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!

Also a quick shout out for @NurseP, @klayton @Hapagirl48
@KTC40 @Munchies7

How are you all and how is the ADHD meds journey going?

I’m sure a lot of us will now have seen the current shortages of ADHD medication. When we went to get our Medikinet the pharmacist told me there are supply issues with some of the ADHD drugs which are going to impact on supply of other brands as well, as patients will be switched onto the available ones which will have knock on supply issues with their availability too.

More information for anyone who has not yet seen: https://www.sehd.scot.nhs.uk/publications/DC20230927ADHD.pdf

This has a list of current shortages and current availability: https://www.sps.nhs.uk/articles/prescribing-available-medicines-to-treat-adhd/

Hi! We are fine thanks. I think the lunch time top up could do with increasing to be honest. A bit worrying to see equasym on the short list!!

Hi. Thanks for asking @MissHavershamReturns It’s going okay. She’s starting Medikinet long release today. It’s not the magic bullet though and that makes me sad even though I am aware that I need to manage my expectations. Her come downs on immediate release seem quite hard and looking at it from the outside, I don’t know if it’s worth it. But I’m not in her mind so I need to step back and let her decide if the positives outweigh the negatives. I’ll report back! Hope everyone else is doing well.

I'll hop back on later but we have difficulty getting 5mg long release for medikinet. Had to go to boots and I've ended up paying nearly £68 for 10mg and 5mg long release... compared to £36 last month.

Has anyone found a big difference going from 20mg Equasym to 30mg?

DD seems to be the poster child for methylphenidate at the moment.
Started on 5mg Tranquilyn twice a day, then upped to 10mg twice a day and switched to 20mg XL about 4 weeks ago.

Seems to have made a huge difference in terms of concentration and focus and she's a lot more logical and rational than pre-meds. The XL has also reduced the rebound effect (starving hungry, exhausted, irritable and hyper all in one) a bit.

Seeing the consultant in 3 weeks time and I'm wanting to ask about whether we can drop some of the breaks (DD prefers taking the meds to not taking them) and whether it's worth pushing it up to 30mg to see what happens.

We were lucky and have had improvements with every dose increase, but the XL has definitely been the one with the biggest impact in terms of focus in class - great feedback from teachers in subjects she is very meh about normally, and who had no idea that she's ADHD and now on meds.

If you do go up to a higher dose and it's not great, can you go back down without finding they don't work as well?

Hi there thanks for checking! I would say it's mostly positive so far. My son's hyperactivity is massively reduced in school and he is able to now sit down and join in with the class and do most of his work. The school is pleased with him whereas before the medication they were complaining endlessly and demanding we move him to a specialist school. My concern is that the medication does tend to induce a zombie-style effect on him. He becomes incredibly quiet and does not initiate anything. He'll engage with teachers when prompted but otherwise does not start activities himself. My hope is that as he grows through the year he'll become more used to the current dosage and we'll get the benefits of the extra focus, and less hyperactivity without the dazing effect it currently has on him.

Hi, thank you for checking in...we have found the Equasym 10mg XL is wearing off fast and DD2 has been asking for a fidget toy and is chewing. It wears off at about lunch time 🙁 and her reading speed is only 49 words per minute (Y3).

I'm having another meds review in 2 weeks and I'm really hoping they increase the dose. It's been a lot to deal with DD1 who has an EHCP for ASD so sorry not checked in, not that great at the moment

@NurseP glad to hear you are doing well and sorry to have to post bad news on shortages. We asked about increasing lunch time top up and were told with methylphenidate it never goes up from 10 or at least our consultant doesn’t. Will be interesting to hear what you are told!

@Hapagirl48 good luck with starting long release. Is that Medikinet XL? Will you have a lunchtime top up of immediate to smooth off any crash from that? Or see how it goes and then ask for a top up if needed?

@AndrewGarfieldsLaptop looking forward to hearing more later and really sorry to hear you have struggled to get the 5s. These supply shortages are stressful.

@ANonnyMice what an amazing result for you and dd! Really glad it’s worked so well and that she’s had such wonderful teacher feedback. I have never used Equasym so can’t help there but on medikinet you can go back down if an increase is too much.

@klayton great to hear the medication is mostly positive for you guys up to now and you must be delighted your ds is doing more table based work and able to sit still. Have you raised the excessive quietness with the consultant at all? It might be worth doing that now? My ds was definitely a bit flat on the meds earlier this year and now he’s growing taller and heavier he’s much more lively and not so dampened down. Although whether that means he’s not getting so many of the positives I don’t know! He’s just started secondary so staff don’t know him and can’t compare now with earlier this year.

@KTC40 I hear you about things being hard and we’ve been in a similar boat recently so I’m sending you much understanding and sympathy and an un MN hug if that would help Would it be worth asking as well as the increase about a lunch top top up for the Equasym? My dd had one right from 10 mg of medikinet XL as his was wearing off at around 1.30/2pm iirc.

Thank you MissHavershamReturns...I'm not sure if the school will administer a top up after lunch (she is only 7), will just have to wait and see ☹️ sorry for your situation MN virtual hug back 💐.

