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!

And just to add, he was not quiet 🤣🤣 quite the opposite. We have had a running commentary about everything and lots and lots of questions about what's going on and when.

Hope everyone has had a good week.

We’re going to do a three day med break this half term and then a two week one for the first two weeks of the summer holiday.

Ds is very tired as he’s had a busy term including a few nights away with school in a lodge. I think starting to get nervous about the move to secondary school as well.

I weighed him yesterday and he’s put on 1.5 kg In 3 and a half months which is good. So hopefully weight gain is back on track!

@MissHavershamReturns great about the weight gain! My son's appetite seems ro have picked up over the last week so that is very reassuring and we have been totally fattening him up as much as possible!!!

@NurseP that sounds good and hopefully Half Term was a good time to get a lot of calories into him?

We’ve had a bit of a mixed week. I feel really sorry for DS starting every holiday with a med break as it really isn’t easy for him. He had a break for the first three days this time and was really emotional and tearful. That meant he didn’t even actually eat as much as I would have hoped as he was too anxious I think he’s also currently really nervous about starting secondary in September.

Our appointment with the consultant has been moved to November by the clinic so at least we now have another three months to keep get the weight on him. He’s had two big growth spurts since February as well.

How is everyone else? Would be lovely to hear any updates!

@WesternEasterner, @Plro @TheWitchingHour how are things now with your recent meds changes?

@MissHavershamReturns we are all good here, our meds definitely settled down. Still no side effects at all in terms of beaches/tummy aches/aggression. He's doing well on the 20mg and he says he likes it better than the 10mg. He's definitely quieter and more focused but DH and I feel at times he has been a bit too flat and not his sparky self. We went to the beach and he didn't enjoy it like he used to. It's really hard to explain he was just different, he spent ages looking at stones, digging on his own and coming back to us to read his book rather than running about like a puppy dog which is what he used to do. DH and I struggled to know if that's what he should be like or if it's that his meds are too high. Importantly, he was very happy, or he said he was. He didn't seem sad, just quiet and flat. But my husband is a bit like that at times and is quite a quiet and considered person, so who knows.

We have to email the consultant the end of this week. I feel like we should probably try 30mg because everything I have read says you should increase and increase until you get a dose that's clearly too high. But equally I feel that 20 is probably enough and the right dose? It's so hard to know. Would be keen to hear how other people knew they'd reached the optimum dosage?

DS is keen to try 30 - I asked him outright and I've always said this process will be lead by him as much as possible.

@MissHavershamReturns I'm sorry the weight gain is such a struggle - has he always struggled with eating or is it just since the meds? I have a background (of sorts) in nutrition so very happy to help if I can. I'm sure you've been doing absolutely everything you can though. The transition to secondary school is tough - I feel for you, we are not looking forward to it.

We have had the flooring g changed in the house over half term so yhe kids have been af nanna and grandads a lot . My son has eaten OK, a bit better than normal at lunch times which is promising. Grandad loves to gives lots of treats!! He is still very lively at times buy overall ritalin has been life changing for us so I am grateful that we were encouraged to try it . We have a review coming up this month although I need to change the appointment for work.

@MissHavershamReturns Really good here, thank you. DS seems to have settled on them and is much less anxious. He is a lot calmer on the medication and I can see a definite improvement in his social skills; he's a lot more responsive and less erratic, he doesn't bounce around and he's much less 'annoying' (which can be really off putting to other children). He's actually mentioned that he's started playing with one of the children in his class!

How are you getting on?

Hi all sorry the med break is such a pain for him Miss H, really hope he is feeling and eating a bit better now.

We are in a good phase here I'm really pleased. I think the melatonin has worked wonders for DS who usually struggles hugely at this time of year, he seems much less tired and edgy than in any other year since he started school.

Re seeming "flat" I know exactly what you mean we had this when DS moved to 30. It took a long while to settle. He's been getting on so well on the 30s generally the consultant & ds agreed to leave it there for now.

@HauntedPencil interesting you experienced that too. He's definitely been a bit better these past few days and it's still only been two weeks really ☺️ consultant says that she thinks 20mg is the right dose for us so we won't be going up again any time soon. Next review is October but we can message in between if anything changes.

Melatonin was a game changer for us too. Sleeping properly has really really helped my DS. He easily gets an extra 60/90 minutes a night now. I'm glad it's working well for you!

@Plro that's great - socially my DS is better too, definitely more responsive to others and what they are saying and feeling.

Did you end up staying on the 15mg dose?

