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

Update from us on our first NHS consultant face to face review.

As I suspected, the consultant was not that happy with ds’s weight. He agreed ds isn’t clinically underweight but said he hasn’t really put enough on over the last year since ds started meds (the year anniversary was yesterday!)

We have to have medication breaks now as the consultant feels this will help him gain weight which makes total sense. We are going to have our first medicine break this half term so I will report back on that. Fingers crossed it won’t make ds too unsettled as he is still pretty emotional on a day to day basis.

The consultant said he will review again in 6 months but if ds doesn’t show a better pattern of weight gain in that time then he will have to change meds. We are going to have height, weight and bp checked in 3 months.

Sorry to hear this @MissHavershamreturns

sadly that’s the reason why we re asked to have breaks ; to make sure we don’t miss growth spurts

it ll be fine hopefully half terms and Easter breaks will sort him out 🙂

Really sorry to hear that too @MissHavershamreturns - I worry about the weight thing a lot. When DS7 is on meds, he really eats v little (but we give him as big a breakfast as he can manage). But we can’t cope without meds unless he is on holiday.

Sorry to hear this @MMissHavershamreturns .
Still no luck with the concerta. I think we will stick with the capsules and consider a top up.

@NurseP I’m sorry to hear that the concerta isn’t going to work. It isn’t as bad as you might think doing the top ups. I hope they work for you.

@Hels20 I know exactly what you mean as the growth is a huge worry. But what can you do when their whole educational future often turns on the meds.

I think with ds he was always a very light eater. His appetite only dropped off a bit on the meds. But at the same time over the last year he’s grown over 3 cm. I think he was probably never eating an ideal amount before meds, he was very low on the centiles, he then grew, needed more cals still and as he’s dropped his intake down a little that meant he was really taking in too few cals.

@LoveMyADHD thanks for the reassurance. That really helps! I’ve got my fingers firmly crossed.

So far the medicine break is going about as badly as I suspected. Ds cried a lot about not being able to use his locker at the pool and this level of upset is pretty rare for him on med days. He’s been very stressed all day. Much more ratty and emotional.

The meds seem to give him the tools to control his emotions better as he has much better impulse control on the meds.

I don’t feel I have any choice but to let him do the breaks as that’s what he needs for his physical health but I think he will find them very hard

@MMissHavershamreturns I am ok with the top up. He is in such a good place with the medikinet so not worried to stay with that.
How long do you have to have the break for? I hope his weight picks up and he continues to do well with the meds.

@MissHavershamreturns

“The meds seem to give him the tools to control his emotions better as he has much better impulse control on the meds”

bang on, that’s the biggest issue when not on meds, he can’t handle anything not going his way

meds break will be hell as you just noticed …. Expect the worse and you ll be fine

Not easy I know … wishing you lots of patience x

I’m interested to hear people’s experience with height. DS has been on Medikinet XL for 3 years. Started on 10mg, lost a bit of appetite but was never a big eater anyway. He could be cajoled into eating main meals and was growing well. Switched to 20mg and this seems a better fit for his behaviour and ability to concentrate and not fidget or be noisy in class and he has a better appetite now but I am worried as he hasn’t grown for a year and he’s 14. He’s a bit sad that it’s noticeable his friends have shot up. We do have breaks in the holidays and at weekends.

Re the chat on emotional outbursts, he used to have a very short fuse with full tantrums and the red mist descended a lot at home and school before he was diagnosed but he very rarely loses his temper now. It could be the medication or it could be maturity and change of school environment also helped.

For his height we actually got Dr Taller and it actually worked but it’s super expensive

overall height is an issue 😏

Is it actually Medikanet that causes height issues or the fact that it is an appetite suppressant?

According to our psychiatrist it’s the fact that appetite is suppressed so growth spurts are missed out

I noticed now that he’s on break , his eating is shocking (this evening bolognese, sausages , hash browns, porridge in less than half hour 😳)

so they want them to be on breaks to make up for lack of eating basically and get height and weight to catch up

We are on a 3 day break at the moment. Ds was very tearful at bedtime tonight and I felt so sad for him. Only two more days to go for now though thank goodness.

I am a bit confused about what to do for the best. I work so I need ds to be able to manage in activity schemes in the school holidays for childcare. There is absolutely no way he could have done that today, if this is going to be typical of how he is on med breaks.

The plan at the moment is for at least a week long med break in the Easter holiday as well. Based on my understanding of the advice we would need to do at least a two week break in the summer holiday as well. I’m thinking these will have to happen when I have time off to be there for him and when he isn’t in activity camps.

