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

Great news on your update! Every tiny bit of weight going on helps.

Hope everyone is doing well DS has had a really good run the past month on the one a day 30s. He seems so happy it's been great

<touches all the wood>

This is interesting! Do you have a link? Definitely worth a shot

Glad the weight is creeping up MissH. My son also seems to be eating a bit more at school although his weight is not a problem, I feel so sad when I know he has spent the day with an empty tummy! We may stay at 30 for a while as he seems to be able to focus more though has these heightened episodes in the afternoons. I wonder if a top up of immediate release st lunch time is ever considered?
Love my ADHD, very interested to learn what supplements you are using if you are happy to share, so glad you have found something so successful!

Hi everyone. Came across this thread by accident last night. My DGS (I parent him) has just been diagnosed with ADHD by ADHD 360 and we are starting on Medikinet just as soon as they arrive. He's 7. He may well be ASD too but not going down that route presently as his complicated home life (his mum lives locally and he sees her daily) mean it is difficult to unpick what is what. No indication of ADHD or ASD until he started school. No major behaviour problems at school just lack of focus and concentration plus needing lots of sensory stimulation (think chewing tie), sometimes gets into scrapes at playtime but nothing too serious. School are assessing for dyslexia and it's likely he's mild to moderate for that - spelling and handwriting very poor BUT he's very bright. Despite the dyslexia he is in the top reading band (no clue about phonics, learnt to read by memorising words and context) and his maths is also above average - he pulls it out of the bag in tests but makes lots of careless mistakes in class and of course doesn't do much. Sport is his thing and competes regionally at BMX racing and does very well. This may prove interesting as methyphenidate is a banned substance in the sporting world. I have informed British Cycling and he will need a TUE (whatever that is) to compete as he grows up.
At home he can be very hyper - jumping from chair to chair all evening though not all the time and is very inflexible - everything has to be his way or he can have mega meltdowns, though to be fair, these have gotten much better recently. I probably wouldn't have pursued a diagnosis but school have been dropping hints for a while that he has ADHD and I think they find it exhausting getting him to do anything but are generally quite supportive.
So here we are, about to join you all on this journey!

It’s James Greenblatt well known US psychiatrist but he firsts introduces natural methods (or in parallel with meds)… his Kindle Finally Focused is worth a read

With certain vitamins he’s recommended, although we were 40mg up to December, now we’re down to 30 (and he’s doing brilliantly) after half term we re bringing down to 20mg! I know he ll need the meds no doubt just really hoping for a lower dose

@dogoncouch really hope meds work for him!
good luck

Welcome @dogoncouch - parenting a child with ADHD is exhausting and I am v grateful for Medikanet - which has massively improved his behaviour at school. We also do use melatonin to help him sleep as it used to take us 2 hours to get our DS7 to go to sleep. Now it takes 10 mins!

Welcome dog - have found this thread and the previous experiences of everyone else really helpful

I will look into supplements - I don't think k want to go above 30mg as things are now -he's lost some appetite already and weight and I think for him it would be too much so will definitely look into the meds alongside. We've had the best behaviour run we've had in years - he feels more like his old self from a few years ago before the ADHD really got noticeable and I think part of that is that being diagnosed means people know and it's managed differently and he isn't feeling like a "naughty boy" anymore etc

Thanks for the info @LoveMyADHD. I will try and check it out.

Welcome @dodogoncouch . I'm so glad of this thread too!

Ps. My frowny face on my last post should have been a smiler! Silly phone!!!!

Two questions!
Who prescribes the melatonin - GP?
Had anyone tried supplements s

Such as Equazen?

Hi @snowtrees ! My son's consultant from the CDC prescribed melatonin. And I haven't tried supplements for my son although not averse to it, just never looked into it really.

DGS started on 10mg yesterday. He is 7 and a young Y3 (July birthday). I can't actually believe I am saying this but it all went extremely well as follows:

1. he was able to swallow the pill - I didn't have to sprinkle it on nutella!
2. he wasn't that hungry at lunchtime but still managed some pizza and fruit (school meal)
3. his mum (long story for a whole other thread) picked him up from school and she said he was a bit more hyper coming home on the bus but no major come down. He was calm when I picked him up at 6 and ate fine.
4. Took longer than usual to fall asleep and a bit more chatty at bedtime but nothing too disastrous.
5. and this is the good news.....DGS loved the effect it had on his brain he described it as 'making his brain work goodly'. He is naturally a good mathematician (above average as evaluated by ed psych) but in class he works slowly and doesn;t get much done and often makes careless mistakes in calculations. He does well in tests but doesn't really achieve his full potential. Yesterday he finished all the questions including all the challenge questions and got them all right. His teacher apparently took a photocopy of his work she was so impressed! I haven't spoken to his teacher so only taking his word for this, The only negatives was that he had a couple of headaches but the welfare lady gave him calpol. I know it's only 1 day but is it possible that we've hit upon the right dose already?

Great news @dogoncouch
Could well be fine. We saw an instant improvement & DD is happy to take it as she can see her behaviour is better & grades have gone up and up

Great to see instant results! The biggest result I see is in my sons swimming class where he is really focused on the water toys and interacting with the others to a small degree. Rather than leaping around like a whale!!!

