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!

Come for cake!

DS's meds have ranged from £120 to £33 in the past few months.

We usually pay between £40-60 a month. We get Equasym and a generic 5mg top up for that. Wonder if you could find a pharmacy elsewhere that would post to you?! I'm in the south west near Bristol.

@AndrewGarfieldsLaptop do we know each other?? Cake is literally the only reason I'd meet a stranger from the Internet! I'm surprised I wasn't kidnapped as a child!
@WesternEasterner this is a very very good idea.
I'm going to try Asda next time because I think for ease I went to the local pharmacies as I work FT and its always down to me to go on the hunt but yesterday was a tad silly.

I wanted to use little pharmacies for the same reason, but they never had it in stock!

Chocolate or Victoria sponge?

@AndrewGarfieldsLaptop a Victoria sponge every day!
@WesternEasterner erghh quick question do our children know each because now my DS has decided to wake up at 2am in the morning as if he's ready to go to school hahaha! Picked up Melatonin today! He was up for 2.5hrs and then I had to drag him out of bed!

Anyone else's kid having BIG feelings and BIG emotions this week because of change of routine with school?

I've pulled DS out and I'm homeschooling him this as he's overwhelmed. He's so overwhelmed he had an emotional meltdown at school.

I'm slightly annoyed at all this week AND NEXT they are rehearsing the nativity, something that I've requested he's not a part of. He's just been sat watching and been bored.

I'm having a cup of tea and a sob, when the fuck am I meant to wrap presents now?

@AndrewGarfieldsLaptop definitely us! Sending love because it’s been very hard so I feel your pain. Do you have getting over all the various things that are going round as part of the puzzle? My ds has been unwell off and on for weeks which is NOT helping!

Sending you unmumsnetty hugs @AndrewGarfieldsLaptop x

I'm so sorry this is so rough for you, yes always have issues this time of year but in honesty this whole term has been a bloody nightmare for us. Big hugs.

It’s crap I know.., this Xmas crap at school is making them worse

sending love, we re here to support xxx

@AndrewGarfieldsLaptop yep!! Thank god its over.
Had to tell school he would only take part in one performance where we'd be there. It was just ridiculous they performed it twice a day for 5 days!
So sending you lots of virtual hugs!

Thank you so much @HauntedPencil @nightwebs @MissHavershamReturns ♥️

Today went from bad to worse as DS got suspended for pushing a friend. Got the phone call at 2pm. Because this is his second suspension this term (first was kicking a teacher), he should be suspended for a week. Instead they have allowed a day.

I've made the decision to keep him home this week and I'll home school him. This is at the cost of my mental health as I am burned out at the moment as baby is teething and full of cold, and I am exhausted. I know it's not his medication which has caused this but rather the change in routine.

I took him out for a late night scooter walk before bed and he was a nightmare on that too, so I'm drawing a line under today with a large jäger and lemonade and a big sob 😭

Today I feel like I am failing like a mum.

TWICE A DAY FOR FIVE DAYS??? What is this??? The west end?????

@LoveMyADHD I swear they rev them up on purpose!!!

@AndrewGarfieldsLaptop you are not a terrible mum at all. The absolute opposite because you have recognised what it is your son has struggled with and you are supporting him with every ounce of your being, despite running on empty. You are wonderful but this journey is hard.

I'm a teacher and all my children this week have struggled. I had three in tears at the end of today over tiny things they would normally be able to cope with. The ND children I have are struggling more than most with the changes in routine but it's affecting all of them.

Nativities are awful for some children. All the practice, the pressure of the performances, the stopping and starting, the having to sit down doing something incredibly boring. Every year when we do ours I have children who need big accommodations to get through it - some will only join us for one small part of it and only practice that but once or twice, some go off with a TA to do jobs or other bits. This year I had colouring at the back for a few of mine who just couldn't tolerate sitting through it for hours of practice. It's a juggle but it's necessary and @YearLongChristmas I'd be expecting every good school to make accommodations for children. If yours haven't, you should ask why. Well done for being your child's supporter and advocate xx

@AndrewGarfieldsLaptop you are NOT a failure! Never ever say that. You are doing way more for your son than anyone on this planet and thank god he has you. You're allowed a big drink and a cry! But you are Superwoman!!
@WesternEasterner honestly I don't even know where to start with my DS school. It's meant to be inclusive. But I'm constantly having to tell them what adjustments to make for DS and the other ND kids in his class let alone the school. What I will never understand is why they do assembly in the afternoon. NT or ND kids do better in the morning not afternoon. It's like they set them up to fail. 2-3pm the nativity was!! Literally the end of the day!!! The morning nativity was to other schools and nurseries in the area!!! Like why is that necessary??

Ten performances of the one nativity? Why??

