Starting ADHD medication and staying on it. Ongoing support thread for newbies and experts including Medikinet, Equasym, Concerta, Strattera and others

[MissHavershamReturns]

Another thread for us to support and encourage each other in Medication journeys for our children, right from considering medication for your dc and the earliest days of trying the medication for the first time. Lots of information here also with potential medication switching and the path of moving up dosages until the right stopping place is found (titration).

All information on here is from a parent experience perspective. I am definitely not an hcp, just a mum who is happy to share my family’s ultimately positive experience with the medication, through ups and downs. Others posting here are also just doing so as parent ‘experts by experience’.

That said, the parent knowledge on here is phenomenal and there is help on 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.

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.

As parents of children with special needs we can sometimes need a bit of support ourselves and I found this book very practical and reassuring on self-care and how to manage SN parenting. The book I wish I had had in the earliest days of having an ND child: Joanna Griffin, ‘Day by Day: Emotional Wellbeing in Parents of Disabled Children’.

This is thread 3 and thread 2 can be found here: https://www.mumsnet.com/talk/special_needs/4800866-starting-adhd-medication-and-staying-on-it-ongoing-support-thread-for-newbies-and-experts-including-medikinet-equasym-concerta-strattera-and-others. 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 these are good places to read back to see a range of ways that meds journeys can unfold.

I’m sure thread 3 will be the best yet, so welcome one and all!

Unfortunately we can only get it from the hospital pharmacy, it’s the only place the Child Development Centre here will prescribe to 😔

Boots and Superdrug cannot get Equasym at the moment. I called 83 pharmacies last month and only managed to get half the prescription.

Am about to start again on Monday for the new one (change in dosage) and spoke to Superdrug on Friday who said Equasym totally unavailable, Concerta available in all strengths.

I'm starting to think we should try Medikinet as it's so easily available, but not in the middle of GCSE exams...

@OhCrumbsWhereNow you’re in the middle of GCSE that’s awful !

we use this pharmacy they are usually very good with stock and deliver all over the country perhaps worth trying https://www.zenhealthcare.co.uk (we use Knightsbridge one )

@LoveMyADHD that pharmacy look very interesting. Thanks so much for sharing! Do they do both nhs and private prescriptions?

Hey @MissHavershamReturns ! We use them only for the private ones (the ones we re trialling before sending to GP share care), we’ve also used their delivery service they’re pretty good(same day!)… but I am pretty sure they do NHS too

we also used this https://fitzroviapharmacy.co.uk where they ordered us meds next day (delivered straight home )… they definitely do NHS!

x

Thanks so much for these links @LoveMyADHD. We are having medication supply issues across multiple meds (not all ADHD) as a family at the moment and I’ve had to swap to another HRT product with no warning, so it’s really good to have these ideas.

Bless you! Hope it’s sorted !!

Hi all,

Im hoping for some advice, my son has ASD and ADHD, age 6, he started on Methylphenidate, 6 weeks ago.
He’s currently on immediate release tablets with breakfast and lunch, he is able to focus more in school, and is less hyper, however the rebound we get when he comes home from school is absolutely awful.

He is impossible, throwing things, screaming, hitting, as well as very hyper, had anyone else experienced this? Did it improve?

Thanks in advance x

ds took a good 2 months to get over the come down.

My 7yo actually has 3 x 5mg IR as the one at 2pm gives him the bump he needs for early evening activities.

I'm also considering adding a non stimulant as DS is a bit emotional after it leaves his system

@Mrburnshoundthank you that really helpful, I guess I will have to give it a bit more time to see.

We are supposed to be moving onto the slow release ones next week, so I’m wondering if that will help.

Yes.

Takes about 3 weeks to settle down.

We've stopped taking long breaks in holidays to avoid having to go through it all at the start of term each time.

@Billythebear for us sadly it never settled it got worse when we upped the dose one final time … he got in a very scary mode worse than his worst adhd days

if it doesn’t suit him don’t worry there are other meds he can try

Thank you, did you manage to find another medication that worked? Or did you stop all together?

stopping is not an option sadly as he’s in secondary and work is tough

hes been on Elvanse since 3 weeks ago and he’s doing good (for now) , more focused and calm and the come down is so much easier
cant believe we didn’t try earlier

you can definitely try that or the short release version of that particular drug … much more gentle !

