Starting Medikinet - any experts around?

[MissHavershamreturns]

Hi all, we’ve just got a prescription for Medikinet and are looking for the right day to start - my dc who is 10 has been very emotional and anxious so I want to start on a weekend or half term which is now only ten school days away, where I can support if there are side effects as they may be very frightening for dc, given they are currently pretty vulnerable.

The paed has suggested that the most likely effects will be headaches, appetite suppression and difficulty getting to sleep. Is this what everyone found?

Does anyone have any advice on what time to take it? Paed said best to take with breakfast but dc is a very early riser (up from 5.30 am). We currently have breakfast at 6.45 am and then dc is into school for 8 in early Club and is collected at 3.20 but some evening club nights until 4.30pm. It’s the 8 hour version of Medikinet.

So grateful for any advice on what worked and what didn’t

I'll report back regards tipping up - I'm worried about sleep mainly as he struggles to get to sleep at the best of times.

@HauntedPencil that all sounds like it’s going pretty well doesn’t it! Great to hear that largely it’s been positive and no major side effects.

As I say we were very worried about sleep but ds is getting to sleep more easily, for longer and better since the meds started and we do top up. I have to admit this is the complete opposite of what I expected. He is falling asleep slightly later and waking slightly later, but only by around half an hour.

Just wanted to add the early days were up and down for us too, but after a few weeks those evened out a bit.

Forgot to say I also experienced issues with the prescriptions. In the end I realised I was going to have to be way more proactive and I started getting an appointment in earlier and then following up really vigorously as we almost ran out a few times as well. This was when we were still getting all the prescriptions privately.

A quick update on our own Medikinet journey in case of use to anyone reading, now that it’s one half term into the new school year. Now on 30 medikinet XL 8 hours in the morning with a top up of 10 immediate release methylphenidate at lunchtime.

Ds (now 11) has been on the medication for just over 8 months and on this stabilised dose for just over 2 months.

We heard at the school parents evening last Thursday evening that ds is doing quite a bit better with schoolwork. He’s actually managing to complete the vast majority of the worksheets he’s been set and getting on ok with some of the things he used to find the most difficult like the SPAG worksheets in English. He’s concentrating really well and calmer in class. Still over impulsive and silly and still making jokes and comments without putting his hand up, but less than last year.

It seems like a bit of a miracle but he’s caught up on a few areas where he was previously pretty behind.

His increased focus (I’m sure because of the medication) means he’s able to read which was never something he could really do before. He’s found a few books with lots of funny graphics that he likes - Treehouse series etc.

Overall he says he feels much calmer since the medication and he explained that to another local mum and slightly younger child who are considering medication.

No major side effects for us, luckily.

It has been a real rollercoaster over the last 8 months and Dp and I found it a really hard decision to go for the medication, because we were worried about side effects and giving such a young child drugs that are designed to work on the brain.

Looking back I’m so glad we got the medication for ds and we are just hoping this year continues to be better for him. I’m sure there will continue to be some bumps in the road.

@MissHavershamreturns A lovely update, I'm so pleased you are seeing such great results, it gives me hope too! My daughter is having her next review Saturday, she's on 20mg currently and is saying she feels calmer in her mind but still daydreaming lots and still quite hyper chatty and fidgety!

That's so good to hear and sounds really positive - really pleased for you

The dr hasn't written the exact daily dosage on the prescription and they won't dispense it - we are totally out now and going ok holiday for a week on Saturday. ARGH.

Thought I'd mention as another thing to keep an eye on - I'll check them from now on!

@HauntedPencil that sounds very annoying - can you call consultant’s secretary?

Hello! Can I please join you? My son is a big 7 year old with severe learning disabilities, ASD and now ADHD diagnosed too. He has been taking melatonin for about 5 months with good effect and has been started on a titration dose of medikinet. So doing a week of 5, 10, 15 then 20mg. We are starting the 20mg tomorrow so just coming to the end of week 3.
My son has been prescribed this as he has very hyper behaviour, jumping, climbing, throwing , always on the go!
We hope that this med will help to calm him a bit and make him a bit easier to manage!
He is a lovely natured little boy and I do worry that this will change / suppress him ( too much listening to other people who have no clue!) .
Also, I do worry about any possible aggression when the hormones kick in. My son is big for his age and very strong, being aggressive would definitely be a severe problem for us and him.
I guess what I really want to ask is how long did the meds take to make any difference? Was it a gradual change? I read that people often use medikinet to help concentration with school work, unlike my son who is to calm him. Anyone else with a similar child? Thanks for reading!

