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

[MissHavershamReturns]

Another thread to keep the support and encouragement going as we keep each other company along the journey, starting with considering trying medication for your dc and the earliest days of trying medication. Lots of help here also with potential medication switching and the path of moving up dosages until the right stopping place is found (titration).

There is an amazing pool of parent knowledge on here of 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. I will answer any questions I can from my family’s ultimately positive experience with the medication, through a range of ups and downs. Should say upfront though that I have no expertise and am not an hcp, just a mum.

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.

This is thread 2 and 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 it’s a good place to read back to see a range of ways that meds journeys can unfold.

Looking forward to thread 2!

Thank you so much WesternEasterner. My husband was a bit unsure, but DS has actually requested that we give him the 5mg top up at lunchtime.

So just had feedback from DS's autism assessment. He didn't meet the diagnostic criteria for it but he does have some traits that are often associated with it. I'm quite pleased as it's what I suspected. He has significant sensory difficulties and some social and emotional difficulties but because all of these have been much improved since he started on his medication they think some of it is down to a delay. The pyschologist/psychiatrist said that they felt his ADHD was so impairing that his brain hasn't had the capacity to learn social nuances and subtleties or learn how to initiate play. She thinks to some extent, now he has the medication he has space to learn them.

The door is very much left open for reassessment in a few years if the gap widens but she doesn't think it will - and I agree.

So helpful to finally feel we are getting the full picture for our beautiful boy 😍

@WesternEasterner glad that the outcome was what you had suspected, your DS sounds a bit like mine in that there are a couple of ASD traits but not enough for dx.

Now he's on the meds there seems to be more from him in the way of self-awareness. I think also his ADHD was impairing his social abilities, I would observe his peers trying to talk to him but he would just be looking off in the opposite direction, or he would get up and wander away from them. It's no wonder the party invites dried up after a couple of years in primary school 😞

This sounds just what they said about my DS! That his social skills issue was more impaired by the ADHD rather than autism. I love the positivity in your last sentence.

I've just asked permission for DS not to attend the school assembly on Fridays and could I do home learning with him instead. He finds the entire assembly a struggle and school will endlessly negative complain to me about it on pick up. Might as well just ask to withdraw him and bring him in at 10am. Then everyone is happy... potentiallyz

@AndrewGarfieldsLaptop we did this last year, I picked him up once a week when the rest of the class had PE. PE was a huge trigger for him so we agreed he could miss one session of it a week. He was thrilled! At home we worked on plugging the gaps he had - we worked on social skills, articulating his thoughts, handwriting and spelling. We did specific things that the educational pyschologist has suggested but I knew school didn't have time to do with him.

I worked him hard for two solid hours!!! It was really good for him though. He got nothing but stress from the PE lesson as it was games based and team sports are a huge no no for him. Sensory overload and children running at him to try and get the ball when he knows he's crap at it. We insisted he do the other session though as that wasn't team based and was working on key skills like balance and coordination.

Hello, just wanted to update you all, I've not completely disappeared but it's a long one I'm afraid.
DS was getting on fine with the Medikinet - thank you all so much for the tip about having capsules that can be opened rather than tablets - so very helpful :)
Anyway, yes so concentration at school much better, lots of good reports from teaching staff, all good.
Titrated up to 25, everything seemed fine like it was finally 'working' - and then he's had a mental health crisis and is due to be admitted to the children's psychiatric unit in a couple of days.
So we're all in a bit of a mess here, but I just wanted to say thank you for all the help I've received here, and I'll be back - but it's just a bit too much to be thinking about updating MN at the moment.

I'd like to make it clear though that the meds haven't caused the crisis - it's more that he now has thinking space and can't distract himself from his feelings as easily. Double edged sword and all that but ultimately better out than in as Shrek would say, and at least he can now talk about what is in his head.

@WesternEasterner - that's interesting about the ADHD affecting social skills development. Definitely something to think about.

Gosh @ColonelSpondleClagnut that's an awful lot for you all to deal with. Sending you lots of strength and love. Come back when you are ready, we're all here ♥️

@ColonelSpondleClagnut I am so very sorry to hear about ds’s struggles and I hope you are ok and able to access support for yourself in RL.

@ColonelSpondleClagnut so sorry to hear this. I work with children in health and I can imagine what you're going through and I am sending you so much love right now.

I do believe in what @WesternEasterner has said about the social skill development. Ita the thing that worries me the most with my 6 yo. He's so busy going at 100mph that he misses social cues and behaviour and its only now emerging. I am a little disappointed in Medikinet at 10mg its still only taking the edge off him but not seen big changes which I know means we still have a eay to go but worried because of his age our prescriber is hesitant to go up much more. Its interesting about the 5mg top up during the day so have discussed this with them.
My DS hates going to assembly and tbh so did I as a child so I'll be having a little chat with school about him missing it.
Thank you again all of your for your advice and support. This thread is a LIFE saver!

