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

Yes, he’ll drink it, but prefers water or apple juice. I’ve got him some protein shakes too, but would just like to get him back eating more veg and regular meals instead of itty bitty snacking.

@OnePlusOneEquals what did the doctor say about this out of interest? Does he eat on his off days ? Could you really up his food then to make up?

The doctor did say a side effect is loss of appetite. I think things have just been a lot worse this week with the last week of school and the excitement of the run up to Christmas. He doesn’t have off days as the couple of times we’ve tried them his behaviour hasn’t been all that great and his emotions were all over the place.
I think I just need to work on it a bit more and encourage him over the holidays to eat with a bit more variety. It’s relatively early days yet as he only started them in October. I just need to find ways of getting him to eat despite his lack of interest in food and help him realise why.

@OnePlusOneEquals we did a short course for parenting kids with adhd and they said it can be easier to go for massive breakfasts and a big meal later in the day once the meds have work off. Is it any easier to get the calories in very early and in the late afternoon/evening?

My ds is still eating reasonably ok but I’ve definitely noticed a reduction in food intake and also that his packed lunch returns with break time bits uneaten.

@Purplepeople12 really pleased to hear you’ve moved to shared care. It’s good to be there isn’t it.

Hopefully the dr will be able to reassure you about blood pressure and heart rate when you see them. We haven’t had this, but it makes sense that it could happen.

Are you happy overall with the improvements with the meds so far?

Dp and I had an update this week on ds’s first term at school on the stabilised dose of 30, as we had ds’s latest major SN review meeting at the school. The school reported that he’s been much better this term. He doesn’t have meltdowns as often and he’s been able to concentrate better and is calling out less in class. There are still plenty of ongoing difficulties and struggles though because the ASD is still there as well. We are just pleased things are getting better for him and are so incredibly glad we went down the medication route.

@MissHavershamreturns he’s just not hungry at any point in the day really. Prefers to snack rather than have a big meal which makes it awkward. I need to work with him more on understanding why he needs to eat more and with more variety.

@NurseP we top up because we were having those come downs as well - ds was getting really distressed and tearful in the afternoons and that stopped with a lunchtime top up.

@OnePlusOneEquals do you have an ADHD nurse if you are now back in the state system? Our nhs consultant told me our ADHD nurse is really good on stuff like this. Just a thought.

With ours her number is listed on the local nhs ADHD page and you can self refer and just call her.

Is that with medikinet XL MissH? I wonder if it will settle?

@MissHavershamreturns we have been state from the start, don’t have a adhd nurse though, just currently under the paediatrician specialist.

@NurseP yes Medikinet XL 8 hour 30, topped up with 10 of immediate release later in the day to prevent the comedown. That has really worked for ds and he doesn’t get the comedowns at all now. If you read back through the start of the thread filtering to just my op posts you can see why we started topping up.

Thanks missH. I was sure you were on the same but juggling too much here this morning to read through properly!!! Vomiting, Christmas, tumble dryer playing up!!

@NurseP that sounds very stressful!! I hope everyone gets well and the tumble dryer problem gets sorted!

Hope everyone had a good Christmas?
I am so glad we decided to stay at 30 over the holidays. My son has loved it! He really engaged with the presents and played with his toys so calmly. I have not seen that level of engagement from him before. I would have felt awful if he was withdrawn and feeling rough over Christmas and it wold have been so much less enjoyable had he have had another week like the increase week where he kept having the sort of surges of heightened behaviour and pushing and jumping on people.
He has also enjoyed the pringles, chocolate coins and selection boxes very much!!!

Such amazing news!!!! Well done!

Really pleased to hear that nurse! I'm glad it went well. We've had a little bit of ups and downs - he's been a bit unwell and subdued and hard to know if it's being under the weather or the meds but a little bit himself and subdued. Think I'll try a few more weeks and see how it goes when school is back. Still on the XL 30

Merry Christmas all

Happy New Year everyone

@NurseP that sounds like a superb result. It’s just amazing when you can see the difference the medication makes, isn’t it!

@HauntedPencil I hope your ds is feeling a bit better now. It’s pretty impossible to assess the impact of an increase here when they are ill so I really sympathise and the last few weeks have been illness heavy for so many dc. I hope you get more positive signs of the results of the meds soon.

So it’s a wrap for 2022 and in Feb we will be one year on from the ADHD dx. Very funny thought!

Very glad we started the medication but our latest news is that ds is clearly being more affected by the appetite suppressant effects of the stimulants than we thought as he’s now much skinnier than he was (he was always pretty slim) and I don’t think being unwell so much this winter with coughs, colds etc has helped there. I weighed him this week as he suddenly looked quite thin and he’s now close to the underweight cut off on NHS BMI, so we’ve been reading up on how to increase calorie intake for kids struggling with appetite.

If anyone has any tips I would be really grateful. We offer lots but he’s not hungry, so it’s probably about timing of food and maximising the calorie content of what he does eat.

Miss H. How about milk shake or other high calories drinks? And make sure everything is full fat and sugar variety.

It rook a while for me to see the difference in my son. I urge people to give it a fair chance.

Happy new year everyone!

We use teen protein mix drinks. Our DD has defo got skinnier on meds. She had little interest in food and now less. When we have time I make a high cal breakfast with pancakes, eggs, bacon etc It's hard as her brother needs to eat less as he's at top of weight range for age. He wants to eat all of it twice over. I make her very high cal packed lunches eg pork pies, cream cheese

@belowfrozen wondering if you are me!! I also have another dc at the very top of the ok weight range so can’t just bump calories into all family meals!

What make are the protein drinks, if you don’t mind me asking?

On interest in food it’s exactly the same with my ds. He never was very food focused and now eating seems to be an effort. His weight was ok in early July, we started the 30 dose in late July/early August and it seems like it’s just been falling off slowly since then, but without to us spotting it.

@NurseP I couldn’t agree more with giving the meds a chance! It’s amazing what they can do even if there’s no immediate cure and the early weeks can be very rocky

@NurseP Thanks for the milk drinks suggestion. I remembered my blender and made a homemade milkshake/smoothie this morning. I did 4 cups whole milk, a small banana, 100g strawberry ice cream and 100g chopped frozen mango I had left from a frozen smoothie box we got a while back. I’m guessing it’s at least 800 calories worth of milkshake. Ds loved it and so far has had 3 glasses which is probably around 400 calories.

We’ve been upping his calories since NYE and I think I can see a difference already. His face looks less pinched and he just asked for a packet of crisps which is the first time he has requested a snack in ages