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

My DS has a real issue with the fight or flight response to things. I haven't heard of the retained reflexes js this worth reading about?

@HauntedPencil yes I think so.

As a starting point, go and spend 30 minutes watching "attention please!" on Amazon prime. Happy to chat over PM too if you'd like.

My DS has always had sensory issues and poor gross motor skills. We found out about retained reflexes via the Educational Pyschologist who saw our DS and the OT we initially saw

That's really interesting I have that so I'll watch it soon. I need to work out how to get into my PMs Cos I'm on the app but I've forgotten my passwords - typically what happens with us is that something will set him off - eg a play fight that goes to far being hit with a ball etc which triggers it all off. He then gets really agitated for a while crying and struggling to breath and and trying to get away which of course he can't at school They've told him where he can go to calm down but he can't think in the moment - his consultant said these things lessen with maturity too and that's another issue isn't it with them taking a bit longer than others to nature in some areas. I'd really like to help him manage these indigents a lot better as afterwards he's in a terrible mess crying really down etc as he hates being like that.

That is exactly my DS. Exactly.

We had to (still do to an extent) work v hard to keep him level as otherwise he would fly off the handle. He was sometimes a bit aggressive at school but usually he would just shout and run off or hide. Similar to yours, he couldn't and doesn't recognise when he's getting close to that point. But honestly, now he does. Or sometimes at least! School have worked hard with him on what's called "the zones of regulation" and it has also really helped.

Like you said, could be maturity. Ours is definitely more like a young 7 year old rather than an 8.5 year old.

Sorry to hear all this it sound incredibly stressful for you all and hope the meds help. I've a few friends with lockdown at that older age and it was also incredibly hard on them. One didn't make it back to school at all

@HauntedPencil I think each school year has had their difficulties, none are unscathed really. My friend is a primary school teacher and she’s got a class that didn’t even get to start reception during covid, the difficulties her pupils have and the lack of resources/assistants in primary schools are making god knows what problems for the future. I don’t think any of us realised at the time just how affected all these children would be a year or two (and more) down the line.
But I’m sure, in time, things will work out. It just takes patience, understanding and just being there for them.
I’m just looking forward to waking up on Friday 25th August and knowing that she’s done well and we’ve survived the exams of all three and the results 🤣

Update on increasing DS dose from 10 to 20mg:
We gave the first higher dose on Friday. That night he was awake until 1am ...! So Saturday (yesterday) we decided to go back to 10mg temporarily. He felt pretty sick yesterday and was obviously exhausted. Slept fine though.
Today gave him 15mg (by means of cutting a pill open and giving half of the contents!). Again he's gone to sleep fine... phew!
So I think we'll try another few days of 15mg before going back up to 20mg. Bit of a DIY approach but it does seem that the sudden jump in dose doesn't agree with him so we thought we'd try easing it in gently.

@rhubarb84 that's a great idea, splitting the pill in half.

Is the sickness totally new? Did he ever have any side effects when he was on 10mg?

Regarding sleep, do you have melatonin? I would really recommend it. I know that it's been valuable for my DS just having an extra 90 mins of sleep a day! Previously he would go up to bed at 7:00, lights out at 8 and be asleep at around 9/9:30. Now we give the melatonin at 7 and he's asleep by 8:15!!! Absolutely brilliant for him (and us as one of us used to sit with him!)

@MissHavershamreturns wow your DS has done so well. You must be really relieved.

I was initially worried that it takes up to about 6 months to titrate up, I guess I was worried we were 6 months away from it improving. How wrong I was! 10mg is probably not going to be our final dose but life on 10mg is infinitely better than life on nothing so I feel I can finally relax knowing we are on the right path.

I had a little cry at the end of this week when DS came home having had a week with absolutely no issues. That's the first time all year.

@rhubarb84 , which type of medicine is he having? I remember some shouldn't have the outer shell be broken due to being part of the mechanism of long release. Just double check. If splitting isn't a problem, then it's probably the best call. 10mg as a jump is fairly big. Glad it helped and hope he adapts quickly before you move up again. Well done!

@WesternEasterner , just by reading the last part of your message made me emotional! What a journey, right? Hard to believe just four months ago, we were at an entirely different position with an almost different child... Really grateful.

@OnePlusOneEquals , unfortunately there's so much we don't understand about neurological interactions/triggers. It feels like a lonely journey to find out that simple answer to "Why?".

Hope your DD eventually could find the right help and could heal completely from the adverse effect of those lockdown periods. (It was so hard and messed up so many people 's lives, especially children as one of the most vulnerable.)