We are still in the early stages - started 2 x 5 a day which helped and school reported he was much better for about an hour after them - not much side effects but a few nights of emotional/crying etc

Moved to 2 x 10 a day and it went a bit wrong, mainly as school would forget to give the 10 at lunch. He had a couple of larger meltdowns this week and yesterday he had one at school where he ran off which is unusual and he was very upset/ hyperventilating. When it's going well there is a marked difference he's himself but much reduced erratic behaviour/ constant noise etc.

Starting on the one a days this week after a fraught couple of days sorting them and I hope this solves the lunchtime problems.

Good luck I hope it goes well. It was a worry of mine too as he's also quite big and strong for his age and has in the past hit others in school.

Thank you. It's such a worry. I think I feel added guilt as my son would not be able to express if he felt any side effects. I would know if he felt rough but not necessarily specifically what the problem was.
I really hope this can help to settle him down a bit. It could open so many doors to activities that are just not an option for him at the moment.
I have seen no real change at all in 3 weeks. Maybe once we start on the next dose up, 20 mg starting tomorrow it will begin to have more effect? His Dr told us that this should see him through the school day and then we could possibly look to moving to an even slower release one to see him through the whole day.
I just want the best for him. He is such a loving little boy. But the worry about him not eating well ( he is still like a labradore!) And any side effects, mixed with the few shitty comments about 'wanting to change who he is' has got me doubting myself a bit.

Also, reading back through the thread again and it seems my son has started on a lower dose than many others. Any idea why that may be? Is it based on age? Weight? Thank you.

@NurseP welcome to the thread - I find it so useful talking to everyone else on here. Really hope it’s useful to you too.

I’m not an HCP, but they seem to start low and go slow where ASD is in the mix (my son was titrated much more slower than others and this msg be because he has ASD as well and he was very anxious at the time of dx as well). There is definitely an age element too. Some of the younger children on this thread e.g age 6 also began on 5 iirc.

@NurseP i worried so much about losing my ds’s lovely sparky character, but actually he’s just the same mostly. Just a calmer and happier boy.

Sorry to make some random posts @NurseP but just wanted to answer some of your questions.

If you look back at my posts on the lower doses my ds was still very hyper, so you might see much more of a change on higher doses.

We started on 5 given 2x a day so I think that's quite common.

I have just started the 20mg equasym XL and he's still pretty hyper on this one so far yesterday and this morning

Same - on the good days he was himself but just with the dial turned down a notch so he was for eg being inquisitive and chatty at an appointment rather than thrashing around and talking at people incessantly which is previously what he'd do!

Thank you! We start on 20 mg today!

Fingers crossed - I only started the one a day yesterday (20mg) and we went out in the evening so I topped up with a 5.

He had a meltdown in school on Thursday and was still pretty wired yesterday but fingers crossed, are yours 2x a day?

My son is very quiet today, and a bit pale and not really eaten which is not like him. Could it be the increase to 20mg? I think he has a tooth on the move and did not have a good night so I know he is tired. Could the first day of 20 make such a difference?

@NurseP we sometimes find the first two to three days on a higher dose are like this. If you have any concerns that anything is untoward check the Medikinet leaflet and speak to the consultant, but we’ve definitely experienced off days like this with most of the increases. So hard to tell as it’s also the season for coughs, colds, flu etc. I hope he feels much better soon.

Thank you. I do hope if it is the tablet then it will settle when he gets used to the higher dose . He had a bed night last night so I know he is tired. He has refused dinner which is so unlike him! I hope he picks up tomorrow!

What an amazing thread and some really encouraging updates

we’ve been on Medikinet slow release since May, he’s been on 40mg since last few months , he’s 10 yo and since stabilising his medication absolutely on fire!! His friendships , academics , his overall confidence and happiness is out of this world!

best investment we’ve ever done (private wasn’t cheap)

just my two cents in case it helps… we found giving high protein really makes the medication work better and last longer. Specifically we give sausages , walnuts , eggs and yogurt pretty much every day as breakfast along with omega 3 and noticed it can last a good 12 hours… worth trying

good luck all xx