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!

friend’s DD takes it for anxiety so this might be win win for you

also in case your melatonin doesn’t work we get this one which is absolutely amazing

https://uk.iherb.com/pr/natural-vitality-calm-drink-mix-sleep-mixed-berry-6-oz-170-g/72465

@LoveMyADHD this js so promising. while of course we'd like to be able to help 100% with his symptoms/behaviors a 40% reduction would be so incredible. I just feel like things are piling one on top of the other so if we can reduce some I feel like others might come down naturally as a byproduct. Or at least that's my hope. He was able to swallow the pill last night no problem. Fingers crossed we continue with this pattern

Be positive, it might work 😊
did he start already? 1mg?

@LoveMyADHD The doctor prescribed .5mg for the first week to help his system adjust. She said by splitting it if was no longer "slow release" but that way his system might get adjusted easier. next week we'll move up to 1mg.

i have a friend in Canada who's son is on it and her whole life has changed as a result. He's been on since October. He's up to 2mg now and doing so well.

Sounds great!
we stayed on 1mg just for few days, then 2mg for 2ish weeks; yesterday we moved to 3mg

doctor said teenagers are usually on 4mg

bear in mind if there is benefit you get it in about 5-7 weeks so i am hopeful having already improvement is good news

Hope you see benefits soon x

Is anybody else having trouble getting hold of ADHD meds? DS has almost run out & I can't get hold of them anywhere! Put in the prescription request over a week ago with the doctor & it took them ages to process it. Then it's gone to our village pharmacy who say they can't get hold of it, there are supply issues & they don't know when they will have it! So I rang round about 6 different pharmacies in the area before trying Pharmacy 2 U. They do have a small stock, but can't guarantee they will by the time it gets to dispensary. But more promising than anywhere else atm.

So I have gone with that & hoping it works, they have said it will be delivered Thursday/Friday if successful. But DS only has 2 tablets & exams next week! He does have a lower dose from before he increased, so GP said to give him that on less important days. The pharmacist did also offer 2 x 18mg instead of 36, but luckily I checked with GP as he said this would not be suitable as it's slow release! Whole thing is so so stressful 🙈

I feel like I should have acted sooner, but the GP wouldn't issue an increased dose without a letter from the paediatrician which finally came through the other day - 2 months after the appointment! And this is on top of not being able to see him on my app as he recently turned 13 (now reinstated)

I have been in and phoned doctor & pharmacy every day this week. I feel so sorry for older or other vulnerable people who don't have someone to advocate for them & can't speak up for themselves. Getting the medication you need should not be so difficult.

Yes we had this last month with Equasym. It takes them a week each time to say they can't get it, managed to get it in 10mg but I had to get my script changed. It's so stressful!

Is that a different dose to your usual one? As we don't want to go with a weaker dose & have been advised against taking 2 x 18 instead of 1 x 36, which makes it harder too.

We've been advised by the consultant to ask for Medikinet instead but it didn't agree with him so felt that was the best next option. He normally takes 20 x 2 so we've used the back of the old pack to try and sort it out. I've got a script in now so will see what happens there 😭

Sending because this is like a journal
now that I can reference. Today was second full day on .5mg of Intuniv. Haven't seen any obvious side affects. DS didn't want to do anything today so he just watched tv all day. Was easily irritated both yesterday and today. Seems generally just in a bad mood/cranky. Wondering if he is feeling sluggish/groggy but doesn't know how to verbalise it. Nervous about how the schools day will go tomorrow.

@krobhix20 it’s good to have some somewhere to look back for sure. I definitely find it helpful to look back at my own posts.

I can definitely identify on not being sure whether they can say how they are feeling. My ds can’t always explain what it is he’s feeling emotionally/physically, which goes with the territory of his dual diagnosis with ASD.

Hopefully someone else on here has experience of Intuniv and can comment on what they experienced.

I hope tomorrow goes ok for you both.

@confusedofengland and @HauntedPencil really hope you can keep getting access to the medication.

This was posted previously so you’ve probably already seen it, but posting just in case anyone didn’t know about it

https://www.boots.com/online/psc/

Thank you, that's really useful.

@confusedofengland we had a lot of stock issues around Christmas and I found some independent pharmacies would hold stock if I rang them, in case this is also useful info. I ended up driving/ringing around a lot. Keeping fingers very much crossed for you.

As we are so close to the end I’m going to suggest we move across now!

https://www.mumsnet.com/talk/special_needs/5057892-starting-adhd-medication-and-staying-on-it-ongoing-support-thread-for-newbies-and-experts-including-medikinet-equasym-concerta-strattera-and-others

Post

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@ANonnyMice @AndrewGarfieldsLaptop @Bertiemcgertie @Cheesybiscuitsmineallmine @ColonelSpondleClagnut @Freshstarts22 @GG1986 @Hapagirl48 @HauntedPencil @Hels20 @Hopender @IloveGogglebox @KTC40 @LoveMyADHD @Majestic131 @MamaClause @Munchies7 @NurseP @OnePlusOneEquals @Plro @QuinnofHearts @SiouxsieSiouxStiletto @Starlightstargazer @TheWitchingHour @Waythroughwoods @WesternEasterner @Worriedaboutleaving @YearLongChristmas @confusedofengland @dressedforcomfort @fightingthedogforadonut @klayton @krobhix20 @missboots @neonleopard @nightwebs @rhubarb84

i hope people don’t mind me tagging them, just to say this thread is almost finished. It would be great to see you across on the new thread.

@ANonnyMice @AndrewGarfieldsLaptop @Bertiemcgertie @Cheesybiscuitsmineallmine @ColonelSpondleClagnut @Freshstarts22 @GG1986 @Hapagirl48 @HauntedPencil @Hels20 @Hopender @IloveGogglebox @KTC40 @LoveMyADHD @Majestic131 @MamaClause @Munchies7 @NurseP @OnePlusOneEquals @Plro @QuinnofHearts @SiouxsieSiouxStiletto @Starlightstargazer @TheWitchingHour @Waythroughwoods @WesternEasterner @Worriedaboutleaving @YearLongChristmas @confusedofengland @dressedforcomfort @fightingthedogforadonut @klayton @krobhix20 @missboots @neonleopard @nightwebs @rhubarb84

i hope people don’t mind me tagging them, just to say this thread is almost finished. It would be great to see you across on the new thread.

it would be really nice to hear from anyone who hasn’t posted for a while with an update, if you have the time.

A couple of final reflections for this thread. When I started these threads I don’t think I realised all my dc would be entitled to DLA. Having that has made a big difference to us and I would really encourage everyone to apply if their child needs extra care, as most (all?) children with ADHD and AuDHD seem to do.

I am still here lurking around!! My boy is now on 40 mg medikinet xl and a 5mg top up.
Making so much progress at school so really happy with it.

Hi! Not much change here as we haven’t been able to see the psychiatrist to change meds. The current med - concerta xl isn’t doing anything at all and will run out in 3,days. Next appointment in 10 days and hoping to try something else.
how are you getting on?

It’s also well worth looking into whether you would be entitled to an EHCP. One of my kids with ADHD has one and one child doesn’t, but they are really valuable. I wish I had known sooner that children could get them even if they are able academically, provided they meet the criteria and I didn’t realise mental health needs that get in the way of learning are SEN.