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

@MissHavershamreturns so NHS basically forcing for more breaks? Are they forcing for totally off the pill when not at school ?

I know it’s tough , not easy , also requires us to be soooooo patient but not easy is it?

are you giving any vitamins at all? Magnesium by default does relax quite a bit ; omega 3? any vitamin D at all? For him to grow and utilise calcium from all dairy he’s eating he does need vitamin D

Hi @LoveMyADHD it sounds like you’ve done a lot of dietary research and glad to hear it is is helping! We don’t use supplements as I don’t think ds would be keen to take them.

On breaks I wasn’t left 100% clear exactly what the nhs Paed was saying and I wish I’d gone back and clarified with him. One of those things you realise after you leave the room! He said they recommend breaks but won’t require any particular pattern. That was obviously good! But the impression I got was he thinks the ideal really is to be off meds all of every holiday with the exception of the odd day here and there.

I crush the magnesium pills into powder and blend into yogurt to give to DS. He didn't like the flavour of the pills (lemon), but is ok when mixed in strawberry yogurt. Having it after dinner.

Might be coincidence, but I kind think it did help him with sleep. Mood and appetite have improved too, but that might be because of something else.

Worth a try...

@Return2thebasic that’s great, which brand did you take? x

You can always run a blood test on him to check his vitamin d , b12 levels etc

especially if he’s not putting on weight, nhs will run one for you ; have a look at what he’s deficient on and perhaps take it from there x

@LoveMyADHD I just used "Health 4 All", as it's the most common brand made for kids.

I'm still not entirely sure to add Vitamin B6 and others. But with magnesium, I know it's relatively safe and less chance of overdose.

Hi there,

My ds started on medikinet xl about a year ago and we too have been very pleased with the result. He is 10 and a half and takes 25mg XL every morning and it seems to last through school. He would struggle to do homework after school though.

The interesting point is that his paed is totally against breaks in treatment. Not sure if he would suggest a break if ds's weight declined.

Wish I'd seen your posts a year ago, we were very apprehensive about medicating!

All the best to everyone. Xx

When my son started about 6 months ago I was very grateful for this thread and still am.
Our Dr said they would not recommend a break for my son unless he really dropped his weight. Luckily he hasn't and is still very 'sturdy' 😄 !

@NurseP good to hear the thread helped you in the early days and also about the sturdiness.

@someslt123 really interesting to hear about the no breaks advice. Is this a private or nhs Dr? Thanks for your support.

My son has been having the top up for nearly 3 weeks and only minimum difference seen. I do wonder if they will increase to a 10 mg top up. He is still eating OK although definitely less than before and some days more than others. Lunch remains very hit and miss.

I am also considering using a magnesium chew in the evening as its meant to be calming and we are having a lot of night time shenanigans!! 😬😬

Anyone else used these?

I feel a bit down at the moment about appetite issues with the meds I’m sorry to say. Ds has put on around 2kg since the first week of Jan which is really great, but I’ve worked out that to exactly track his red book centile he was on for weight back when he was first given medikinet then he would need to already be about 2kg heavier than he is currently.

He can’t cope at school without meds and was in a very tricky place at dx. He’s still vulnerable now. I’m terrified he will have to be taken off the meds in August which is when our next nhs meds appointment is, if he doesn’t put on more weight by then.

This would be just a few weeks before he starts high school. He’s going to find that move so hard and it doesn’t bear thinking about how much harder it would be if he’s having a med switch or off meds

I’m still trying all I can to feed him a high protein and high calorie diet. He has 500 cals most breakfasts and often has 600 cals. His break time snack doesn’t get eaten as by then he’s appetite suppressed from the medication and his packed lunch isn’t all consumed but he usually manages around 400 cals for lunch. I give him a snack after school (around 100 cals), serve a high protein dinner aiming for 600 cals plus and then try to give around 250 cals for pudding/supper eg a bowl of ice cream or something with cream in it for pudding. This is at least 1800 cals daily and I don’t think I can physically get more into him.

Does anyone have any advice to try anything else? I haven’t had protein shakes suggested and I can’t see any nhs advice to try them for low weight with ADHD. I don’t really understand why they haven’t been mentioned. I’m wondering about seeing a dietician privately.

@Nurse no idea about chews sorry! But will be interested in the answer if anyone else has. Maybe the top up will be more effective at the higher dose if they increase it.

@MissHavershamreturns Just to let you know we re still using the supplements as directed by Greenblatt and one of them (zinc) is renowned for increasing appetite

zinc is also depleted while on meds and actually make Medikinet more effective

would you consider giving it just to check if it helps?

@Return2thebasic Thank you my dear !!

@NurseP I’m sure chews are fine, but prob not ask effective as cream or pill? Would you consider also cream or powder ?

@LoveMyADHD I would consider cream for sure. Not sure how he would do with the powder. Thanks.