DD1 had a speech & language assessment, they brought up possible dyslexia too, also waiting for an ASD assessment. We have a meeting with her neuro paediatrician consultant next month too....also the SENCo isn't responding to any of my emails...she is out of her depth and refusing to put DD1 on the waiting list for an EP assessment 🙁

Just feeling flat and wanting to give up but trying to push through. My Y5 DD needs to find a suitable secondary school for support too...it's overwhelming. I hope everyone else is coping xx

@MissHavershamReturns he only has 5 mg top up so maybe he can have 10.we will see at next review.

Hey everyone. I love this thread, reminds me and DS that we are not alone.

Where did I leave you all? DS was suspended for the week, and went back. On Monday DS's teacher stated she witnessed DS push over another child with no trigger. This teacher is obsessed that DS has no triggers. Its not true tbh, and after speaking to DS who stated that the other child pushed him first, I lost my shit at the teacher. I really told her off; she's embellished the truth to the point of no recognition on the ECHP (please see my other thread on that!) and I am sick of her saying that DS just "acts up". As soon as I challenged her, I was greywalled and told "well I am sorry that you feel that way."

Now, I want to point out that I wasn't rude and I did apologise. I stated that my frustration is being channelled in the wrong direction and its emotionally charged week for me (anniversary of DD1 death) so I am sorry if it sounds like I am being aggressive. I'm not. I'm disappointed in being told one thing, and paperwork saying another. The headteacher said to me that I was upset in which I told her that I wasn't upset... I'm disappointed in the school.

DH went the next day for pick up and the teacher stated she won't continue the conversation and shut the door in his face. DH has finally agreed to look at other schools for DS, but not until the end of Yr2.

ANYWAYS...!!! DS is now on 15mg. I wanted to share a little success. We went to the cinema this morning and usually he's fiddling with the chair, moving about, wanting to leave. He sat for the entire 90mins watching Paw Patrol. It was an absolute relief knowing that the medication is working. We are getting there.

I hope this helps some people... I managed to get the 5mg Medikinet XL from Boots. However for 30x5mg and 30x10mg it set me back £68 which is a kick in the teeth. I am hoping for no more adjustments in the next few weeks.

Im still a newbie on this thread but I wanted you to know that you're not alone. Its so overwhelming isn't it.

I'm over here still stressing about food and weight gain. DS used to be the best eater ever but now every mouthful is a battle.

In the morning he has breakfast at 6:30 and meds at 7:30. He's obviously not medicated at this point but he's not hungry either 😭.

In the evening his meds wear off by 7. We eat dinner at 6 but even at 7 he doesn't get ravenous. I don't think he ever says he's hungry anymore.

In 3 months he's put on perhaps half a kilo. This seems so little, but perhaps it's not that bad? Anyone else tracked weight gain and can give me an insight? He's just turned 9. My youngest has put on more weight than him but he's younger so probably just growing more.

Is it possible his meds dosage is just too high? He's on 20mg. Wondering if we could do a 10mg dosage at the weekend to take the edge off but also enable him to eat.

We’re at a review tomorrow for his meds. New doctor as previous one retired. One year in and he’s gone from 2 weeks starting off on 10mg Equasym to 20mg daily. Then in Spring we added in a 10mg 4pm dose of quick release as evenings were becoming increasingly difficult. His appetite has been fine for some time now, not affected at all by the meds and he’s started high school and doing well so far. But he himself thinks his current dose isn’t as affective now during the day, so I’m hoping they agree to increase it to 30mg. I’ve no idea how much taller he is or if his weight has increased much, but he does seem to have bone/joint aches a lot. He still wants to do well and be perceived as a good kid by school, so I’m glad about that. I also think that it’s a good thing for him to be going to a different high school from his siblings - there is no one to be compared against!

And I’m going to ask for his weight and height changes in the last 12 months - that would be good to know.

Our Dr has suggested us doing 10mg instead of 20 on weekends and holidays for the same reason. It doesn’t seem to make much difference though. I’m not sure what the answer. Mine is eating but clearly not enough as the weight isn’t going up.

Does anybody know how they do the weight to height ratio? Apparently for my son it shouldn’t be below 90-95 and it’s currently 95. We’ve just been handed over to the GP so his weight will only be checked every 6 months now which seems bizzare seeing as he hasn’t gained any weight in months but is getting taller and they’re concerned.
I would like to be able to check it myself.

@Freshstarts22 that's good to hear that it's been recommended by someone. We might give it a go. I'm going to go med free this weekend and see if he eats as I'm not sure it's just the meds anymore!

I have been using the WHO growth chart and tracking him along the percentiles. He was 50th up until about a year ago, now he's just under 25th. Was just over 25th when he was initially assessed.

We have dropped right down the centiles sadly. At diagnosis he was plotted as between 25th and 50th weight, but I think that was their error, as when I plot on his red book he was 25th for weight. He’s now well below the 10th.

Just checked his height. His original height was predicted to be just under 6 ft 2 based on his height when we started meds. Still on track to be fairly tall but now says just under 6 ft 1.