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!

Does anyone else feel that their DC school isn't right for them? I've had the feeling for a while, and today I dropped him off and I'm just crying in my car. He found a teddy bear in the car park and went to hand it in. In the process he accidentally interrupted another child who was waiting to go into breakfast club. The first words out of the teachers mouth was telling him off, and I'm just sick of it. I know that DS in that moment should have waited, but it just broke my heart.

In other news DS yesterday was an arsehole and then I realised about 2130 it was because I forgot to give him his tablets. Mum of the year over here!

@AndrewGarfieldsLaptop I’m just sending you a big unmn hug. We’ve ALL forgotten to give meds. You are showing up day in day out and being there for him, loving him and meeting his needs. To me you ARE mum of the year

I think school stress is the worst, so sending sympathy.

I also felt the school for my little boy wasn’t right. I took him out of school last March and looked around specialist provisions in our area. He started in a specialist provision in September and has never been happier. It’s scary moving away from the mainstream but once you do it, if it’s right for you, you’ll never look back. Has your little one got an EHCP? If I was you I’d contact your local SEN team, tell them about his diagnosis and challenges and the responses he’s having from school and your worries. School legally have to adhere to the Equality Act alongside other legislation and if they’re not making the appropriate adjustments they are breaking the law. Also speak to the manager of the education inclusion team at your LA. It may be that there is another mainstream local to you which is far more progressive and understanding.

We are in the process of the EHCP which I've found a huge struggle. The teacher has really exaggerated DS's needs to the point of no recognition; she states he has to have dim lighting, wears headphones all the time and is academically behind. He failed one test in year 1 and has never had an issue with lighting or sound?

I'm not keen on him going to a specialist school. This current school sent him to one "for therapy" one day a week and it was a disaster. He got bored and went looking for trouble 😭

EHCP stated that it was in the decision process several weeks ago now, but we haven't heard a thing. I really want to move him to another primary close by which is very modern.

I'm worried sick about him today :-(

I just burst into tears 😭 thank you! I'm having a proper wobble today

@AndrewGarfieldsLaptop I completely understand Sending you and hoping you are feeling a bit better after a good cry.

I have sent you a pm.

My son is academically very bright but struggles with the environment of the mainstream. He definitely doesn’t get ‘bored’ in the school, rather feels safe and connected and able to build a far more healthier relationship with learning. You must follow the path that suits you best.

This is reassuring to hear! DS had such a bad experience of the specialist school!

So we've decided to try and move DS to a different school. His latest report card was fantastic, no mention of poor focus anywhere, but it doesn't tell the full story of his school experience.

He said things have changed for him since the assault, he feels very isolated and anxious. He skipped classes one afternoon as he didn't want to stay in school plus he sits in the library on his own at breaks. When I mentioned this to his support teacher she was almost denying this ("oh but I'm sure I've seen him around the school with the other kids!").

He has a couple of friends at another local High school two miles away so we'll see if we can get him in there. I think it'll be a long shot but we have to at least try.

Hearing all your experiences of school life and struggles for your children is not easy reading. I'm exactly in the same boat but with all your words I feel all your emotions and heartache. Sometimes I find this journey I'm on absolutely overwhelming and never ending! Sometimes there really isn't any more adjectives to use to describe how tough life can be with my DS. But thank goodness for this thread as I don't feel so utterly bereft and alone. We have put in for a transfer to a specialist provision within a Mainstream school in our area - low CoIN. Where DS will spend 50/50 in the provision and mainstream. We are hopeful it will spell the beginning of effective support for him and help with his confidence which is dwindling. I have my reservations but let's see. In view of his medication we are definitely not at the right dose. He keeps crashing at 12. Only has a period of 1 hour in the morning where he is able to access whole class work/input. After 12 returns all the inattention and impulse despite being on Medikinet XL 10mg. We have his review of medication on Saturday and we'll be asking for other types of methylphenidate because I'm not convinced by Medikinet. Thank you all for your advice over time. It really is invaluable.

