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!

Not much to report here . My son is doing well at school. We have 3 x 10 mg equasym as we cannotbget the 30 mg capsules .

@MMissHavershamReturns you are doing brilliantly, the transition must be hard on all of you. We are here for you.

@LoveMyADHD couldn't help but notice you said your son did the 11+ plus? Did he pass?

DS is only y4 but he says he wants to do the test. He's incredibly intelligent - Ed pysch said he was like 95th percentile or something and I'm confident he could pass the test. BUT the reality of him is so different - as I'm sure we all appreciate! His executive functioning and resilience levels are incredibly poor and he struggles with overwhelm at times. He achieves well at school but finds anything related to writing a chore still. In my heart of hearts I think he'd do better at our v v good local comp that he can walk to. But I'm open to learning more about the GS especially how it helps those ND kids.

Thank you so much for your support @Hapagirl48 @LoveMyADHD and @NurseP. I have read all your posts quite a few times and it’s really helped. I’m hearing your message loud and clear. We will get through this, it’s ok that it’s tough and not surprising in the circumstances and better times will hopefully be on the way.

Not everyone in RL gets it as you will all know and I worry about pushing people away which means when things are so tough sometimes I can’t always talk about them with friends who have NT dc. It just helps a lot to know that he and I are not alone in all this

@WesternEasterner in our local ND charity here quite a few parents have said they opted for GS for their very able but scattered ND kids and it had worked incredibly well. I think for mine (who is similar) it would entirely depend on how good the SEN support and knowledge is at the school.

Also obviously on fit, so a reasonably strict GS school with good SEN might be fine for an inattentive ADHD child who also has ASD but masks and is overall pretty compliant, but not for a child where compliance can be beyond them.

We opted for a non selective school for ds, while he aced a similar local test they do here we just didn’t think he would cope with the level of homework and strictness at a selective setting and we don’t live close enough to the GS recommended by the mums in the local charity for that to be an option.

@WesternEasterner I think the pluses of GS can be from what the local mums were saying that it’s a self selected crowd, so you don’t get the broader peer group socially/behaviourally. Overall better behaviour which can be less stressful for ND kids, less chance of being led astray of that’s a risk and also more acceptance potentially for bright kids as being bright is often better received in the peer group. Possibly more chance of finding own tribe of other quirky high achieving ND kids.

@NurseP so glad all going well on the current meds and that you were able to source a replacement med dose for the one you couldn’t get. I bet it feels a long way from the early days when you were wondering whether meds would work!!

It really has been life changing for us. I am so glad we decided to give the meds a try!

@NurseP me too - exactly the same that I’m pleased we did it and also life changing!

@LoveMyADHD just wanted to reply properly to you and thank you for the offer to pm especially. I completely agree on the homework. This week alone between Monday and the coming Friday my ds had to review 4 vocabulary modules for French, read a chapter of an English set text, he has a maths test this week, a short piece of written work to do for geography and a worksheet for history. I also feel the need for wine as I also have to stand by and actually work with him on a lot of it. I’m sure that by the end of the year I’m going to have learned a lot more than I know now about all these subjects

@AndrewGarfieldsLaptop it’s great to hear you are having no issues getting the medication. It seems to vary a lot by what supplier each pharmacy use. So I can almost always get one med (the XL) at one of three locally, but the other med (the top up immediate release) is a bit more tricky. I have been able to get it but had to ring around.

Popping in to say I had Medikinet last time in place of Equasym and DS has been much happier - expect it's a coincidence rather than the meds but I'm going to ask for them this time too as they seem easier to get hold of - does anyone have any intel on the difference is it just a brand name thing?

Hi @HauntedPencil I think the official difference is the ratio of instant release & slow release, I think Medikinet is 50:50 while Equasym is more weighted towards longer release?

Ah thank you, possible that he's just getting on a bit better on that basis then, might be superstition on my part!