Just a heads up that I've been unable to get Equasym ANYWHERE for this month and it's needing to be adjusted to Medikinet XL. I hope they are one and the same and no issues caused (if they can even get that fingers crossed)

Feel the next few months could be a real pain.

I'm so sorry to hear you are having a hard time and really hope your DS gets the help he needs xx

@HauntedPencil really sorry to hear about your struggles with Equasym. It’s hard enough having to navigate the world to help a young one with ADHD without adding medication shortages in. Medikinet XL has been good for us and I hope it’s the same with you.

Thank you! I know it's a real pain, I managed to get it from Tesco last month. I hope it ends soon and everyone isn't finding it hard too.

Thanks! And sorry for silence. It’s a mixed bag here. It is Medikinet XL. She says her concentration is better and impulsively is more under control. We haven’t had a self harm incident in months. However, they make her feel so nauseous she’s missing doses and even considering giving up. We had parent teacher evening tonight and it was glowing. Considering this time last year they were talking about expelling her and now she’s a prefect and model student. I’m in a bit of shock.

@ColonelSpondleClagnut I’m so sorry to hear this. I don’t know how old your DS is, my DD is 17 and has had severe mental health issues in the past so I know where you are coming from. I hope he (and you)is getting the care he needs ❤️

So sorry my dear …

its hard, you’re in my thoughts and prayers xxx

Hi there - I was on the first board but haven't posted for a while. DS is now 8 and has been on Medikanet for 2.5 years - currently taking 15 mg in morning and 10 mg at lunchtime. Over the last 6 months, his behaviour has really deteriorated - once the drugs
have worn off he is so defiant and is impossible to reason with. It is my birthday tomorrow and we had gone out for a quiet meal at our local Italian which we have gone to for years, and he just was so awful that we had to all come home. We used to be able to take him out with no issues.

anyway - his doctor has now prescribed him Intunitiv. Side effects seem awful but doctor is recommending taking it alongside Medikanet. Has anyone else tried this drug? Does anyone take Medikanet plus something else? I feel so desperate as well as desperately sad. I am not sure we will ever be able to sit as a family and eat a meal together. (Eldest son is probably on ASD spectrum…)

@Hels20 I’m so sorry to hear about your difficult meal. I believe it is the drug Guanfacine which you’ve had proposed for ds? I think Intunitiv is one of the brands if I have that right. There is quite a bit about that drug in the medication book in my op, if you have that, so it seems to be a known option.

Was the consultant thinking about increasing the dose of the drugs he’s already on? Could those be wearing off or less effective as he’s grown? We are definitely seeing my ds be more be ott with more adhd behaviours in the evenings now. I think he’s probably under medicated now but given his struggles with weight I doubt they will increase it.

@Hapagirl48 I’m so glad that the medikinet is working and wow to the amazing parents evening. What a huge difference!! That’s amazing and you must be incredibly proud.

I’m sorry it makes her feel ill though. Is there anything that could be done to help? Does the dr have any ideas? I’m sure you’ve tried the basic precautions long ago. I think I remember taking the medication only after a large meal and adding a glass of milk immediately before taking being mentioned, but I assume those are not effective for her. It might be worth chatting to Pharmacist as they also often have ideas on managing side effects.

That’s rubbish isn’t it?
Does he have breaks from Medikinet at all?

does he take the usual summer holiday, weekends , Easter etc?

I wonder if he’s either created tolerance or some of his own nutrients (magnesium or zinc) have been decreased which happens in adhd drugs

is he taking any multivitamins at all?

Yes - he is on a mineral supplement and a vitamin supplement. It’s possibly because he is older and dose hasn’t changed for at least a year….just not sure how much of a shortage there is of Intunitiv…so we have 26 days of tablets but all chemists have said they are out of stock and not expecting delivery until December - or possibly Jan. so not sure if good to start…

Hi sorry to read this, we are in the same boat here sounds like we are experiencing very similar things. My DS symptoms really stepped up and we've had some awful days, we've just gone up from 30 to 40 mG of equasym. His consultant felt as it was going so well before a tweak might be wants needs to get him back on track.

We aren't advised to take breaks by our consultant unlike some other posters, which is interesting but I keep meaning to ask her.

Hi, I hope we are all okay! Just bombing in with a quick question. When did you all increase on the medikinet?

I've posted on here a few times before that everytime we increase, we have a huge side effect of aggression. It's caused us to be suspended from school for 2 days already. DS has been on 10mg medikinet since the summer and over the past few weeks I've noticed that I feel like it's not having much effect anymore. We are more scattered and struggling to reason with. Any advice welcome.

@AndrewGarfieldsLaptop We went up across 6 months as ds was in a vulnerable state and is dual diagnosed with ASD.