@Billythebear I’m so sorry to hear things have been so tough with come downs from the medication. How have things been today?

Checking in, we still haven’t 100% settled on a dose for DS. We’ve had to make peace with having whichever generic methylphenidate brand is available unfortunately, as I thought Medikinet was suiting him better than Tranquilyn but we could get it anywhere!

We are currently using 20mg slow release, and previously it was 10-15mg quick release.

Has anyone noticed social anxiety whilst on the meds? DS becomes very withdrawn and shy around people he doesn’t know so well whilst medicated. I think he’s ok in school, his teacher has said he’s fine anyway, and at clubs he seems ok because he knows the children and coaches, but in social settings with unfamiliar children and adults, he seems very withdrawn socially. It’s so tricky because in terms of his hyperactivity and defiance that is really problematic in the mornings without the medication, the medication has been a game changer. But I don’t want it to change his personality socially, he’s always been pretty relaxed and fun (too much often, but never socially anxious).

@impossibleimposter really sorry to hear you’ve been struggling to get consistent meds. The swapping sounds very difficult for ds and you. I haven’t experienced the social anxiety, but what did happen with ds was that his other struggles became much more noticeable as his adhd was more under control. Hopefully someone with experience will be here in a minute.

@LoveMyADHD @addwardrobe @AllGonePeteTong1 @Billythebear @AndrewGarfieldsLaptop @bunnykitten @changedmyname24 @Chickenpieformytea @chillberry @CoffeeCakeAndALattePlease @CompluterSaysNo @confusedofengland @Custardslice3 @dimples76 @DungareesTrombonesDinos @Falcon1 @Fedupofthis78 @GC12345 @GG1986 @Halloumilover55 @Hapagirl48 @HauntedPencil @Hels20 @impossibleimposter @Jedstre @jumpintheline @Kaffiene @klayton @krobhix20 @macap @MintAeroBubbles @Mrburnshound @needaname19 @Neurospicythree @noideaoffuturenow @NotLeavingWithoutTheSpringRolls @Nursingadvice @nuttyroche2 @YearLongChristmas @xSilverandcoldx @Whereisthesunny @Veebs21 @user134276 @Treeinthesky @TinselTarTars @Thanksforthat @TeamPolin @sundaysunday2024 @Summer70 @SquashSqueezee @Scattery @SameyMcNameChange @rhubarb84 @pizzaonawednesday @OnePlusOneEquals @OhCrumbsWhereNow

I hope everyone doesn’t mind me tagging them, but I’m really concerned about the upcoming SEN changes in schools and I wondered if this was something you would all appreciate a heads up on. They are talking about taking away all Education Health and Care Plans in mainstream schools.

There is a petitiom which Special Needs Jungle are asking people to put their signature on. It’s in the petitioms section here or you can find it on the SNJ website. I’ve done it and I know lots on here either have a plan or are thinking of applying for time, so I wanted to let everyone on the thread know who might not have seen it.

Sorry lots of typos in there - when I said I’ve done it I mean I’ve put my name to it! Applying for time I meant applying for one.

@MissHavershamReturns will definitely be signing this. I'm absolutely enraged 😠. Thanks for the pin.

Thanks so much @YearLongChristmas. I’ve shared it with friends and family and I’m sure you will be doing that too!

Thanks @MissHavershamReturns for the tag, will be signing.

Yes I have heard that about the meds too. I’m not sure whether DS also has ASD as well, it’s entirely possible I’m sure as there’s so much overlap, but all of his issues are explained by ADHD and DCD which he has diagnosed.

It’s put me in two minds about when to use the medication, I found it quite sad today seeing him a bit withdrawn and clearly on edge a bit. He did warm up eventually but I also wonder if that was actually when the meds wore off!

@impossibleimposter that does sound really tough to consider. Mine has AuDHD and initially it was hard on the meds because you could so much more see the autistic traits. But for him we have to keep him on as with medication he is learning so much better and managing school. So he has to stay on.

Thanks also for signing @impossibleimposter and if you have time to send to friends, family and other SEN parents as well that would be amazing.