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Original poster

Starting Medikinet - any experts around?

1000 replies

MissHavershamreturns · 29/01/2022 08:18

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

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Original poster
MissHavershamReturns · 08/10/2022 20:39

@HauntedPencil that sounds like a really good result for day 1 tbh

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Original poster
MissHavershamReturns · 09/10/2022 10:37

@HauntedPencil good luck for day 2! Let us know how it goes - hopefully nice and uneventful like yesterday

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Original poster
MissHavershamReturns · 09/10/2022 10:38

I should have said mine was age 10 when we started.

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Original poster
MissHavershamReturns · 11/10/2022 07:11

How are things at school on the medication @HauntedPencil

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HauntedPencil · 11/10/2022 07:39

Hi thanks for asking - his teacher said they saw a good improvement in him but after school he did have a crash - he got hyper on the way home then was upset and was crying, I kept him home from his hobby. He did perk up later on but it was a bit upsetting at the time

Original poster
MissHavershamReturns · 12/10/2022 19:51

It’s really scary when you see the crashes because they can be intense. My son really struggled with them in the first week. Just out of interest, for my ds we know they were temporary as when we have forgotten his top up once or twice more recently he hadn’t had one.

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HauntedPencil · 13/10/2022 11:53

Ah that's really good to know - the days since have been better he is slightly manic and very talkative like it's been building up in the day and has to get out but not moody/upset and school have reported that he's been loads better but it seems to give him an hour morning and evening

HauntedPencil · 14/10/2022 11:56

We are going up to 20 a day from tomorrow

10 in the morning and 10 at lunch

Original poster
MissHavershamReturns · 14/10/2022 14:16

@HauntedPencil how great to hear that the medication really seems to be working! Let us know how it goes on 20 when you go up to that dose.

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Original poster
MissHavershamReturns · 16/10/2022 14:23

How are things @HauntedPencil?

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HauntedPencil · 17/10/2022 19:12

Thanks for asking - we put it up on Saturday - he's seemed a bit spaced out at times but there wasn't such a noticeable crash. He's been to all his hobbies over the weekend and he seems a lot better this eve than he did last Monday! I haven't seen his teacher yet but I need to check how school went.. i think that's the big area his symptoms are at the peak.

What dosage are you on Miss H, is that stable now? I have a feeling we might be going up a fair bit from here but will see

Original poster
MissHavershamReturns · 17/10/2022 20:17

@HauntedPencil that all sounds super! Does sound like so far you haven’t had any major issues with side effects, which is great. It’s always so good to see the positive effects kicking in as well.

We are stable at 30 first thing and 10 top up, which his consultant said is considered as a 40 dose. No more increases until early next year for us when we have a private medicine review.

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HauntedPencil · 17/10/2022 20:44

I'm speaking to her again on Friday so I'll see how he gets on through the week - what time does he get the top up? We are giving another 10 at lunch but it's a bit of a pain with school etc - he's on 20 and I get the feeling she thinks he'll be on a fair bit bigger in time

Hels20 · 17/10/2022 20:48

I wish someone on here would tell me it would all be ok. My DS who is 7 struggles so hard with friendships. His class tolerate him but he doesn’t really have any friends. He was playing in park after school with others and got over excited and threw one of his shoes down the slide and unfortunately it hit a girl in her face…no real damage but I was mortified.

We have switched to Concerta and haven’t had feedback from school yet…so frustrating. And my son gets really teary about taking it. And then when he doesn’t take it, I feel an awful mother as I can’t deal with his noise and the strange noises he makes.

He is such a kind boy but so impulsive and totally friendless and it makes me weep…

Original poster
MissHavershamReturns · 17/10/2022 21:38

@Hels20 your post made me want to send you an unmn hug. I completely understand these feelings. when not medicated (early morning/evening) my ds is also noisy and it drives me mad even though I love him to bits.

Are you on a final dose of concerta now or still doing titration? I wonder of there might be better results to come on a higher dose down the line?

Your ds sounds really lovely and I’ve watched so many social occasions like this with my ds as well. Mine has ultimately made friends with other ND children. He has no NT friends. Is there any local group you could join on Facebook etc to try to help him find his tribe?

Sending you Flowers as I know it can be so hard.

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Original poster
MissHavershamReturns · 17/10/2022 21:39

@HauntedPencil our top up is also lunchtime and also not easy to organise

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HauntedPencil · 17/10/2022 21:46

I'm so sorry I know it's really hard. My DS has had just so many similar things - lashing out, injuring accidentally not getting asked to parties etc. Hes 10 now and things have improved. When my DS was 7 it was at the absolute hardest and this wasn't on our radar then, he does fall out with children a lot because he's so easily annoyed but he's managed to make a couple of friends and their parents have been really good now they know.

