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

So our Medikinet 5mg top ups seem to be lasting about 3 hours, 3.5hrs tops. Is that about right? It honestly feels like we just have it to him!

The Equaysm XL lasts 6-8 hours which is about right and sees us through reliably till about 2/3pm.

When we started it was on the 5mg Medikinet and that was about what we got - they would wear off at lunch

Medkinet top up is a short release format, lasting no more than 4hrs, I think. If you want it last longer, will need to use the XL format.

We’ve had a crazy few weeks so I’ve not been able to post, but catching back up this morning!

Hi @NurseP great to hear about the bouncy castle session! It’s amazing when you see results like this isn’t it - you think back to where you were before and realise the difference! Weight loss came on suddenly here too - no issues for the first 6 months and we think it started and was fast from when we titrated to 30 mg. A high calorie and high protein diet is working for ds - he’s officially put on one kilo using this since Feb and was weighed last week.

@Plro hope all is going a bit better now? We definitely found emotional side effects at first, if you read back through the start of this thread, but those have really settled for ds now. We needed a lunchtime stop up because he was getting really upset mid afternoon as the meds wore off, so it might be worth asking about this if the issue continues and to haven’t already. All the best for the next few weeks!

@WesternEasterner so glad this thread was useful to you and that you are seeing such incredible results already. Stay with us and keep posting! The reading progress you are seeing sounds amazing I have to say. We’ve seen reading progress too and our ds went from a non-reader out of school to reading regularly before bed. Our ds also has asd. I would agree with your comments about continuing to titrate up. We had great results at 10 and 20, but 30 has made the world of difference to ds and we wouldn’t have seen that if we had stopped before! You asked about the top ups - I would say ours lasts 3 hours.

@HauntedPencil we were also told not to supplement by the consultant. Glad to hear you have the melatonin in place and someone I know through work has found it life changing for their child. Is there any obvious trigger for the meltdowns - any change to routine or stress that could account for them at all?

@rhubarb84 how are things now on 20? Hopefully you will see a difference you can really put down to the meds.

@LoveMyADHD hope all well with you - my mother used to make her own yoghurt which was delicious! We do med breaks as you know and they seem to be helping ds on the weight side. My dm has done a health sciences qualification (not an HCP though) and she says that from her reading as a total non expert on ADHD it makes sense to her that at least one break a year would be a good idea to prevent tolerance.

@Return2thebasic, @Marchsnowstorms, @Hels20, @Marchsnowstorms how are all of you doing?

@dogoncouch I meant to add you too! How are things in your family now?

@someslt123 @Waythroughwoods @snowtrees @OnePlusOneEqualswould be great to hear how you are doing now?

Just got to do something with the dc but back shortly with an update from this side!

Thanks for asking. We are doing well at the moment. DGS is actually enjoying school. He did comment the other day that he had lost a dojo (e merit point) for sliding on the carpet at home time. Alarm bells rang that maybe 20mg wasn’t working anymore but it begs the question - are we trying to create perfect children or are we striving for normal children. I’ve been a teacher long enough to know that hometime is a trigger point for many 7 year old boys and is this just fairly typical rather than ADHD behaviour?

I only medicate for school as he spends most weekends either training or racing his bmx. Yesterday we were at a small local race with all of his friends ( most of whom are a bit quirky in some sort of way - it seems to go with the sport). He got obsessed with a pair of second hand goggles he wanted me to buy him and got quite stroppy and demanding about it. I’m quite used to this but it did make me wonder whether his medication could have helped - though then I would have worried he was ‘cheating in his races - methylphenidate is a banned substance without a TUE which I haven’t applied for because he doesn’t take when racing! Any body inthe same situation with sport?

I now have the time to sit down and update. Reintroducing the top up at Easter went fine and we have a plan around med breaks which both dp and I are happy with. So we will do another three day break at the start of the May half term and at least two weeks off in the summer.

Weight is looking a lot better on this side and we’ve managed to get another kg onto ds since his consultant appointment in mid February (around 12 weeks). He’s also grown 3 cm since mid Feb, which surely suggests he’s still growing ok! He’s 11, so in those years where boys apparently should grow approx 6-7 cm a year according to something from the US I found searching around on the internet. He grew 5.5 cm in his first year on meds where he had no breaks, so hopefully not impacted too much.

Generally his life is so much better since meds and I’m so thankful for the medication and that we were able to overcome the huge reluctance both dp and I felt to give him these. Hardly any meltdowns at school these days, handwriting better, this school year he’s finished around one book every fortnight in his own time, whereas he read almost none the previous year.