I'll never forget DS's nativity. He was sat at the edge with the TA next to him but he still ended up getting up and wandering all over the stage, then started playing about with one of the props before a teacher got him and took him away. All I could see were the other kids sat there nicely while DS wasn't doing that at all. I got up and left in tears, it was awful.

By the last year of primary they trusted him enough to give him a speaking part in the leavers assembly but I don't think I'll ever forget the nativity.

@AndrewGarfieldsLaptop I hope you got some sleep. You are an amazing mum and if you ever doubt that just think about everything big and small that you do for him every day

@WesternEasterner I’m sure the children benefit so much from your kindness and insight into how tough this time of year is for our ND dc.

@nightwebs i remember so many nativities like that too. It’s awful when we are still coming to terms with the differences of our dc and then knowing other people can see them so publicly struggling.

Our experience was similar to this as well. It was the first time that I had left the house in months following the death of our baby in September, and seeing my little DS really struggling to keep it together broke my
Heart. He couldn't keep still at all and then burst into tears at the end.

I hate nativities, especially for little kids. Who is it for exactly?

Thank you for being a lovey teacher and recognising that this is a difficult time. This means the world to parents like us!!!

Thank you everyone for being lovely to me during my pity party last night. DS woke up this morning and did some school work and some art, and he said his head and heart feel so much better. My lovely parents have brought me a printed to help with homeschool this week which made me cry. I'm seriously considering deregistering him and keeping him home until I can find a better school for him.

@nightwebs you have described my child!

This thread has been enlightening! I have a 11yo DS who has just been privately diagnosed with ADHD and ASD. Only really came to light over the last year as he began to struggle at school, thought it was just how he was, but live and learn, it explains a lot! He really struggles with homework and open ended tasks - he just can't seem to get started and engage his brain, daydreams and procratinates but really wants to do well and please. He is also very bouncy particularly around his younger siblings and he is constantly bumping and sliding into things and hurting himself or others 😅🙄

He is in Y6 so starts secondary in 9 months and I'm quite worried about the academic side. The consultant didn't recommend meds initially and mentioned the shortage anyway. However, I am keen to try them sooner rather than later before he starts secondary school whilst he's in a familiar environment. Does this sound sensible?! My younger DC also has ADHD and we haven't wanted to try meds for them as we feel they are well managed but for DS it seems it's causing him more issues.

I've also read quite a bit about children getting particularly bouncy / hyper in the evenings as meds wear off - this is currently our calmest, most regulated part of the day and I don't want to spoil that if possible! The possible anger issues scare me too - he's had some real angry meltdowns in the past, they don't happen often now but he has been really aggressive and difficult on occasion! Is this considered a frequent side effect? Are there particular types of meds that might avoid this?!

@neonleopard I’m so glad you’ve found this useful. Welcome to the thread and please ask all the questions you have. We have found meds so helpful for ds and they have made the difference between him melting down all the time and being able to manage in school.

Anger can be a side effect eg according to the leaflet in our medication. I know some people on this thread have experienced this but we haven’t at this dose with a top up in place, if that helps put your mind. I’m not sure if any one med is better than another for avoiding that but definitely something to ask your consultant.

The evening can become a bit of a hyper zone, it’s true, but for us giving a lunchtime top up of just 10 mg really does smooth off that come down.

Medicating is a big decision and for us there have been lots of teething problems to work through, each of which we’ve overcome. But the positive impact for ds has really been life changing, so I feel it was the right decision for us as a family.

You might like to read the book mentioned in the op on this thread which is very accessible, evidence based and extremely reassuring.

A quick update from us as we had our ADHD review on Monday with the paediatrician in the local ADHD clinic. This was our second NHS appointment and he was kind to ds and listened to me.

I’m very happy to say that the paediatrician said ds’s weight is now no longer a clinical concern as we’ve got him up to the 17th centile. He was underweight this time last year, having suddenly lost a lot of weight between going up to 30 in the August and the December due to lack of appetite. We’ve worked really hard to boost his weight and I’m so pleased that things are back on track. It’s also a huge relief and I felt actually quite proud!

His height is also going well and he’s grown at least 7 cm in 11 months, which they said was fine. This was also a major relief, as a little bit of me is still worried about growth.

We talked to the Paed about dose as ds is back to being overly bouncy in school and school are reporting a few more issues again. I do think he needs would benefit from a slight med increase. The Paed said that he’s already on quite a high dose (considered 40 as it’s 30 plus 10 top up). He said it’s important to leave room for top ups in the GCSE years as 60 is the maximum he can prescribe. He said to stick where we are and he will increase the dose if school complain more/things reach a crisis point for ds again like it did before meds. This does make sense but I wish there was a bit more wiggle room!

He was pleased to hear about the number of med breaks we’ve had and we are embarking on another one over Xmas. No medication at all from today for a week or so!

Anyway, overall a pretty positive medication review appointment for us with the better news on weight.

How is everyone else in the run up to Christmas? Can definitely be a challenging one for our ND children and us as their families!