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!

Hi, welcome

how old is DS, those dosages seem low
Its odd you never had XL dose to be honest… perhaps it’s good opportunity to give it a go?

Can I get people's views on what sort of dose is needed to be effective. My DS(10) has started on Medikinet XL and we're currently going through titration process. 10mcg had virtually no effect whatsoever. Have moved him up to 20mcg recently and not seeing a massive difference with that either. Would be interested to see how others have fared with Medikinet XL....

He is 10. I think the clinicians felt he was a complex case so ignored the ADHD and concentrated on autism/language disorder/trauma.

To be fair I think whatever meds we would have given him in a mainstream environment wouldn't really have improved things. I feel now he is in the right place we stand a chance on getting things right with the meds.

That said, he has been left on a very low dose of medikinet for a long time. He is under 3 different hospitals and I think the low dose was missed - no-one did anything or suggested increasing it until our last paediatrician appointment in November. A small increase gave us an insight into how things may be - but it wore off quickly. Another appointment this week and I will ask about the XL version.

Yes @LoveMyADHD we were told that when assessing dose 30 plus 10 is considered 40. We were also told this by private consultant previously. Without the top up it was metabolised very fast with rebound and crash about 2pm on, so he couldn’t experience that at school.

@Bertiemcgertie I hope increasing will help. We saw very little improvement at school until ds was on 30

It’s so different per consultant though

Mine is against top ups, I had to convince him. He said they might help but unless you move up on XL you won’t get benefit

Also surely your DS’s top up is in the afternoon… what happens before then? So essentially the “40” is after midday right?

Given the situation you are I personally would suggest 40mg or perhaps move to concerta

I did ask about concerta. Maybe I need to ask again next time we go @LoveMyADHD.

Top up is at 1pm

Yes we have same time. We just started last week, DS has got so much bigger it’s inevitable. Have to say though weekend has been awful due to rebound!!

FYI when ds was in 40 last year he was amazing but decided to bring him down as 30 was good too. We re definitely going there soon….not sure I fancy those top ups

We made the switch to concerta. DS is doing well!

For some reason - Concerta had no effect on DS so we had to stick to Medikanet. I understand they are basically the same drug - so not sure why Concerta didn’t work….

Really interesting messages, thanks everyone. I love this thread.

I suspect the 20mg is too low. Surely adults who are medicated are not constantly having to readjust dosages due to tolerance? I always assumed they would be on a steady dose. We've been fine since May so well over 6 months.

I'm going to do some digging on reddit, they are always a knowledgeable bunch!

Hiya, my little one is 7. ADHD, awaiting autism assessment but strongly suspected. In specialist school after a horrific time in mainstream. Just a bit of advice really as still not consistently dry at night. GP saud to keep going with the reducing fluid intake before bed and waking at 10ish at night to have a wee. Is this something anybody else has had difficulty with? Thanks

Sorry I've had no experience with dry nights, on the dosage for us we only saw a good improvement on 30mg, and that was for maybe 6 months. We've had a lot of issues since September & been on 40 since Nov time (still having issues)

I use to do children's continence clinics waaayyy back when I was a community nurse.

The first thing I always asked is whether the child drank blackcurrant/ribena juice. Purple juices and sweets have an additive in them that cause overstimulation in bladders, that lead to continence.

Next I'll do what your GP recommended which is reduce fluid intake >2hrs before bedtime. Tricky in some kids though! If you're going to be super strict, no jellies or ice lollies.

You could always do what I called a "moon walk" which is where you walk your child to the toilet when they are already asleep. I use to do this with my son when he first was toilet trained. Basically when you go to bed, wake the child and pop them on the toilet.

When I've covered those three bases, that's when we can go into further investigation such as ultrasounds, bladder testing and sleeping pads.

Forgot to ask, are they on ADHD meds? I learned that some meds can block a receptor so children can forget to wee until the medication wore off,

Hey everyone. Sorry to keep chatting endlessly on here. Being a Mum in all of this is exhausting and lonely... so it's nice to offload things to you all!