@WesternEasterner We're sticking to the 15mg for now; we feel it makes enough difference to DS, without flattening him too much or having too much of an effect on anxiety. He's only just over 3 stone so small for an 8 year old!

Will see how he gets on, if we feel the need to increase we have the 6 week summer holidays coming up 😊

That's really good @Plro . My DS is almost 9 and he's an average size for his age. He's on 20mg now and it's taken two weeks for the 'flatness' to wear off for us. I'm pleased to say it has but the consultant said that because he got the initial flatness she doesn't think we should go up anymore. So overall we are on a very similar dose to you and sounds like we've had a similar experience/advice 👍

I’m sorry for radio silence from me. I’m feeling a bit low as ds hasn’t been great the last few days. He definitely struggles far more with returning to school after a med break half term than normally. He’s been miserable and tearful and siting with a TA out of his classroom for significant parts of this week.

Hoping things look up again soon

Really pleased to see positive updates from you @Plro and how lovely that you are seeing a difference socially and that he’s much calmer overall. It is amazing what a difference medication can make!

@WesternEasterner great to hear your positive news too about how well things are going on the meds and that the melatonin helps so much. We know a family locally where their dd has had horrific sleep issues but melatonin has worked wonders.

@MissHavershamReturns . Sorry to hear your boy has had a hard time settling back into school and back on the meds. It's just the worst when you know they are struggling.

Did he eat well during the med break? Was he off meda fhe whole weeks holiday?

Hi all, back and feeling a bit better as Thursday and Friday were much much better days in school for ds. His teacher kindly said she was really proud of him yesterday which made him feel better about the week. I also then got a bit more sleep myself, which has helped me feel a bit more grounded and I have a bit of headspace to write on here

@WesternEasterner and @NurseP the weight/eating issue is not going away really. When he has bad days, which I think are more to do with the Autism side than the ADHD side, he doesn’t want to eat much and he has always been really skinny, so I’m not sure that’s wholly related to the meds.

He’s currently a kilo heavier than he was in Feb when we saw the consultant. So in 4 months he’s put on the same amount of weight as he did in the year from diagnosis to that check to. That’s obviously positive, BUT I know he needs to put more on when I can’t physically get more into him!! I don’t want to add food anxiety to his list of struggles so I’m trying to go very gently with it.

He eats a 600 cal breakfast every day which I make for him - various hot foods (eggs different ways, no nitrate bacon some days, toast, live yoghurts, hash browns, potato waffles), he has a snack at mid morning about 100 cals but often can’t manage to eat that, can only manage around 300-400 cals at lunchtime as meds at their peak, has a 100-200 cal at hometime, I try to get 700-800 cals in at dinner time and then he has ice cream for pudding say 200-250 cals. He’s 11 and like a very tall skinny beanpole, moderately active.

Previously we and kids ate a low GI diet, with minimal refined sugar/carbs, minimal processed food, lots of fruit and veg and brown bread, meat only twice a week, processed pork products like sausages/bacon/ham only twice monthly, but I’ve been told to up cals, protein any way I can, which feels odd to me!

Any thoughts on diet or eating tips would be very very welcome.

@NurseP just realised I didn’t explain length of med break - first three days of half term. He didn’t eat more as he was so anxious and had mood swings - this seems to happen with some of his med breaks eg Easter as well.

@Plro and @WesternEasterner so glad current doses are working well! It’s such a rollercoaster for us parents but the no nice to get those wins

then so nice I meant!

It's does feel a bit weird in the food front, DS used to be an over eater and I didn't want to project any issues on him but I'd be doing healthy food, water to drink etc and now I find myself trying to sneak calorific food into him. Sorry to hear he's finding the med breaks so hard, and pleased he's feeling a bit better now..

Interesting that they said the initial flatness is an indication it's the right one, as I mentioned we had that on 30 rode through and now he's doing great on them.

@MissHavershamReturns sorry its such a struggle with the weight. It does feel odds trying to get any food possible in. My son often eats a bit of cake with his breakfast cereal!!!
We have a review soon so hope the Dr is not too unhappy with his weight loss.

Do you think they will reduce meds if weight loss becomes a really serious issue? I do worry about this!

@HauntedPencil we’ve had it on every med increase here, but but other than eating and med breaks my son is amazing on 30. We did titrate unusually slowly - over 6 months.

@NurseP i think they would try a different med, maybe non stimulants. I feel ds wouldn’t cope with a med change and the start of secondary at once