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!

I’m going to raise this with consultant when I see him. He is steadily putting on weight, which is amazing - 3.5 kg now since Feb, but needs to put on a fair chunk more.

I would definitely raise height with consultants if you have any concerns. DS is on 90th percentile but hasn’t grown for 18 months (he is 15) and we have just been told his growth plates are now fused. He was always on track for 6,1 but now we have been told he’s not going to grow taller than 5,9. He’s gutted. When I originally raised my concerns, they made me feel as if I was pushy mum as he was on 92nd percentile but I thought it was strange his growth had just stopped while so young and his peers were growing, and our family is tall.
I did lots of research when he started Medikinet and it suggested that if appetite was ok and med breaks were given, particularly during holidays, height would catch up, but now there is research this year saying ADHD meds can prematurely close growth plates and I think that must be what has happened.
Yes I know 5,9 is average and it could always be worse but I feel sad that this condition makes everything so much harder for my boy. It certainly builds resilience!

That’s really interesting on the growth plates - and you have made me feel so much less guilty!

DD has no endocrine IGF-1 and was teeny as a child and didn’t grow at all for several years. The consultant wasn’t at all sure what height she’d reach but genetically my family are extremely tall.

I delayed getting DD a diagnosis for the ADHD despite knowing it was almost certain since she was about 5, as I didn’t want to affect her height and weight. Endo said they were okay with it, but I didn’t want her ending up at 4ft something if she didn’t have to be.

She’s currently 5ft 7 and I hope nearly done, has been like a weed the last 18 months, but have been feeling v bad I didn’t start medicating years ago.

@Waythroughwoods I’m so sorry to hear this about your ds. When did he start the medication?

Impossible as a parent to get this right in all aspects and we can only do what we think is overall best for them.

Definitely don’t feel guilty @ANonnyMice

@MissHavershamReturns He started when he was 12. The ADHD was very evident with hindsight but we didn’t really know about it and school just kept giving detentions so we thought he was naughty rather than anything else.
I researched heavily before giving the meds but nothing came up about growth plates at the time. Even now the paediatric dr says his plates closing having nothing to do with Medikinet but it just really doesn’t chime with me.
The meds have transformed his school experience and his confidence so we have to weigh that against the hindsight wish I’d held off so he could perhaps have met his height potential. @ANonnyMice I think you should be kind to yourself. I definitely understand your decision. What choices we have to make as parents!

Indeed!

And I can second that there was nothing out there about the effect on growth plates.

The endocrinologists told me to go ahead and get the ADHD sorted (probably because she was such a nightmare at appointments) and not worry about the growth given it was a bit ? if it even had an effect.

But she was so ridiculously tiny compared with all her cousins that I felt waiting was probably better (plus Covid then meant I had no choice anyway).

FWIW, one of DD's cousins is also ADHD and started on methylphenidate at a much younger age, and is a lot shorter than I would have predicted looking at his parents. He's not hit puberty yet, so I will be interested to see where his height ends up - should be around 6ft 4 genetically, but is about 5ft 4 at 13.

Hey everyone!

When did you guys started noticing that your little ones weren't growing well? My son has been on medication for 3 months and we are still gaining weight and height. I've made switches to full fat butter and blue milk, he has a snack at bedtime, and allow him biscuits between meals. His appetite appears to crash at school; won't eat his packed lunch or fruit snacks. However his appetite comes back around 5pm so I try and carb him up!

We are now taking 15mg of medikinet at 7am, and so far... it's going ok. We are week 2.

Well, he’s had the review. Grown 3cm in a year, but lost 2kg in weight. So no upping of meds at all until he can gain some weight. He’s dropped 2 centiles over the year in his weight.
I haven’t been weighing him at all. He didn’t eat much the first 3 months, then found the sport shakes and that worked. Recently he’s been eating a lot, but he eats very healthily and doesn’t like butter or melted cheese. He also does a lot of running and sport which burns up all he eats really.
So - need to get him to gain weight!

Hey!!! Did you want some tips to sneak in extra calories? I'm a nurse and might have a few tips up my sleeve!

Thanks @AndrewGarfieldsLaptop it’s fussiness more than anything - he eats plenty, but it’s all too healthy.
Doesn’t like melted cheese
Doesn’t like the majority of yoghurts
Doesn’t like butter
Doesn’t like blue or gold top milk
Can tell if you change things
He just likes what he likes.
Average day would be 2 weetabix and milk, apple juice. Then morning snack of banana. Will have full cooked lunch at school every day and eats it with a cake on the side. Comes home, eats chopped fruit, yoghurt pouch and a couple of Oreo’s. Tends not to have a big dinner - so soup and dry toast, beans and dry toast, eggs and dry toast….you get the idea. Occasionally he’ll have a turkey salad roll and pretzels. Soup is homemade and I do put cream and butter in (but it’s a veg one and he likes that). Then he’ll have another couple of weetabix before bed. So, a reasonable amount I’d say and he just doesn’t like a lot of stuff that is calorie heavy.
He likes rice, naan bread and curry sauce - I can make that calorie heavy, but he will only have it every now and again.