@Return2thebasic I watched that Amazon programme last night whilst doing the ironing and no one else was about. As you do, I tried the walking on the sides of my feet (hands and arms didn’t move) - but I asked my ds2 to try it this morning and his arms went straight into Neanderthal mode. The back reflex test had no effect on him though. I’m going to ask my friend to try it on her non adhd kids and see what happens.
My ds2 hated how walking on the sides of his feet made him feel, he’s now all fidgety and uncomfortable - it’s an interesting perspective on it all

@OnePlusOneEquals , I agree with y. There are some fascinating stuff in it. I genuinely believed it. But I still just can't say for sure if it helped or helped by how much.

I don't regret doing it, despite the money and time (one hour drive each way), as I wanted to find whatever that could help DS. But what I regret was to put all the hope on the therapy and hoped to avoid using medicine. It proved the medicine made the biggest life-changing benefits to him and our family life.

So if you don't mind giving it a try, it might be beneficial. At least you know you have already the most powerful tool (the medicine). Each person is different, it might help your DS more than ours. :)

@OnePlusOneEquals that's what my DS did too when walking on the sides of his feet. It was quite shocking. His mouth also went all wonky and he chewed his tongue.

Luckily for us we have a practitioner in our town and she's not hugely expensive so logistically easy for us.

@Return2thebasic that's really interesting to hear that you went to see Bob himself but can't be sure if it helped. I definitely agree that it wouldn't be wise to pin all your hopes on reflex integration in the hope of the avoiding medication, but I guess long term all these things might add up to improvements? Out of interest, at the end of the year were the reflexes apparently integrated? Could you see physical improvements in the tests even if you weren't sure of the wider improvements? Does that make sense? 🤣

Oh and @OnePlusOneEquals we tried all the same tests on our younger DC. He didn't go remotely neanderthal. I was surprised by how easy he found it. He's very different and is physically very capable.

My friend has just tried it on her son (same age) he went even more Neanderthal than my son and he’s not even remotely neurodiverse - how strange.
In all honesty, the meds work for DS2, hopefully adding in a top up dose will make the evenings more bearable at times. But the reflex perspective is interesting and I’ll look into it further (though will look online for ways to assist rather than pay right now) and see if there is any improvement. Ds2 is still fidgety from earlier this morning doing the experiments 🤣

@OnePlusOneEquals so interesting! I'm a teacher, maybe I'll see if some of the kids in my class can do it and report back!

@WesternEasterner that would be great…..I was contemplating whether asking on his class parents whatsapp page was a step too far 🤣

@WesternEasterner , it's fanscinating as the theory behind it and those tests were really sound to me at that point (still do).

I went for DS's gross motor skill (he used to easily get tripped over while walking at age 5-6), he's impulsiveness (used to roar in the face of other children during pretended play) and he was fidgety and couldn't sit properly on a chair, poor handwriting and etc. By the end of a year, the only thing I can say was improved was his gross motor skills (no more tripping over easily). But that might be down to normal development? He also seemed to be a little braver and dared to try walking on a low wall like other children do.

Apart from these two points, even I want to say there was more, but I can't, iyswim.

When the short film was out, I was really excited thinking we are on the right path to ask for help. But unfortunately, it may not work for all people or at least not to the extent you would wish.

Hi everyone. My son was prescribed equasym xl months ago and so far I’ve had no joy getting him to take it. He wants to take it, but he’s too scared. He’s asked me to hide it in his food but he is so fussy with food that this is difficult.
does anybody have any suggestions?
He doesn’t like jam, honey, chocolate spread, yogurt.

I sprinkle the equasym on a spoonful of calpol!

@Freshstarts22 could he practice swallowing something that he likes without chewing, working up to bigger and bigger pieces? The pill is really tiny so you could start very very small - a piece of cooked rice?

It really helped my DS when I explained that the Equaysm were a really easy shape to swallow and also that swallowing it whole would mean he wouldn't taste it at all. He likes logical and honest!

He puts some water in his mouth, holds it there, puts the pill in (this way he doesn't have it in his mouth dry at all) then drinks from his straw bottle to make it all go down. Works for him. He finds the round Medikinet much more awkward, the Equaysm are no trouble at all.

We practiced with tic tacs but that's no good if he won't eat them.

The calpol idea is a great one - wonder if you could make your own? Basically a thick purple coloured sugar syrup without the paracetamol and just tell him it's calpol?

I use the baby calpol. It's such a small amount of paracetamol. The consultant is happy with this.

He won’t take calpol. Last time he was ill I just had to let it run its course as he wouldn’t take the calpol or the antibiotics he was prescribed.

Had a breakthrough this morning though and he actually took the capsule! Just swallowed it with water. After months of refusal.

Oh @NurseP just to clarify, my suggestion of a fake calpol wasn't intended as a criticism of your practice. I would absolutely do the same if that's what it took and I'm sure the benefits are well worth a tiny bit of calpol daily 🙂

@Freshstarts22 that's brilliant news, well done him!! Hopefully now he's done it once he will feel happier to do it again. You are just over a week behind us - we started last Sunday. What dose did your DS start on?