It’s not a perfect picture here by any means and he’s still very nervous and still has all the struggles with change, social skills and communication that go with his ASD, which will be with him for life, but the medication does help him enormously.

Thank you so much to everyone who has posted here since I started this thread early last year. It’s made the world of difference to me!

@dogoncouch no advice at all on sport as I have no experience but hopefully someone else does. Impressed that he I so good at racing - what a star!

Rather than the 20 losing effectiveness generally it is possible it might just be wearing off in the body by 3pmish! My ds metabolises his quite quickly and it’s always worn off by 1-2pm so we have to top up as that was making him tearful. Our consultant said the 8 hours for medikinet XL is approx but won’t be 8 hours for every child and isn’t for ds.

I also agree with you that some messing about is totally normal! I have a younger child close to this age and lots in his class will do this sort of thing at home time!

@dogoncouch , glad the med works for your DC. And I think you raised a valid question. How much we want the med to alter our DCs behaviour? People say it shouldn't alter their personality. But personality is expressed via the way they react to things and behave in an environment. I found it's not always easy to draw the line.

When we were on 20mg, the teacher's feedback was that she saw lots of improvement, yet it reserved his lively personality. Then I wanted to go up to 30mg, whilst DH was really unsure as he didn't want to him to be "overly medicated".

We went up to 30mg anyway. For the first week or so, DS was almost very quiet, if not too quiet. But it was just after a tiring trip during Easter break and we had to wait to see the true picture. He then seemed completely back to normal. However, this "normal" is not the old version of "normal". It's like a more age appropriate normal. Like how a 10 years child should be with its maturity mixed with some silliness and funny side.

A few days ago, he had a mini meltdown, simply because he didn't know how to solve a maths ratio problem. He had some sobbing moments for about 15 minutes. I knew I couldn't help, but questioned myself "Is this some side effect of the med?" or "actually the med effect is waning?". I had to remind myself, it's not a perfect child I'm after. A 10 years old maybe is allowed for moments of fear, frustration, sadness and a mini meltdown. I have to admit, it's really not easy to decide.

Sorry, went too far and rambled too long. Just to let you know, it's a valid question which is shared by us and maybe a lot more other parents.

About sports and the med, I remember I read somewhere that some parents choose to not medicate during sports events, because it actually could hinder the performance (some sports require fast /burst thinking and some of the positive qualities that ADHD provides). But that's just what I read without experience. (Mine doesn't do competitive sports, even though he enjoys playing as a member in sports.)

@MissHavershamreturns , 3cm in 2-3 months! That's quite a shootup!!! Congratulations 👏 Well done!

Sometimes, I feel when kids want to grow, even if you feed them nothing, they'd still manage to stretch their length regardless 😁

Ours hasn't grown a lot since last year (well before the med), but he's already above the 90 percentile. Lately I noticed his clothes are getting smaller. Overjoyed! Not a lot, but he's growing.

He's eating alright, not as much as before. I just try to feed him more at breakfast and delay his dinner so he could have some appetite. Occasionally he'd eat a decent size of lunch. But often, barely much.

I started giving him calcium and vitamin D supplements. Not sure if it encourage his body to grow..

By the way, our psychiatrist s view is if a child grows in weight and height, his medication might started to become less effective due to the ratio to mass. So an upper dosage might be justified.

DS does a few evening activities and he's chosen not to take a top up for them but he does struggle a bit to concentrate he his now managing to behave ok in them whereas before he was getting into bother all the time at eg cubs.

Interesting to think about the line and not going for the perfect behaviour isn't it, I guess when he used to be silly it would trigger a concern in us it was going to escalate into a bad incident hitting or a meltdown, and now as you say it's usually just age appropriate silliness. I definitely used to be on high alert for everything it's a bit of a change to get used to

This is such an informative and supportive community - so thank you all!
I’ve been a bit preoccupied with unis for other DC who’s sitting A Levels but it’s lovely to hear your updates.
DS is happy with his 20ml Medikinet XL during school week with breaks at weekends and holidays. His focus is so much better at school with it and now as we are approaching GCSE year, there’s no question of stepping back! The Sen dept at his school are great and he’s going to be given some help with how to write a revision plan etc rather than leaving everything to the night before!
Interesting about changes to personality. Haven’t noticed major changes - a bit less boisterous and devil may care. He does worry a bit more about being late for things and fitting in, doesn’t get into as many scrapes! He was often loud, sometimes explosive and always arguing, now he’s calmer and quieter but seems happy.
His weight is fine and has a good appetite though still a worry about his height. He hasn’t grown since May last year. Been taking calcium and vit D supplements for last 2 months.
I’ve read Finally Focused (Greenblatt) which was LoveMyADHD’s recommendation- fascinating and am trying some of the recommendations though we do battle with junk food (he buys with friends at school)!
Will look at ‘Attention Please’ too. Keep the recommendations coming!