@YearLongChristmas - so sorry to hear of your struggles. I think most of us who have children on Medikanet - it only works if there is a top up at midday. Does your child have a top up at midday/lunchtime?

@Hels20 agree that it definitely only works for us with the top up in place

Also @YearLongChristmas we didnt see much difference at school at 10 mg, so we needed 20 or 30 plus top up to see a big change in the school day. I’m so sorry to hear things are still really hard.

Let me drop off husband at the train station and I'll reply properly to this as I've had the same pickle xxx

Right, husband dropped off for a day of day drinking in the city... wish me luck!

@YearLongChristmas I think we have spoken before about DS's medication dose. We were in the state that every time we increased from the 10mg, DS would have an aggressive episode 2 weeks later. One time he was suspended from school as he hit a teacher. He was on 10mg medikinet. At the beginning of the summer when he first started the medication, he responded so well on it but after a while, his body built up a tolerance and it wasn't effective anymore. It felt pointless taking it. Afternoons were pointless for him as well, and he just spent the entire time reading.

He is now on a slow release medication, 20% released right away and 80% released over the next 10 hours. So far, we are 3 weeks in and its been a success. We have had no dips in concentration and reports back from school are somewhat positive. It's an 18mg dose of Concerta, but its not the brand name... just the standard name. He has a 5mg top up on Wednesdays when he has gymnastics after school, and it works really well.

Definitely ask for a review.

We are all in it together. I feel so alone sometimes as we moved across the UK in 2022 and we know so few people here, and DS hasn't really made a lot of friends at school.

@AndrewGarfieldsLaptop you are wonderful. I wondered whether to switch to the 20:80 split because you have so concisely described my DS to a tee. So THANK YOU. I will ask for this including the top up as it absolutely flawed me!

@Hels20 no he doesn't have a top up and @AndrewGarfieldsLaptop did mention last time to ask for this at his review which I will tomorrow. Thank you.

@MissHavershamReturns thank you. Its hard as my DS is 6 yrs old but he's built like a 8 Yr old. People look at him and expect to have intricate and detailed conversations with him and he can barely sequence a story let alone his day. So it's tricky with medication as his prescriber doesn't want him on high doses because of his age.

We also did a top up back in September, 10mg at 7am and then another 10mg at midday. School refused to give it (DS is only 6) so I had my day split into 3 school runs for about a month. It was hell!

Do we have the same boy? Mine is a giant too!

@AndrewGarfieldsLaptop omg why the hell did the school refuse to give it?? Was that 10mg of Medikinet XL in the AM and PM? How did your son do with that? I genuinely cannot imagine how you did those trips! Supermum!!! Can I ask if there is much of a crash on Concerta from that fast release?

@AndrewGarfieldsLaptop hahaha I have no idea what was in the water back in 2017 but I definitely have a giant in my home! Size 13.5 feet.

Ah DS here has size 1! Husband is 6ft+ and I'm around 5ft8 so I always joke I was never going to have a tiny kid... he was 11lb born!

School were very twitchy about opening the capsule to put in my son's mouth as it's a controlled medication. If DS could take it whole they would have been fine, but because we opened the capsule... nope.

Honestly the person who suffered most from that month of back and forth was baby sister. Her nap schedule was ruined and was very grumpy.

I haven't seen a crash; before with the medikinet I'd notice he would "turn off" around midday and DS says himself that he would stop listening. Now it's around 6pm, so it lasts just over 11hrs for us. DS is 124cm and about 28kg?

@AndrewGarfieldsLaptop yes the long suffering second child tale. I know it well. I have 2 DS. The second was a very early communicator he's nearly 3 and so far presents as neurotypical. He has a lot to say about how little attention he gets. The mum guilt is real. 6 Yr old DS is 122cms and 22kg. He is all muscle....try as I might I have not been able to get either boys "chubby" I blame their father. I will ask for the other release medication and report back. All I think of is.....how the hell is my child going to sit still in January when teaching becomes more formalised.