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!

@HauntedPencil funnily enough we saw the difference at 10 but school didn’t. They only saw it at 30 really.

@QuinnofHearts when is your next appointment and do you have any side effects much that would weigh against going up?

That's good to know, thank you. How long did it take you to notice a difference?

Next review in 3 weeks. Nothing as yet, a bit of a reduced appetite at teatime (so I've switched our main meal to dinner time instead of tea time)

It's a weird one isn't it, I think the one thing we noticed was that he had this verbal tick thing where he would beat box very loudly and that totally stopped, to settle properly I would say it took a fair few weeks each time. 6/8 weeks on the 30 Mg. And for a few of those weeks he was really withdrawn and that was difficult but he turned a corner and had an amazing few months on them ( before the end of summer term itis set in!)

Thank you so much for responding. We are feeling so alone at the moment. He's on 10mg and I've noticed we have stopped chewing on everything. We have also sat sit to watch TV.

@QuinnofHearts I’m sending you an un mn hug in case that helps. I completely understand what you’ve written and choosing to medicate was one of the hardest things I’ve ever done. I was sort of hoping for a Eureka moment at 10 mg but it was lots of little things like being able to concentrate just a little better, no longer swinging round poles on the tube etc.

At 30 now the difference is radical. He can manage at school most days where previously he couldn’t. He can do homework in a way that was impossible before and can control his impulses around jumping and making lots of noise. I really hope it will be the same for you.

Sending some

@QuinnofHearts also I know I always say this, but have you read the medication book I mentioned in my op? I found it so calming and there are many many parental stories in there so it makes the experience we are all having feel much more normal. I would really recommend it.

If if would help, please feel free to post your journey on here as so many of us have. Would love to hear more about him and what led you to try the medication.

My eyes just welled up reading this, thank you so much. With the 10mg we have noticed little things but when we did some homeschooling yesterday we still had the impulses of leaping about the place and hitting me if we didn't like an answer 😭 baby steps. I think we will need to increase!

I'll check that out now! It has been a big decision.

DS is 6, and since he started education has been just... a mess really. He started nursery a week before lockdown. I'm a ITU nurse, so I went away to work, and he stayed with Daddy. He struggled with this a lot, but fortunately for him nursery went from 60 kids to 6, so he was okay. When the kids started filtering back in, he would get frustrated and upset. Everyday was some form of "emotional report" and I got sick of it. He had speech therapy... over the phone.

Start of primary school was awful... his baby sister died a week after he started and as you can imagine, I was a mess. Then a few weeks later, my Papa died. Bless DS, he spent a lot of time with Daddy and my MIL as I could barely cope. We made the decision to move to the West Midlands to be near MIL and we moved house and school. That transition to the new school was hard, I was in there most days as he was having emotional meltdowns. He then had some surgery, so it feels like he only got into the groove of school in the last 2 months.

Beginning of yr1 he had play therapy which was a success. School were still struggling with his lack of attention; he walks off during lessons (after completing his work) and often will hit other children as he can't control his emotions. We were told he was dyspraxic. School suggested a specialist school for one day a week, I was very against this but they said if I didn't comply then future funding may be withdrawn. So essentially we were held hostage! He hated it, we hated it.

Oh I also gave birth during this time to baby DD!

It got to the end of yr1 and husband went for a stay and play, only to find that DS was in isolation (again) for not behaving. Husband had enough and I decided to do something about it. DS home life for the last 18 months has been the most safe it has ever been, and I have always suspected ADHD. We went private, got informed that he has ADHD with dyspraxia and anxiety, with a few ASD traits. Commenced on Ritalin 10mg last week.

DS is a beautiful boy who has been through so much. He adores his baby sister and loves being at home. He hates school. If I could afford to, I'd homeschool him but I can't. We struggle with impulse control (hitting, lashing out, biting 😭) and keeping attention.

I feel so lost really, I'm sick of everyone else having perfect home life and perfect kids. I lost everything in the space of a few weeks and I've rebuilt myself up again, only for DS now to be sad and struggle.

The school report that they sent to the private assessment was hard to read, they said he doesn't have any friends :( I beg to differ as we always find a friend or someone at the park. However a lot of parents don't talk to me, and I am so anxious.

Sorry for this ramble!!!!

Just wanted to add that I always felt like I could take DS anywhere, he was never too much bother and I could handle it. I've now learned that was me just not knowing any different and just "getting on with it". We always seemed to manage the cinema, but shops would often be a stressful experience as he would be rushing me or talking at me, I've got new baby fussing in the baby carrier and I'm trying to remember what we have in the fridge!