My son had a day off meds yesterday and ate like a horse!! It was nearly 10 by the time I realised that daddy had not given it so we had a day off. He didn't have the top up either. His behaviour was OK . We made sure he had lots of time outside which really helps him.

Is a one day break here and there enough of a break to be beneficial?

I read a research paper which did suggest a weekend med break. But they also mentioned if it's not working for those with obvious waning effect of the medicine, longer break might be needed.

Again, each person react to the med different because of the chemistry in their body. So, always keeping an eye and make suitable adjustments seem to be the thumb of rules.

About the retained reflexes therapy (Attention please!), We actually had been with Bob for over a year. I honestly couldn't decide if it really helped (at least it's in our case). Certainly there was no dramatic improvement. Any slow improvements are hard to attribute if because of the therapy or normal development/maturity.

I do wish we started exploring diagnosis and medication a few years earlier though, instead of putting all the hopes on alternative therapies just because of the fear of medication. It would have had made life a lot easier for both DS and us, especially with all the time lost academically and socially.

So if anyone decides to try the therapy, go ahead. But don't let it stop you from getting help from the proven medical paths. After all, it's not yet proven clinically. So the skepticism is always there.

We had no intention of having a med break, but the forgot to pack his tablets for a weekend away! It was interesting that it didn't make as much of a difference as I thought it would. He was a little more loud and silly, but we were with extended family, so a little extra loud and silly is to be expected. He did struggle a little more to concentrate on homework, but we didn't push too hard.

I'm wondering if a little extra medication might be helpful for school. I have been nervous about increasing the dose, but it's worth exploring. He's really good at maths but makes really rookie mistakes which is probably due to his adhd.

Anyway, I really appreciate hearing other people's thoughts about medication. It's wonderful not to feel so alone as we did when we started out on this journey. X

@MissHavershamreturns have been following the thread, just not got round to contributing. Things have gone a bit topsy turvy here recently. To be fair it is a bit of a stressful time (sats, GCSE’s + A levels this year) but DS2 is doing ok during school time, eating more and generally being fine till around 4/5pm when the meds wear off and not all evenings are great (though nowhere near as bad as before meds) he’s just tired/hungry and can struggle to concentrate.
We had a chat with his paediatrician and we’re going to try an evening top up dose to see if that helps - there is no way any homework or such like would get done otherwise. Am currently getting him to do it on the weekend, but with high school looming we need to get evenings on track.
The topsy-turvy bit comes from his sister who has anxiety/depression and is currently under CAMHS and heading for GCSE’s. In order for her to be a bit more settled I’d asked our nhs gp to recommend a private psychiatrist to see about antidepressants to try and help her, previous end of year exams have not gone well. The nhs wait for the next stage of her treatment via a psychiatrist would take us 6+ months, but we/she couldn’t wait that long.
So off to private psy and he diagnoses her as inattentive adhd and says her anxiety/depression is a product of her adhd and Concerta XL is what she needs - in all honesty I’m not convinced, but right now I’ll do anything to help her get through the next two months. She been on the meds for 2 weeks now and she’s still feeling low moods, but is a bit more focused in the mornings, but that tails off in the afternoons. She’s on 2x 18mg right now after a week on 1 x 18mg - not a huge amount if difference according to her, so will get it all written down in advance of her check up app next week.
I’m just not totally convinced that is what is causing her problems, but she has had several blood tests, tried the pill (made things worse) she doesn’t drink, self harm, stay out all hours or party and so forth…..I just wonder how much all of this comes from lockdown and starting puberty. She’s the one asking for help and doesn’t want to feel the way she does….so who knows really.

@Return2thebasic that's interesting bout your experience of retained reflexes. We have been going for a month and I'm almost certain it's made a difference to us so far. Even DH thinks so and he's usually very sceptical. The person we are seeing said he had issues with quite a few (nearly all) of his reflexes. We are currently working on his Moro reflex which was apparently what was causing him to fly off the handle in stressful situations as it becomes flight or fight. He's absolutely better than he was. Could be a coincidence of course.

Now that he's started meds it'll be harder to know what progress is due to meds and what is due to the work we are doing on retained reflexes. We are going to continue as it should at the very least help with his absolutely dire gross motor skills.

I am speaking to DS's teacher in a week to find out how he's getting on at school. I'm excited and that's a new feeling for me. I usually dread talking to school and go with no news is good news.