@Waythroughwoods that's really interesting about growth plates. Definitely something else to bear in mind, even if it is just emerging evidence.

In other updates, had a call from school today to say teachers have noticed DS's behaviour is really deteriorating from lunch time. Mainly doing silly, irritating things, leading to other boys thumping him...

DS says he can feel the medication starting to wear off just before lunch. We have a medication review next week, so I'm wondering if I should ask about trying out Equasym since it's more heavily weighted towards slow-release? (assuming there's any available...)

We did do a medication break for about 5 days while schools were off last week, we definitely noticed DS being far more distracted and not staying still. So much random spinning!

DS has been on the meds for about 6 months now, and one nice thing we've noticed is that he's learning how to build stuff with Lego! Before the meds, he would only ever play with the men. Now he's actually building little things he's invented, and every week they're getting more and more complex. Still way behind a 'typical' 10yo I'm sure, but lovely progress. I hope the same sort of thing is happening in school, but who knows!

Yeah, what is with the spinning!!! Also I wanted to add on about the Lego; my DS who is 6 showed no interest in Lego, and now is a super fan and plays independently. It's so lovely to see.

I hope you get the medication sorted for the afternoon. I definitely can see a difference after 4pm ish in our house.

I just wanted to share with everyone that DS is now on 15mg, and sat through the entire Paw Patrol movie at the cinema with no movement, fussing or talking. Compared to last year where we would leave movies after 20mins, or he would be walking about... this is incredible. He also got home this afternoon from school and played with his marble run independently!

Has everyone seen the drug shortages?

How is the ADHD medication shortage in the UK affecting people? www.bbc.co.uk/news/newsbeat-67010493

We got an email from our clinic last night stating the issue.

@AndrewGarfieldsLaptop really awful that this is going on!

@AndrewGarfieldsLaptop this is brilliant news re the 15mg. I'm glad it's working out so far.

Last time I needed meds, two weeks ago, we went to a new pharmacy who said they couldn't get it in, which surprised me (I didn't know about the shortages at that point). But we took it to our regular large pharmacy and they had the Equasym in stock so we are good till the end of this month. We have been advised to request prescriptions a little earlier than normal - normally we have to ask 2 weeks before we run out so I'm going to get ours next week.

Luckily it's half term when we run out so that buys us a bit of time if we can't get hold of any.

We are on a meds break this weekend though. Partly to see if appetite improves, partly to save the meds for school if we do end up desperate 🫠😭 I have already had several cups of tea to prepare myself for the day. Must. Stay. Calm. It's. Not. His. Fault!

Did you survive the day!

We all have covid here. We are all stir crazy. Im a bit worried about the drug shortages; they mentioned at Boots that the prices go on supply and demand, so I'm expecting next months medication to be >£100

@Waythroughwoods I’m really so sorry this happened. It’s impossible isn’t it for any of us to know what would have happened without Medikinet or other meds. The suspicions are very hard and of course it could well have been the meds but the hard part is none of us will ever know ourselves for sure. I suspect mine will end up at least 1-2 cm shorter than he would have been without meds.

That said, one of my dc is much shorter than the other and than you would expect given dp’s height. I think if we had medicated I would definitely suspect the meds. But our shorter one has never been medicated.

@AndrewGarfieldsLaptop we had no issues with weight at all until we got to 30 mg then it struck really fast. Weight dropped off in weeks and we had to go into feeding overdrive to get it back on. What’s worked for us is a 500 cal snack just before bedtime. This also seems to be helping a bit with sleep. As if maybe his body was hungry even if his mind thought he was wasn’t. So our schedule is:

Breakfast minimum 600 cals (ideally 700)

Weekend - mid morning snack 100 cals. School find he can’t eat snack at school

Lunch he can manage about 300 cals

Weekend - mid afternoon snack 100 cals. School find he can’t eat snack at school

Dinner - minimum of 500 calories

Bedtime snack 500 cals minimum

So this is 1900 cals minimum on weekdays and 2,100 cals minimum at weekdays. He’s just turned 12 and this seems to be leading to some weight gain which is great.

@OnePlusOneEquals sone random things that have worked for us - baked beans, peanut butter, unsweetened hot chocolate, collectives unsweetened yoghurts, crisps, whole meal bagels, omlette.

And it's happened again... we have a medication increase, 2 weeks later it's an emotional meltdown. This time it was horrific and now he's refusing to leave his room.

I think we are going to just have to stick with 10mg.

@AndrewGarfieldsLaptop We found the same and I’m really sorry this is the case for you. We did find it settled after a few weeks and did most of our increases over longer holidays eg Xmas, Easter, summer as that helped.

Did you keep continuing? We have covid currently and I'm keeping him off school, so I'm considering both options.

We did just work through it. It obviously depends on the extent of it, but we found some emotional upheaval including anger did arise temporarily at increases

That was @AndrewGarfieldsLaptop