@MissHavershamreturns my DS really likes the ProTeen chocolate shake from youthsportnutrition.com he has it as a shake and they also provide some recipes that it can be used in. He’ll eat the breakfast pancakes that have half a banana in with a scoop of the mix. We haven’t tried any other flavours as he is quite fussy and once he’s found something he likes he’s reluctant to switch. But it’s certainly got some calories down him and I’m happy about that.
I do have a refer code which gives you £10 off an order if you’re interested in trying it as admittedly it’s not the cheapest, but they do say they’ll give you your money back if your kid doesn’t like it or will switch a flavour. PM me if you’d like the refer code, don’t want to put it on here as it kinda outs me!
I was worried about him not eating earlier in the year, but this has definitely helped him put on a bit of weight.

Another vote for ProTeens. We mix in blender with whole milk to make a thick milkshake

@MissHavershamreturns , sorry to hear the challenge of putting on weight became unavoidable. It almost like you have to choose between two options that both are vital for surviving school/teen years. Just make you feel awfully powerless.

I do think supplements are worth a try, but it's down to each of us to decide what and how to give it a go.

On a different thought, I'm just thinking if you want to try a different brand other than Medkinet. It sounds ridiculous, as we would think there's no difference between any of these containing methylphenidate which are after all working in the same way. The release proportion might vary but the principal should be the same, hence the general effect should be similar.

But we have had a funny experience with this. Back to a months ago, I started a post talking about DS started titration with all the headache and tummy issue each time when we increased dosage. It was then compounded with mood swings (melt down every day and became withdrawn) when we got to 10mg with Medkinet. It lasted for the whole week, also with suppressed appetite and insomnia. Then we had to switch to a different brand by Day8, due to the shortage of Medkinet. The psychiatrist at the time subtly warned us that this new brand gave some kids some sort of problems than Medkinet (he didn't deliberate what it was) and asked us to watch out.

Then the interesting thing started that the day he switched to this new brand, his temper/mood swings were completely gone, his sleep improve. And when we increased the dosage to 20mg, he only had one day with headache and tummy ache, instead of the usual two miserable days when increasing with Medkinet. I still watch closely to his emotional reaction, but it appears all within normal range. By now, he's on 20mg for the second week, his appetite returned gradually from 4m onwards and he has almost no problems with sleep. (Touch wood!!!)

I'm not saying it's absolutely because we switched the brand. He did start having magnesium a few days before he switched the brand. But the psychiatrist seemed to have taken the note on board and made sure to prescribe this brand instead of Medkinet for this month, even though he couldn't provide an answer as to why there might be different. DH and I gather it's just a fact nobody knows exactly how the medicines are made and the mechanism of release (commercial secret?)

We are yet to see the effect for next level of dosage increase. I'm sure when we increased dosage further (if the psychiatrist and his dad agree to), some side effects would come back and maybe more profound, but as where we stand now, I'm more or less happy with the way things are.

However, everything is a process of trial and error, simply because each person is different Nd react to the med in different ways. There's also the possibility of med effect wanes gradually. But nobody can predict unless you are there.

Keep the options open, as there must be something that can help... Don't give up. Hugs...

Full of grammar mistakes 🙈 You really need to excuse me - ADHD myself, mind jumps way too much when typing, lack of consistency!

Thanks for the support@Return2thebasic @Marchsnowstorms @OnePlusOneEquals @LoveMyADHD

I have read all your helpful ideas and just wanted to say I will come back and post tomorrow.

@MissHavershamreturns , just a thought but you can get very concentrated build up drink to have as a shot of 30 ml or so. Is this something that could help. We use it at work, called fresubin 5 kcal I think. I will try and see if I can find it on line to show you. X

Sorry I do t know the link but the normal build up shakes are 2 cal per ml and this one is 5 so might be worth a try. Think it comes in lemon too.

Thank you @NurseP really appreciate

Happy Mother’s Day to everyone on here. Hope everyone’s days went ok even if slightly different to an average Mother’s Day in a non ADHD household!

A quick post just to say I’m feeling a bit better, probably partly because we all went out for a lovely lunch today. Ds was happy and enjoyed his meal a lot!

I am currently experimenting with dropping the lunchtime top up on Saturday and Sunday (so a partial weekend med holiday). It didn’t seem to have any negative effect whatsoever on Saturday to skip the dose. Today we saw a bit of medication rebound but not too bad (some anxiety and a few tears around 2pm).

But appetite wise the win is that this seems to make a big difference. Both days I’ve managed to get him to take in over 2,000 cals. We are going to do a medication holiday for the first week of the Easter hols as well, so will be aiming to get him to have at least 2,000 cals plus daily then as well. The average I can get him to take in usually on the meds is about 1,800 a day.

I’m going to try some of those build up drinks as well that @NurseP and @Return2thebasic recommended. The plan is to give those just before teeth brushed at bed time.

My new plan is that if I see at least half a kilo weight gain in the next three weeks I will stick with the current plan as I will know it is working. If no more weight gain seen in three weeks from now then I’m going to try to explore seeing a private paed and a dietician for a second opinion on meds, appetite and diet.

We can’t wait until August to sort this a week before he starts High School!

Sorry it was @Marchsnowstorms amd @OnePlusOneEquals who also recommended the drinks! Thank you both so much.

@Return2thebasic thanks very much for the info on changing brand. If no improvement in three weeks I’m definitely going to ask about that.