On Monday afternoon I get a phone call from a specialist school saying that they have seen my son's EHCP and would like to invite us for a visit. I nearly choked because as far as I was aware, we were in the draft stages and we haven't even decided on a school, let alone a specialist school. I was a bit standoffish on the phone; I'm a very friendly person but when I'm off guard I'm a bit shitty! Anyways once I understood what the phone call was for, they emailed me across their details and actually... dare I say it? It seems like the perfect school for DS.

It's a school for neurodivergent children, only 70 in the entire school ranging from 7-18 years. Only down point is that it's an hour rounds trip... but I've heard transport is provided? Not sure on that one.

Anyways we are going to visit on Friday. DS is really excited about a school "with other people just like me". I'm still sad as no one imagines this for their child, but all I want is for him to be happy.

Love you all. X

Oh that is wonderful news @AndrewGarfieldsLaptop . Your post really resonated and I agree with your comment “no one imagines this for their child”. I don’t but I am gearing myself up to the fact it might be better for my DS8. We want the best - and sometimes it is scary but we have to step outside the box. I wish you lots of luck in your exploration of this new place…it’s not in London or the Home Counties is it!??

Nope, I'm over in the West Midlands but I'd like to point out that I am NOT a Brummie 😠 I'm from t'north!!!

Nope, it's been a bit of a grieving process for me, especially as all my friends have ✨ perfect children ✨ according to their FB. However I'm looking forward to seeing the school and coming to the end of the EHCP process. What an ordeal.

I am new to this thread but wanted to say, I have been through similar with my son.

A specialist school was the best move we ever made. It has to be the right school though, and I visited many which weren't right. I was looking for children similar to my son. He had had enough of being different. He went for a trial day at the school (I expect all specialist schools will do similar). When I collected him, he told me that all the kids are like me. At last, he was no longer different. He fitted in.

We are one year into his new school. His anxiety has reduced, he is in himself much calmer. He is more positive. Instead of being isolated, he is involved.

Visit the school, get a feel for it - and if it doesn't suit, perhaps try a different school. There will be one for your son.

As for accepting it, I think probably I am still work in progress too about this new path. But, the more I connect and meet other parents similar to me, I also feel as though that other perfect family part diminishes.

Welcome Bertie!!! We are so happy you are here.

We visited two and I'm pleased you said you were looking at the children as I was too. He went to a specialist school one day a week last year and it was a disaster as he felt so different. I didn't want that again. He said he wants to be around kids with "tight brains" like him. However he did say he will miss his girlfriends.

andrewgarfieldslaptop Thank you.

There were plenty of schools I visited which were definitely wrong.

My son is very sociable though autistic. Many of the ASD schools catered for children who perhaps struggle socially. I knew we were at the right school when I went into a classroom and saw a live lesson. I looked at the other children, and knew my son would be just the same as them.

My son goes to a school which is predominantly boys, but there are a few girls (which I like as my son tends to get on well with girls - he likes to chat!) So potentially there may be new girlfriends! Leaving his old school was emotional, but he knew it was right. He misses his friends, but has found new friends - so I tell him he has a much bigger circle of friends now.

It's hard though and I wish life were more ordinary - when I visit my daughters mainstream school I feel sad he won't have the same opportunities. I guess it is the accepting it will be different opportunities.

Thanks for this, really helpful. He was having blackcurrant so have definitely changed that. I also echo comments from Bertiemcgertie. Go with questions, if you’re worried about the ambition they will have for your child ask them, if you’re worried about the peer group for you son ask them, I can’t imagine you’ll ask anything they haven’t been asked before. I also follow and read the books by Missing the mark and Dr Naomi Fisher, would recommend.

That's it... I wish life was more ordinary. I have a baby daughter and my DS6 often says he can't wait to be at the same school as her 😭

I'll check those books out, thank you so much.