is only 7 but has been great so far in the lead up bless him, I hope it can help his little mind and be happier.

Hi @Sunshineclouds11 do feel free to let us know how it goes tomorrow if you would like to. Good luck for starting the medication then. Our experience was that it really did help our ds feel better and I hope that will be the same for you too.

Someone wise on here said not to stress too much about every small side effect in the first day or so as this can just be about the medication settling down for them and so might not be permanent and that was definitely true for us. I worried a lot about eg headaches but they went away after a short while.

OP posts:
Sunshineclouds11 · Yesterday 18:52

@MissHavershamReturnsI will deffo update tomorrow.
yes I’ve had a lot of people talk about loss of appetite and headaches.
he doesn’t cope the best with headaches so hoping if he gets them they pass after a couple of days.
Calpol is ready.

LoveMyADHD · Yesterday 19:44

Sunshineclouds11 · Yesterday 18:52

@MissHavershamReturnsI will deffo update tomorrow.
yes I’ve had a lot of people talk about loss of appetite and headaches.
he doesn’t cope the best with headaches so hoping if he gets them they pass after a couple of days.
Calpol is ready.

I think it’s worth practicing caution on what’s been given within 2 hours especially (might contain hidden ingredients that bind to meds and remove from body such as citric acid)

good luck x

LoveMyADHD · Yesterday 19:48

MissHavershamReturns · Yesterday 18:05

Thanks so much @LoveMyAdhd I am actually! I hope you are too?

Quite an emotional feeling to be on thread 4 of these and the little boy who was in real crisis when we started medication (and these threads!) over 4 years ago is now a strapping teen who has significant ups and major downs like most SEND kids I know, but is managing in ms, is going to start the GCSE curriculum soon and has a good friend.

I am soldiering on through good times and the inevitable bad moments too and have made peace in many ways with a very different parenting journey than I expected as a new normal. I don’t know if that resonates with anyone else!

We on these threads and our kids are all in a range of different places on our journeys through all this, but it has made a massive difference to me over the last four years to have the support of fellow SEND mums, both here on MN and in RL, so Flowers to us all!

Edited

True.. end of year exams here and I had to medicate during half term (I only do during school time) as no work would be done

i know things are supposed to be better, and they are, but certain things like specific work focus etc are such a trigger !

however yes you’re super right , I’m extremely grateful for all the support here .. I do wonder how long we ll be doing this for xxx

Sunshineclouds11 · Yesterday 21:20

LoveMyADHD · Yesterday 19:44

I think it’s worth practicing caution on what’s been given within 2 hours especially (might contain hidden ingredients that bind to meds and remove from body such as citric acid)

good luck x

Sorry do you mean like what he eats for breakfast before tablet?
sorry totally new to this and haven’t heard this

Iheartwhitetshirts · Yesterday 21:54

Hi all new to this thread. My 6 year old son was diagnosed with adhd last month. It’s also been suggested we should have him assessed for autism. His main issues are emotional regulation where he becomes violent and aggressive very easily, impulse controL and focus and attention.

we started Medikenet 10mg last Saturday and although during the day I have noticed he’s been calmer, mornings are still a battle and evenings are tough still too. He also isn’t sleeping (I’m trying to get him to
sleeo now!) until 9.30/10pm when he’s usually asleep for 8.30 so I’m not getting any kind of evening which I really need. Feels like things have got worse for us at home as we see none of the benefits and don’t even have that post-bedtime respite. Can anyone advise? Should we persevere as it’s only day six? I’m really on my knees as I had so much hope for the official diagnosis and medication

LoveMyADHD · Yesterday 22:22

Sunshineclouds11 · Yesterday 21:20

Sorry do you mean like what he eats for breakfast before tablet?
sorry totally new to this and haven’t heard this

Sorry lovely my bad

my comment was about calpol (it was all sorts of E numbers that might impact absorption of adhd meds )

good luck xx

MissHavershamReturns · Yesterday 22:23

@Sunshineclouds11 the only food we were advised by our consultant we should avoid iirc. was grapefruit. We eat a normal diet for ds otherwise and just try to aim for a more protein rich breakfast than we did before meds as that seems to help.

OP posts:
MissHavershamReturns · Yesterday 22:25

@Iheartwhitetshirts it’s good to hear he’s a bit calmer at times and the sleep can settle so I would keep with it for a little while. We had the sleep issues in the first week too but they were much better by the three week mark iirc.

What we found was that once the medication was at the right level and he was less told off at school and less stressed that benefit did carry over to home because he was less overwhelmed by the time he got home, so things did improve for us too, but I completely hear you that sometimes it seems like the benefit is just for school!

OP posts:
MissHavershamReturns · Yesterday 22:27

LoveMyADHD · Yesterday 19:48

True.. end of year exams here and I had to medicate during half term (I only do during school time) as no work would be done

i know things are supposed to be better, and they are, but certain things like specific work focus etc are such a trigger !

however yes you’re super right , I’m extremely grateful for all the support here .. I do wonder how long we ll be doing this for xxx

It’s strange isn’t it! Because at the moment I can’t imagine mine coping without ADHD meds but adult services seem to be another whole fight locally so I have a horrible feeling we would end up going private again to maintain access. Another few years before that though thank goodness!

OP posts:
Iheartwhitetshirts · Yesterday 22:33

MissHavershamReturns · Yesterday 22:25

@Iheartwhitetshirts it’s good to hear he’s a bit calmer at times and the sleep can settle so I would keep with it for a little while. We had the sleep issues in the first week too but they were much better by the three week mark iirc.

What we found was that once the medication was at the right level and he was less told off at school and less stressed that benefit did carry over to home because he was less overwhelmed by the time he got home, so things did improve for us too, but I completely hear you that sometimes it seems like the benefit is just for school!

Thank you! I really hope so. He’s a sweetheart but very difficult to manage and I’m a bit burnt out with it all at the minute alongside other life stresses.

Sunshineclouds11 · Today 07:40

@LoveMyADHDAh ok got you. Thank you

Sunshineclouds11 · Today 15:54

Ok so first day on meds, Medikinet XL 10mg

how does this sound;
Tiredness - went for a lie down for 20 mins (never does)
Ate lunch but not snacking (he normally snacks a lot through the day)
Abit quiet
Not played on Roblox but watching YouTube
Abit snappy

MissHavershamReturns · Today 17:03

@Sunshineclouds11 Sounds like a relatively good first day and I hope you felt at least a little relieved by it?

Mine was also reactive and tired and less appetite iirc. The reactive and tired then calmed down after the meds were settled. Worth keeping an eye of time of day of any snappiness if that goes on beyond week 1 or is extreme.

Did you think there were any signs of increased impulse control or concentration? They can be subtle in the starting dose.

OP posts:
Sunshineclouds11 · Today 17:16

@MissHavershamReturnsI am pleased with how it’s gone, was expecting worse though if I’m honest.

Good idea for keeping track on time of day for snappiness.

So regarding impulse control, he’s been good at it today, but nothing has really ticked him off, the real test for that will be at school next week.
hard to say regarding concentration tbh.

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