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

@KnottyAuty that sounds good! Sorry for slow reply as RL has been incredibly busy here! How did he go on the 20? Any side effects or all good? Are School seeing any difference there?

DS has been fine on the 20 and not had any side effects at all. I think we are going to ask to go up to 30 as the impulsive behaviour while better is unfortunately still continuing. I went into school for something and saw ds is still calling out a lot in class and I wonder if a higher dose still will help him. I wonder if our paed has been unusually slow with the titration because ds has asd and a past history of tricky sleep.

We hope to go up to 30 next review!

@MissHavershamReturns no worries - RL is feeling a bit relentless here too. Our Dr told us that they were expecting not to increase DS' dose because of his ASD and eating issues. They are advised to go super slowly. I think there is maybe an increased risk of self harm (the Dr asked several times if there were any thoughts of suicide rather than explaining that this was a risk ifyswim). So I am happy to go slow as I don't think any of us could cope with that in mix along with everything else. But at the same time want to press on (like you) because the benefits are reducing the other difficult parts of life.... I did catch myself for half an hour feeling content and with not much to do, and thought that this must be what life feels like for people whose children are happy and enjoying school. I was brought sharply back to reality with a phone call from DD's school and an email from DS'..... but on we go.... have a lovely weekend

@KnottyAuty I do know exactly what you mean. Before ds has his meds in the morning there is about 1.5 hours of waking time when we see how he is unmedicated. I find myself really really noticing the difference. He’s SO much better with meds.

Hi everyone, thought I would update a little on our situation. She's been taking 30mg of Equasym but it's not really helping. So we're going to switch to Elvanse. The journey of trudging along continues! It's hard though. Glad to be here on the thread, sorry for going awol.

@Fluffyslippersohyes I’m sorry to hear you aren’t seeing improvements yet but keeping my fingers very much crossed for you for the Elvanse

@Fluffyslippersohyes I hope you are managing to take care of yourself at least a bit. I’ve personally really found the meds an emotional roller coaster. It’s a big decision, then you stress about potential effects. We see improvements at home which are massive but school doesn’t. It’s a great help but not a total fix, or not for us yet at least.

Hi everyone - occasional poster but haven’t for a while.

our DS7 has been on Medikanet for 12 months / started off at 2.5mg and now at 25mg a day - 15 mg in morning and 10 mg around 12.30pm. Lots of improvement at school but he does have “crashes”.

He can now swallow tablets and I am wondering if a slower release tablet might be better - to avoid the dip in late afternoon.

has anyone switched from Medikanet to something else and found it better?

I posted on here before when my ds was on a stimulant but it was a while ago, I just wanted to update, I thought it might be useful to others where a medication doesn’t work / aggravates the symptoms etc. I’ve trawled the internet for years so I thought if the post can help one person!!

My 8 year old ds has a severe adhd diagnosis, (asd, moderate learning disability and anxiety etc) he goes to a specialist school, his specialist school and CAMHS said his adhd is at the top end of the scale they are used to seeing, his special school said they don’t have the expertise to deal with ds adhd and they have all sorts of kids, ds is in an autism and adhd class there, so made me really panic that he genuinely was one of a kind and nothing would help him.

Methylphenidate for 8 months made him worse in my opinion. His anxiety was intensified and his mood swings were horrific. School complained every day about behaviour, the emails I got were relentless and the phone calls were at least twice weekly, and he was on part time hours (in SS!)

He’s been on atomoxetine (9 weeks) and he’s getting on great. Hes only on 18mg too, that needs to go up next month. (He’s also on sertraline for anxiety but only started this 3 weeks ago so don’t think that’s in the system properly yet)

He’s had star of the week 2 weeks running, we’ve been getting postcards home regarding good behaviour. (This is unheard of for ds and he’s about to go in to year 4! he’s always really misbehaved at school since nursery age!) his teachers are absolutely delighted.

I had his annual review last week and they couldn’t speak more highly of him. Last annual review for reference was mostly spent talking about ds smearing his shit on all the class furniture!!!!

At home I don’t think the changes are as drastic, but his mood is overall more levelled out, he is still misbehaving but I think that’s his age! We went strawberry picking at the weekend and rather than him run 4 fields away and me shout like a banshee and snap my ankle chasing him 🤣 he picked his own full punnet and stayed beside me and was fantastic in listening. We then went to the park for an ice cream and he played on the park which he can usually only do if no children are on there, but when we went there were a few playing, and he didn’t push any 2 year olds off the slide which was a regular occurrence before!

One thing Ds very experienced specialist teacher said to me which is very worth keeping in mind. The medication only helps them learn strategies, it’s not ‘oh take the medicine and all is solved’ it’s just a tool in aiding the child to learn how to behave. I always keep that thought at the front of my thinking!