Hels20 · 18/10/2022 08:04

Thank you both and thank you @HauntedPencil for giving me some hope. He is so immature and I don’t think people dislike him but can only tolerate him for short periods.

I am also really tired of school not giving me feedback on meds. Is the Concerta working? Simple yes or no or partly would suffice. V frustrating.

HauntedPencil · 18/10/2022 08:23

I've read that they can be around 3 years more "immature" in some ways and that rings true for us, it really kicked in when all the other kids calmed down a bit and wanted to get their work done in school and he's bouncing around being silly and stuff like that. A lot of kids he hung out with just didn't want to hang around with him any more and then that makes him act worse in a way. He has a close group of about 3/4 friends now and things are getting a little easier.

Also the noises for us, it's hard some days when your trying to just think and orgianse something and they are bZzzzzz bzzzzzzz and bouncing around the walls - bless them but it does drive you mad some days 😬

Lizamac · 22/10/2022 21:34

3rd week of medikinet xl 20mg every morning for
my 9 - almost 10 year old. First 3 days he was on 10 then we went to 20. He had a few headaches but that settled quickly. He has just before breakfast and he is much more compliant in the morning going to school. He says he can focus and concentrate more. He eats his lunch and is ravenous when they start to wear off just before dinner - he said his brain is hotting up again. We have had the best term of school so far and a change to middle school too. We left home last night for first part of our journey north. He was absolute wired n our premier and never went to sleep until midnight and up 6.30. Gave him his 20
mg at 8 and we had a good day in Lake District high nets mini golf walking park etc he had fish n chips for lunch then chicken and chips for dinner. Got to our premier at 6 and I gave him a shower and decided to give him 5mg optional top up which till now i haven’t given him. It settled him him
right down as he was working up to
a riot again. He said mum that tablet is the same as my morning one as I feel really calm and by brain is not so crazy. He is now asleep. Not planning on doing this all the time but certainly for little trips it might be a game changer. I thought it would affect his sleep but doesn’t seem to be. At home he is usually in bed by 8.30/9 and sleeps till 7. Sorry for long post but just wondered if anyone else topped up and how you find it. I was so excited to find this thread as I have been on eggs shells since starting meds

Original poster
MissHavershamReturns · 23/10/2022 02:14

@Lizamac it sounds like it’s going so well! What an amazing result and brilliant that it’s working at school too. Sounds like he’s really excited about his break as well. Hope you all have an amazing holiday.

I can totally relate about what you say about being on eggshells! It’s such a big decision to give your dc a medication like this and we were very doubtful. As you can see from my posts at the start of the thread I was pretty edgy when my ds started it myself!!

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Original poster
MissHavershamReturns · 23/10/2022 02:20

@Lizamac you asked about topping up. We do a top up of 10 mg every day at lunchtime (ds main dose is currently set at 30).

We worried so much about sleep, especially with topping up, as this has been a major issue for ds in the past. We find that ds’s sleep has actually been improved by the medication because he’s less anxious during the day and so can sleep better at night. His sleep patterns have changed since medication and he’s going to sleep slightly later but also getting up slightly later as well.

Good luck for the next few weeks on the medication and do keep posting if you would like to - I find it so reassuring personally to exchange experiences with others who have dc on medikinet and other ADHD medications.

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Original poster
MissHavershamReturns · 23/10/2022 02:23

@HauntedPencil how are things now for all of you? I hope your ds has had a good week on the new dose. Did the consultant decide to move him up again on Friday?

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Original poster
MissHavershamReturns · 23/10/2022 02:25

@Hels20 I hope you had a good half term if it was last week or that you will have a good one this week if you still have half term to come.

How have things been this week?

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HauntedPencil · 26/10/2022 17:36

Hi all

Bit up and down this week, school have been forgetting to give his meds - pead didn't call as promised for the review and we almost ran out - very frustrating

20 a day seemed in the right ballpark with ups and downs so we are moving to one a day to try and alleviate the lunch time issue.

I think we'll be ok a similar regime to you then lizmac - I haven't topped up yet but I've requested some more 5mg tablets to start t on try this for some of his hobbies.

He's been fine generally, he got a bit buzzy towards the end of last week as I tbjnk school hadn't been giving the 10mg at lunch but he's been on the 20mg since and all good. Himself still, just slightly less extra. Will see how the daily dose goes for a month now

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