He's a very clingy kid too, I've put this down to covid but it's me or nothing. I usually work nights as I'll go when he's asleep and return before he wakes up.

ASD side of things; the only thing that stands out is that he doesn't like to be touched by strangers. Me and Dad can touch him and hug him, but if for example, an old man tousles his hair... he will be like "no thank you!" very loudly.

Oh and another thing; when I told school about the ADHD assessment and the possibility of medication, their response was "oh he will be the perfect child then!" Erm...

@QuinnofHearts it isn’t a ramble at all. I’m so sorry to hear you have been through so much and I’m so sorry that you lost your lovely daughter and your previous father. You’ve clearly been through an incredibly difficult time and while needing support yourself and stability are actually supporting your ds through a very tricky time while moving, working and having a new baby. That is such a lot to go through

I really hope the medication helps. Everyone’s journey on here has been different, both up to the diagnosis and after the medication, but my ds was in crisis when we started the meds and now for the first time he is managing. I really hope this will be the same for you.

I really hope your DS is doing well now, and thank you so much for your kindness. I'm just having a cry as I feel so lost this week. It's the summer holidays, I'm trying to navigate and entertain DS, but also reassure him that he's doing well and to tell me if he feels not right. Poor DD is only 18 weeks old, she just plods along!!!

Thank you for listening. It's been a rough ride. We have survived!

Something else to share @QuinnofHearts is a wonderful book about our own well-being while we are on this journey. So practical and it made me feel really ‘seen’. I have gained so much from reading it, having put it off for a while. The book is Day by Day by Joanna Griffin and you can get it on Amazon. She was an nhs psych first, then had a child with SN. The book is so helpful in understanding why it’s so hard and tiny things we can do that may help us. Just an idea.

@QuinnofHearts you sound like you have been incredibly brave. I have experienced that nurses are often amazing at resilience and have written the book on it!! Sometimes crying helps

I've added it to my basket!!!

I'm way too good at being resilient now! But it helped handle my son's diagnosis a bit better!

@QuinnofHearts you are where we were nearly a year ago. We are on 30mg now and a 5 mg top up. I use the calpol. Looking g back I can't believe the progress he has made.
Hold on tight. Easier times are coming for you. ❤

Calpol seems to work for us too. We attempted with Nutella but it seems too thick? Okay, that's reassuring that others are increasing. How long was it before you asked to increase?

@QuinnofHearts , we had a review every few weeks and just went up 5 mg at a time.

Perfect, thank you. X

Quinn I'm so sorry for your losses - what an incredibly difficult time made so much worse with lockdown. I hope the meds help - we've found they've help a lot on hitting which DS was very prone to, and just so hard to deal with day in day out with the feedback and feeling the other parents annoyances etc.

He's day to day absolutely loads better but we are just still having these few weeks here and there were it goes a little bit south.

We started on 10 20 and to 30 over 6 months and we've been on 30 8 months ish now. We've been lucky DS is keeping within the weight tolerance and no breaks suggested. I hope it helps him. My DS had no friends at that stage, they are also prone to being socially a bit immature and at 6 I really noticed all the other kids had stopped giving each other a poke here and there and it was always " at your age you should be stopping" a mixture of meds and generally maturing a bit and he's a little group now. He's much better socially

PS sounds similar to us, my DS was no bother whatsoever before school. It's so much worse AT school, but he's pulled through and enjoys it.

This is reassuring to hear. DS states his best friend is me and his baby sister, which breaks my heart. However he is very popular with the girls in his class; we have never had a hitting incident towards a girl. Only boys.

I hope the hitting stops. I hate it!!?

He's got to really really be pushed to hit now and rare - but he usually has quite a big meltdown when things get that bad. We've had three bad ones this year. This is what he is trying hard to stop, working on removing himself from a situation before he goes into boiling point, whereas before it was a lot more regular. Having a diagnosis helps hugely as he can make sense of why he finds this hard and before he just felt like a bad kid.

The hitting is the most stressful thing for me by far. When he was 6 he was hitting a lot..

This is so reassuring to hear. The hitting is a very frequent thing with DS, get too close and he will whack you. A few weeks ago I was called into school as he apparently wasn't allowed to wear his ear defenders due to a safety issue (???) and when I got to school, with newborn baby in my arms, he hit me. Spent 45 mins in the car having a cry after that one.

It's been a week on Ritalin and no hitting.