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!

Hope everyone had a good NYE?

Happy New Year everyone! X

Interesting, I am guessing it’s all relating to managing the “rebound” effect we’re usually referring to which actually seems like withdraw symptoms

this is interesting and highlights the need for meds break: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3036556/

so probably slowing down as you did is better than quickly cutting it off , as with any drugs addiction, it’s just that we never consider it as such

Happy new year all!

Thanks for that link @LoveMyADHD , interesting read. A reminder that absence of evidence for tolerance/dependence isn't the same as evidence of absence! Definitely makes me think that continuing with the med breaks is a good idea.

Medication break going ok here. One of the more endearing ADHD symptoms is that he does. not. stop. singing. Often, in I'm Sorry I Haven't a Clue style, it's one song to the tune of another. I find it cute and hilarious. DH and little sister find it... maddening.

Ah we have similar with singing but thank God for my own AirPods 😜

med break good here too, I read a study about electrolytes and impact on dopamine transporter ( adhd culprit) and after I gave DS an electrolytes drink and some Himalayan salts for two days he’s been bloody amazing!!

Not sure I recommend though as it has sodium and depends on the kid but sharing is caring ….

@LoveMyADHD would be really interested to read that!

DS has been having a diet Coke in the middle of the day for a caffeine hit and that seems to help. He's bloody awful for the first hour or so in the morning because he just needs to be 'go go go' and the rest of us don't want to be up before 6am... So by the time we surface at 7-7:30 he's been watching TV or playing on his Nintendo for an hour. He's then VERY disregulated and hard for until he 'comes back down'. He's absolutely fine if he uses screens later in the day but not if he uses them first thing. Honestly he's going to end up being the sort that gets up at 5am to go for a run or a 20 mile hike before starting work.

We let him have TV/Nintendo in the morning as otherwise he wakes his brother, who he shares a room with. We tried making him stay in his room till 7 and said he could only read but of course he was up and down changing books, ordering books by size or waking us up to tell us about an amazing fact he'd read. So we were all very disturbed and unfortunately my youngest son is a grumpy sod if he is woken up before he's ready. He on the other hand will be the sort that lazes in be till midday...

If Nintendo works you have to use it, my dear! Whatever works, I buy!

electrolytes/sodium study here : https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8900711/
But it’s quite a common theme for any psychotic disorders

DS always prefers salty foods to sugary so it’s very obvious he’s low on sodium. Dopamine transporter needs sodium to work properly so it’s obvious why electrolytes drink and Himalayan salt worked… but as I mentioned giving sodium might not be the best for all …

I joke this about my DS too. We have often done our 60mins of exercise of the day by 9am as he's just up and ready to go by 7am.

My DS also loves his Nintendo, but we honestly can't use it past 4pm. He will struggle to wind down and becomes awful in mood. He has it for 90mins in the middle of the day when Baby Sister is asleep, so can have a cup of tea in peace.

Been speaking to an independent EHCP service today; I took some of your advice on here saying not to deregister DS from school. I haven't, however I won't send him as yesterday he told me that he would "rather die than go into school, Mrs X makes me so sad" and honestly my heart broke. The independent line was really informative, so we are going to look around schools next week once they are open. For the meanwhile I'll keep DS at home.

@AndrewGarfieldsLaptop what Year is he in? Would you consider private?

@AndrewGarfieldsLaptop definitely look around other schools. Some are wonderfully inclusive. Ask to meet the sencos and you'll get a great feel for it. Where in the country are you based? Do you know any local teachers? They are often gold mines of information.

Year 2. I wish 🥹 I spent the last of my inheritance of getting DS privately assessed. In fact, I'm not even sure where the nearest prep school is. When we use to live in Nottingham, we lived right by one!

I'm near Birmingham (but I ain't a Brummie, I'm just a lost northern who married one!!!)

Ideally I'd like him in a supportive mainstream, but now I would consider specialist as long as his mental health is supported. He saw a classmate in our local supermarket, and got so upset. I have no clue what's happened this term but it's messed him up good and proper.

@AndrewGarfieldsLaptop I'm going to message you as that's not far from my neck of the woods!

Ok so we had ten days off meds and DS was pretty much fine. He was wild first thing in the morning but after the first hour he was genuinely ok for the rest of the day. His executive functioning was abysmal but his behaviour was impeccable. His weight is back up to just above 25th %ile which is where he always used to be. We will definitely be doing meds breaks again.

BUT and it's a big but, since going back on the meds he's been wild. First thing in the morning we have tantrums about there being nothing to do or watch (this is at like 6am.... 🫠) and he's being rude and grumpy. Then in the evening once the meds have worn off he's wild. Rude and silly and quiet frankly, he acts like a total twat. We didn't have any of that while he was off his meds but now he's back on them, we do?!

Is this just him readjusting? Having never done a meds break, I don't know how the usually go.

Before the meds break, mornings were fine and we could tell when they wore off in the evening as he'd get a bit silly, but this is quite different.