I really worry about the growth bit but with no meds her academic side would be in shreds. High school age.
I'm working on high protein & calorie diet plus supplements. Not ideal but I'm stuck otherwise

Thanks lovemyadhd. We use Wellteen Plus supplements (when we remember!) as we were told the Omega oils can really help ADHD. I will compare the ingredients with Dr Taller - maybe it’s worth a try!
I feel for you MissHaversham. Breaks have improved for us as DS has got older. When we were in the thick of peak temper, we were advised by psychiatrist that child meditation every evening would help and we should persevere. We tried calming music and headspace meditation for children but I didn’t have the willpower to stick with it.

I'm really sorry to hear this it must feel like a blow - I really hope that it all settles down

It must be extra hard to watch him having to go through this after the medicine had helped to improve all aspects for so long. It must be a huge blow to his self esteem too, as feeling everything out of control.

Sorry that no wise advice from my part to share (we are still at the early part of the journey), but only the ultimate respect to you and all the SEN parents who have to be the strongest shoulders for their DCs and support them and have beliefs in them in spite of all the emotional rollercoaster that are taken from your part.

Stay strong and keep telling him that we are all humans and any feelings are valid and he's wholeheartedly loved. 💐

@MissHavershamreturns you doing ok my dear? How is DS? x

So grateful for the support on here. Thank you all! The kind messages have really helped me get through this time off the medication. Thank you @LoveMyADHD @HauntedPencil @Hels20 @Return2thebasic @Waythroughwoods @snowtrees @NurseP and anyone else I’ve missed.

His appetite was definitely better during the break and he asked far more often for snacks and ate much more at each meal. This is definitely a win and you can see how med breaks would really help on the important weight and physical health side of things.

If there is any risk of the medication becoming less effective with continuous use then I’m hoping this break will also have helped with that. I think you were told about this risk @LoveMyADHD but it still hasn’t been mentioned to us by either the new consultant or our original one.

Our last med break day was yesterday and ds really struggled through the day. As my dp put it, if we ever had any doubts on whether the ADHD medication was really needed the last few days have reminded us just how hard life is for ds without it.

He has been crying and has had a much much shorter fuse than usual with ds2 and also with things not going his way (losing board games, dying in computer games on PlayStation).

He’s been quite confused by it all and it hasn’t helped his self esteem difficulties at all as it’s not been reassuring for him to think that all his progress at school is (as he feels now) totally dependent on the medication. I have constantly reassured him and explained the med breaks and that this has just been a bit confusing for his body and mind, but for him anxiety and spiralling into catastrophe thoughts are very much part of how his ASD affects him.

I’m really glad he’ll be restarting the meds today. I will report back on how it goes!

I too am so glad of the support here. The consultant rang me yesterday we are foing to try a 5 mg top up at lunch time.
Sorry if this is a silly question, but could yhe meds break be the odd day rather than a week at a time? Maybe one day every other weekend or something? Would that help? Just a thought.
Sorry your son is struggling @MMissHavershamreturns . It must be awful for you all. ❤

@MissHavershamreturns Bear in mind one thing that consultants don’t say freely: Kids create tolerance, this means the brain temporarily is altered so that the dopamine transporters move much faster than normal leaving little dopamine in the main area of the brain

this is temporary and is the result of continuous use of meds; it’s the body’s response to maintain original state

its highly likely your DS is not normally like he was this week; it took us about ten days to get DS to normal state in Xmas

thats another reason they recommend breaks apart from the weight but they re more careful with this information (took my consultant a while to say this, and still he was very careful)

that’s exactly the theory behind rebound ; I found rebound much much better after short release

so rest assured what you experienced this week is not normal for your kid and when you have longer breaks they will ease out

very glad your kid ate better!
sending hugs x

@LoveMyADHD , I found this abstract lately, was wondering the same thing...

www.bnl.gov/newsroom/news.php?a=111541

Long-term treatment of attention deficit/hyperactivity disorder (ADHD) with certain stimulant medications may alter the density of the dopamine transporter, according to research published May 15 in the open access journal PLOS ONE by Gene-Jack Wang and colleagues from Brookhaven National Laboratory and the intramural program at NIH.

What I don't get is that they always represent as most of the kids sort of catch up with the brain maturity at their 20s and eventually stop taking the med. I'm just baffled how is that possible if the brain structure has been altered due to the long term use of med.