Hope January going well for all.

@NurseP great to hear about the improvements you are seeing. Sounds like the swimming is a great example of what the meds are doing.

@snowtrees in this area the same Paed that prescribes the ADHD meds prescribes melatonin. We don’t use it but a friend’s dd takes it and they’ve had incredible results.

@Hels20 good to hear from
you and that melatonin is working so well.

@HauntedPencil my ds is doing so well on 30 mg too. It’s good to hear things are so positive for you too.

@dogoncouch welcome to the thread! Your ds sounds like a lovely character - what a great description “making his brain work goodly”. Just love that! You were wondering if 10 was the right dose. We wondered the same BUT the benefits of 30 have far outstripped the benefits of 10 for us - ds is doing so much better at school. If you haven’t read the medication book yet I really recommend you do as it stresses that a key prescriber mistake is stopping increasing the dose too soon. He says they should be aiming for the best result for that child, not just a result that’s beneficial. In case it helps my ds has no major side effects at all and is very happy on the meds. He’s been eating a little less but this is only an issue because his weight was so low to start with.

Waves to @LoveMyADHD and @danni0509 and anyone else who is still reading!

@dogoncouch @snowtrees in case you are in the market for a bit of reading, the best book on ADHD medication I’ve seen is this one I mentioned somewhere up thread:

I have just been reading a book I got yesterday about the medication - A Parent’s Guide to ADHD Medication. So far it seems excellent. I would REALLY recommend. Wish I had bought it before starting DS on the meds.
^^
It’s very reassuring and factual with lots of percentages

It is by Prof Peter Hill who prescribed at Great Ormond St. I think he says somewhere he had 40 years of experience prescribing ADHD drugs. Very easy to read!

Thanks for the shout out @MissHavershamreturns - we are ok. Our DS 7 has now been diagnosed with long sightedness and a stigmatism and we are working on an EHCP…in an ideal world I would move him to a special school but not sure the LA will agree and I expect he will have to continue to fail for a while before they relent. I feel awful for not picking up on the sight issues before.

there was a semi interesting article in the Daily Fail on an aristocrat’s son being wrongly diagnosed with ASD at 4 and then being correctly diagnosed with ADHD at 5. The comments made me so cross…suggesting that ADHD is just something made up for badly parented children…it was quite shocking reading the comments and seeing how poorly educated some people are…

So now time for an update on our own ADHD journey here.

The school are now saying they can see really significant improvements in how ds is doing. It’s almost a year since he started the medication (13th Feb 2022) and it has transformed him at school. The big gains really kicked in from the dose going up to 30 mg. Can’t tell you the relief for me and dp.

Ds is still very thin, though my win over the last three weeks is that with the new fortified diet ds has put on 1kg. We have a Paed appointment (actually on our year anniversary!) so I’m hoping they won’t say he has to come off the medication as he’s putting weight on, even if he’s still less than 10th centile for weight. On BMI he’s just over the line into ‘healthy’ from the underweight side.

Offering the foods he likes is definitely tempting his appetite. He’s eating more, but what has made the difference is calorie loading what he’s actually eating, so that even when meals are not massive there are a lot of calories in what he’s taking in. Eg yesterday he had steak accompanied by pasta and I packed the pasta with butter and cheese.

We didn’t have many face to face appointments with the private Paed and in between I weighed on our home scales which I now realise we’re not reliable. My learning from all this which I wish I had realised a few months back is:

• If a dc is v thin and stimulant ADHD meds are being considered it’s a good idea to consciously feed them up a bit before starting the drugs.

• Once started prevention is better than cure on weight loss. The nurse at GP surgeries should be willing to do a weight check every few months on their proper scales

• For the same reason, best to consciously calorie pack from the outset for any dc ok the thin side

• Weight loss can be so slow that you don’t see it day to day and even eating slightly less every day (only a bit less so that I never fully noticed it or worried about it) can of course cause weight loss over time, especially if they are at an age where they are growing fast.

Hope all this is helpful to someone else!

@Hels20 I saw that article too. Agree with you. It was also depressing how the article seemed to imply ASD was terrible. Actually there is of course nothing wrong with having ASD and to imply otherwise is so ableist.

Hey @MissHavershamreturns ! good to hear from you!!

on the weight loss subject… would you consider any time off drugs during Easter break or is it an absolute no no!

just thinking when we have him a break during Xmas holidays, he was eating so much! I’ve never seen him eat like this . He put two kilos on in 4 weeks!

@Hels20 please try not to feel bad about missing the sight things. Our dc are so complex and we are not medical specialists. The important thing is that you’ve found out now and it’s great you are there for him.

Sending you lots of positive vibes for the EHCP. I know it can be quite a journey and it’s so wrong that it takes so long and causes families so much stress.

@LoveMyADHD - we give our son days off during holidays when we have patience and he can run around safely - eg a swimming pool/beach holiday where we are in the water with him! We think it is good - because he definitely eats more and I think children over
time hopefully know better how to manage their ADHD so that by the time they are 18 - they know that they need to medicate to take exams and study but can hopefully cope without medicine for other times during the day/week. I know an 18 year old girl who only takes Medikanet now when she is required to really concentrate.