Definitely readjusting we definitely have this too, but meds break worth it (where humanely possible) mainly for the brain to rest and avoid tolerance/dependence so massive well done x

@WesternEasterner we get these odd symptoms when going on/off the meds. We are transitioning back on at the moment and poor ds is having headaches as a result. But consultant stressed they are important in his view to try to prevent dependence. He is hoping ds will be calmer at school again after this break.

Hi all - just reaching out to this lovely board to find out if anyone else has experienced the following. Am sitting here crying….

DS is 8 and in mainstream with a full time 1:1. Apparently at school he is fine. But home is another story (I know that there is the whole issue of masking - we also have another son who has additional needs and both are adopted). All DS8 wants to do is play on iPad although he does like being on scooter and bike. We have tried play dates but he really really struggles - and can cope for about an hour but then he gets bored. He has NEVER been invited back to a friends and has not had a birthday invitation for ages. He is apparently a “very sweet boy” at school.

At home, he just calls himself names - “I am a fat, lazy pig.” “I am an ugly boy.” It is constant. He is just so difficult to manage and despite therapeutic parenting, he is always saying how much he hates us etc. Then at night time he can be a v sweet boy again (although getting him up to bed is a challenge).

he also hates school.

he is on Medikanet 15mg in morning and a 10 mg at lunchtime. We have also just added Intutiv 2mg and he also takes 1mg melatonin a night. The melatonin is a life saver.

Has anyone else experienced this utter negativity? Anyone any thoughts as to whether the meds are causing it??

Bless your little one 😭 I know that anxiety and low self esteem is part of neurodiversity. My son has awful low self esteem; he says he's not good at everything, he struggles etc. absolutely breaks my heart

@Hels20 I’m so sorry that your lovely ds is is going through this and also that you are having to deal with it as I know it’s very hard. We have had similar with our ds as well and there really is hope that things can improve as in our case it was temporary and while it did go on some months it then calmed down. We had it before meds and counselling for ds really helped.

Are we all ok? I've pretty much had the worst week of my life. DS refused to go back to school for the first time ever, he's said he would rather die. He didn't even say that when his sister died. School called an urgent meeting and stated that they also don't want him back as they can't manage and said that he has no friends and the children don't like him. It's broken my heart. They have recommended a specialist school, but the one we contacted today stated that he doesn't fit the criteria and they need to contact the LA. Current school said I'm not allowed to homeschool and want him in on a reduced timetable for 2hrs a day.

Last time I cried this much was when my baby died. This was meant to be his year, medicated and doing well. But school aren't supporting him and he feels so confused.

On the pro side, the week of homeschool and online learning we have done has been really good.

Hi @AndrewGarfieldsLaptop so sorry to hear that. No experience or advice to offer other than that it really sounds like the school is the issue, they sound awful frankly.
I can't believe they've both said that they don't want him back, but that you can't homeschool!
I know finding another school is going to be a pain, and as I say, no experience to offer. But from everything you've said, just getting him into a new setting, whatever it's is, could be transformational.
We have friends who were in a similar situation but with a NT child, but for some reason the school seemed to have given up on him and decided he was trouble, and of course the child was miserable there. So they changed school and it's been a total transformation, the new school say they don't even recognise what's on the old school report.

@AndrewGarfieldsLaptop I am so sorry to hear about what you’ve been through this week. I’m sending you an unMN hug and a huge amount of sympathy. My ds was in mental health crisis two years ago and I have been told similar about DS’s friendships in the past and I felt sick to the stomach and so upset, so I know just how awful it is. I know you know this, but please don’t forget how much can change for our children in the right setting and when they are with their tribe. My dc is now in a much better place socially and mentally and has a friend.

I am not sure whether the school is allowed to say you can’t deregister. I am absolutely not an expert but I had thought this was only the case for a child in a special school with an EHCP, where I believe you need permission. I think some independent advice will really help you know your rights here. I would really suggest speaking to Sossen or equivalent again. I know you won’t take any action on deregister without getting advice.

I’ve also had an absolutely awful week so I understand and you are not alone

Ok @AndrewGarfieldsLaptop ive found a possibly useful link for you.

• ”If your child is in mainstream school, you can de-register by writing to the headteacher saying you are intending to home educate. The school will notify the local authority but you do not need permission.
• If your child attends a special school, you will need to get consent from your local authority.“

https://contact.org.uk/help-for-families/information-advice-services/education-start/education-learning/attendance-absence-medical-needs/home-education/

Contact are an amazing charity if you haven’t come across them before and they have a good helpline.

I am so so sorry you have had such a rubbish week @AndrewGarfieldsLaptop . It’s so
awful to be told that the school don’t want your child and did they really have to put the boot in and say he had no friends?? Some schools are so much better at dealing sensitively with these matters. What adjustments have they made? I can’t bear to read (and hear in your post) the pain you are in. If they want him to go on a reduced timetable - this is actually illegal. However, despite it being illegal, we actually did this for 2 years with our eldest DS. DS would go in at 11am and go in at a break so he could go in to a classroom having had a run around. In the morning, he would do some art, or go for a long walk, and we would also do a bit of maths or reading. He did manage to turn it around - it really wasn’t ideal. But he managed to stay in school. It put huge pressure on family. My heart goes out to you.