I think with ds, or I’m hoping now with ds, he can now start to learn all that we have been trying to teach him instead of banging our heads off a brick wall!

@danni0509 that is absolutely wonderful for your ds and for you! So happy for you - this will be so life changing for you all xx

No experience of swapping to share but I think Medikinet comes in slow release so you might be able to keep the manufacturer but change to a slow release formulation? Only thing is that Medikinet is 50/50 split. Equasym is 30/70. You choose the split depending on when he needs the boost most - in UK schools it seems like Equasym might be a better fit but I get the feeling it is more expensive so offered less frequently. Good luck

Thank you @KnottyAuty x

Thanks @KnottyAuty - when you say 30/70 - what do you mean? As we have self funded, I would be prepared to self fund the change in medication.

@Hels20 sorry - it is how the amount of medication is released over the day as a % split. So 50/50 means 50% in the morning as instant release working within an hour and then 50% as long release lasting up to 8 hours in total from point of taking the pill. The long release part is exactly the same medication but in the form of little beads which are coated with a shell which is broken down by the digestive system slower than the instant release part. So you have to make sure they eat a good breakfast and try to eat at lunch even though they may not quite feel like it so that the meds don't get absorbed too fast

@Hels20 we paid £38 for a month of pills at 10mg and £68 for two boxes to get the dose of 20mg. We got 2 pills so we could reduce the dose if the side effects were bad. No side effects so far. I hope the single pills with 20mg are cheaper because if we have to add £38 per month to our bill each time we go up a dose this could get bliddy expensive...

Sorry to derail the thread a bit but our DS is in Yr 2 at a state primary. It hasn’t been optimal and unfortunately his class has quite a lot of high needs children in the class for various reasons. At a pinch, we could move him to a private school which prides itself on being non-selective. When I spoke to the head, he said that the school has 3 other children with ADHD.

I have been wondering if moving him might give him the opportunity to flourish - he is about 9 months behind where he should be in 2 things and slightly above in 1 thing.

has anyone had success in a mainstream independent? DS can be loud but I think the smaller classes would provide less distraction for him. Any thoughts wise MNers?
X

Hi @Hels20 I’ve sent you a pm about a child we know at a similar sounding school.

Are you taking Medikinet immediate release or XL 8 hour in the morning?

We were told by paed that if crashes with Medikinet XL 8 hour are not helped by a 10 mg top up then it’s worth switching to the 12 hour, depending on the age of the child.

@AlwaysFireFighting My DD is the same. High school has been a bigger challenge. Offered meds but so unsure.

@MissHavershamReturns we are taking Medikanet XL in the morning. I didn’t realise there was a difference. What is the difference?

Hi @Hels20 there is also an immediate release version which is called medikinet, rather than medikinet XL which does the slow release.

If you have the 8 hour version of XL there is also a 12 hour version I believe which our paed says she does if a 10 mg immediate release in the afternoon doesn’t stop the rebound/crash symptoms

To update on the Elvanse, we actually think it is working better than the Equasym. It's still early days but we do think it is making a difference. Appreciate the supportive thread.

@Fluffyslippersohyes I’m so pleased! That’s really great news!! Is elvanse one of the amphetamine based ones?

Hi I've just read the thread as my daughter is going to start Medikinet tomorrow but I've stupidly read the leaflet!!! There's a huge family history of heart problems in my family but all over the age of 65. The Dr didn't seem concerned, however I've just remembered that my husband's aunt had heart problems and she passed away aged 42, she is his mum's half sister and there are no heart problems with my husband or his mum, would you say it's fine to start her on 10mg?

Hi @Purplepeople12 I am absolutely not medically experienced or trained in any way but remember seeing stuff on this in the NICE guidance.

It looks as though they only do EEG or refer to cardiology where certain factors are present…

”Refer for a cardiology opinion before starting medication for ADHD if any of the following apply:
• history of congenital heart disease or previous cardiac surgery
• history of sudden death in a first-degree relative under 40 years suggesting a cardiac disease
• shortness of breath on exertion compared with peers
• fainting on exertion or in response to fright or noise”

It looks like death from cardiac factors is only relevant where that occurs under 40, which is not the case here. It is also only relevant where it’s a first degree relative. So this is third degree isn’t it? Not your husband, yourself or siblings. Not even your husband’s siblings or parents, but his aunt.

www.nice.org.uk/guidance/ng87/resources/attention-deficit-hyperactivity-disorder-diagnosis-and-management-pdf-1837699732933 page 23

Not even a third degree relative possibly either, as it’s only his mother’s half not full sibling.