@HauntedPencil IIRC in the meds book it explains that medikinet was designed for the German market where school is primarily in the morning and they finish much earlier than we do. So there is an immediate real ease element, but the slow release element then is not even across the rest of the day, but morning heavy, as@rhubarb84 says. This is why we have to top ours up!

Thanks MIss H. How do the timings work for you at secondary school? Ours ends at 2.45 so maybe that would be better next yr.

Sounds like a load of homework. My older child was exhausted in his first term, it's a bit of a jump isn't it. Bet your looking f forward to the break

Hey everyone! How are we all doing? How are we all doing?

DS didnt have a great day the other day and I was very quick to start blaming to new medication and the increase. However I sat and reflected back what happened that day; baby sister screamed all the way through tea time, DS had an iPad to distract him while eating. Husband came home and asked DS to turn off the iPad, baby sister was still screaming... and hell broke loose. He was clearly overstimulated by all the noise and the outburst was down to that, rather than the meds.

Yesterday he was home with me as he hates school pantomimes and we had a great day home learning. We went to the hairdressers and he sat still for all of it!

We have noticed with the 18mg they take a little longer to get into his system rather than the medikinet 10mg. I use to give him his meds at 8am ready for school but I've moved it to 630am instead.

Melotonin is working well too.

We might never get star of the week at school, but we might have a good week at school.

Update here - the top up seems to be working for DS, from the brief chat I've had with his teacher it sounds as though he's doing much better than at the start of term.

He's also generally seeming a lot calmer and saner coming out of school. I think before once the meds wore off there was constant drama with the other boys in the playground and classroom which meant he was really often all wound up at the end of the day.

We're still doing med breaks at the weekends and holidays which is going fine.

And today I weighed and measured him and he's grown 1cm and put on over 1kg in the last month! So relieved as the measurements had hardly changed for the last 6 months. No idea if it's down to all the cooked breakfasts, flapjacks and hot chocolate, but we'll keep on with those and see what happens (other than the rest of us getting tubby....)

@rhubarb84 so pleased to hear the top up is working so well and making such a difference to ds in class and with playground aggro etc. It’s been a life saver for us!

@rhubarb84 oh and the growing as well! Sounds really good!

@AndrewGarfieldsLaptop how amazing about sitting still and about the hair cut. It sounds as though the meds are really helping him and it must be lovely to bank those little wins. We have little space themed reward certificates we give out at home to the kids as they were recommended on an ADHD parenting course. So we would give one for the sitting still at the hairdresser if that happened in our house. Ds loved seeing them all on the notice board in his room. Might be worth a try? I will post a link to ours if I can find them.

Mine would only ever have got star of the week at school if it was to try to encourage future good behaviour. I think this happened once. In ds’s nursery they had the cloud, rainbow and thunder cloud system and they seemed to be continuously moving him onto thunder cloud. Obviously we didn’t know he had ADHD or ASD then.

I can’t find the well done certificates we have but there are loads here https://www.superstickers.com/category/superstickers-rewards-and-resources/certificates/award-certificates/general-award-certificates/

Mine say well done and I avoided any that look too school like or have a star on, to avoid confusing ds! I haven’t used for a while now he’s in secondary, but in primary he loved them.

@HauntedPencil sorry just saw I missed your question. It all seems to work ok in secondary. He gets the top up at lunchtime given by school. I do think it’s starting to wear off earlier, but not really sure he should have a higher dose given his struggles with weight!!

I complained to governors about the thundercloud system. absolutely horrific.

Thank you so much! I'm a bit naughty and we use money as rewards... god me 6yrs ago would be sick! He gets 50p in his go Henry when he does something amazing as he wants a 2 wheeled scooter. HOWEVER I will print off certificate as he LOVES praise postcards at school!!!

Omg to the thundercloud system! They used to have a similar system to that at nursery but were told to stop using it. It was happy/sad face on a board. One little lad always has a sad face and I bumped into his mum a few yrs later and he'd been diagnosed then, weirdly mine was fairly compliant at that age, only hit trouble when we got into school.

My son's school used Polaroid photos of them!