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

Hello, can anyone here tell me if once you're transferred to NHS from private prescription, if you can then later on still change the Meds your on via the GP?
Thanks

@duvet my understanding of this (but prepared to be told I'm wrong) is that any med reviews will always be handled privately, the gp will only prescribe and monitor.
@MissHavershamReturns MissHavershamReturns it's been a rocky couple of weeks, my daughter stayed on 10mg but has had some monumental meltdowns. She's adamant it's not the tablets, I'm inclined to agree, we've been on holiday somewhere she's never been to before, & she's upset about going into year 10 with all the changes that will bring etc so I think it's a culmination of those things. I have just asked for a CAMHS referral though through the GP as she has never had any help to manage her conditions and in particular her emotions. Unfortunately though I know it could take months to even start. In the meantime I'm looking at private options but with med reviews at £200 a time on top of the cost of the assessments I'm struggling to see how to do it at the moment. Anyway she has a review Saturday so I'll see what she thinks then.

I hope things are still going well for you and your son?

Hi @duvet mu understanding is you start private then once dx you can ask gp to refer you to your nhs adhd service locally. We did this over 6 months ago and are still waiting. Once that referral comes through the whole of your care can be dealt with on the nhs - reviews and increases etc by the adhd clinic, GP doing the prescription.

Or alternatively, once you are on a stable dose, you can stay with private paed for reviews and GP prescribes to save money.

I think this is how it works, but we haven’t experienced it yet! I believe GPS never actually prescribe these meds.

Just looked back at my post and realised it isn’t clear. I meant that the GPS can’t TITRATE the meds!

Ok thank you, I did a re-read there so thanks for clarifying!

Hi @Purplepeople12 I’m sorry to hear it’s been so rocky with the meltdowns. I realised this summer my ds also found the holiday quite scary and my ds also gets really nervous about new school years. I can totally imagine that’s a whole order of magnitude worse with GCSES looming. I believe I have undiagnosed ADHD and exams certainly made me very anxious.

I really hope CAMHS can help her with all this. We have a private fully qualified paediatric counsellor for ds and that “only costs” just under £50 per hour, so it’s not as expensive as the consultants. You could do it every other week to spread the cost a bit

Sorry I meant a bit under £50 per session. The sessions are 45 minutes each i think.

@Purplepeople12 if you don't mind online session, Healios through CAMHS are seeing people much quicker, it was helpful for my dd.

@MissHavershamReturns thank you, that doesn't sound as bad as I was told at all. I'll enquire tomorrow about it

@duvet I think she'd actually prefer online, I'll look it up, thank you

@duvet did you have to do that privately or did CAMHS refer?

No CAMHS referred and the gave the quicker option of Healios.

We had the review and they are going to up her dose to 15mg per day.

I asked about Healios and she said it was a good idea, so I've contacted them. She also said that she really needs an occupational therapist to help her with time management and to give her tools to help her become more independent, along with a sensory assessment so that we can learn what her triggers are, but these are all things no longer offered on the nhs unfortunately. Baby steps but feel we are slowly getting somewhere

@Purplepeople12 im glad you’ve been moved up. We didn’t get much of a difference between 10 and 15 in terms of side effects. Hopefully that will be the same for you too.

Is today your first day of 15 @Purplepeople12? If so how did it go?

@Fluffyslippersohyes how is the Elvanse going?

Hi all - an update from us. We switched from Medikanet 25mg (split 15mg in morning and 10 mg in lunchtime) to Concerta 36mg. This was mainly because of the crash DS7 experienced at about 4.30pm each day and sometimes the crash at lunchtime. He is really struggling with friendships and gets loud and difficult just as the children in class go out to play at lunch.

we saw his psychiatrist when we made the switch who also ruled out autism at this stage.

Anyway - whilst he has been more “level” he hasn’t been able to do the 10 to 15 mins of maths we have been trying to do each morning.

Hi @Hels20 I’m pleased to hear there’s been an improvement in how level he is - my ds says he feels much calmer on the meds. But I’m sorry to hear it hasn’t yet helped him to a point where he can have a go at the maths.

Will you be asking if you can have a try of the amphetimine based ones instead? I seem to remember the meds book saying that some children do better on the methylphenidate based type and some do better on amphetimines. Or is the plan to try titrating up again?

@MissHavershamReturns We are just waiting for the prescription to come through so it will more likely be the end of the week before she starts a higher dose. I am just interested to see how she gets on now we are back from holiday and things are a little more settled, as she has found the holiday hard this year

Has your prescription come through now @Purplepeople12? If you have started giving it to dd I hope your first few days on the new level have gone ok.

We had a med review with ds this week with the consultant. They were pleased with his eating, sleeping etc - decided no real side effects, thank goodness. He’s staying on 30 now until at least Xmas and we are moving to shared care with the GP. We are still waiting for the transfer to NHS ADHD services to come through and the private consultant said in his experience it might not come through until 2023

In case anyone reading this is thinking of doing the private route out of desperation like us, excluding what we’ve spent on the ADHD diagnosis, since Feb I think we’ve spent about £1.2k on consultant medication appointment (first appointment and reviews). Then at least £600 on the meds themselves. With shared care I’m budgeting for the meds to be paid for and say 2 or 3 more reviews before we finally get back in to the NHS system (say £400 to £600).

The diagnosis was about £2k as it included ASD and ADHD assessment, so that’s going to be £4K in total to get diagnosed and medicated and transfer back into the NHS system. I don’t think we had any idea it would be that much when we went into it.

Thanks @MissHavershamReturns for giving that summary of costs. I would put our costs at similar - £1200 initial consultation and then follow ups around £1000 and then meds on top - which are not cheap….

it’s so sad - yet more divide between haves and have nots. No child should have to wait 26 months for a diagnosis that is obvious…

@MissHavershamReturns That's fantastic news, I'm so pleased you've got to that point now, you must feel so relieved? Are your GP'S helpful with this? I understand from my daughter's Dr that some aren't that supportive if you've gone down the private route. Ours have been OK ish, they've carried out the tests that were required prior to starting medication, but were not too forthcoming when it came to sending over our family history of any heart problems, so it remains to be seen whether they'll agree to shared care. I really hope they do!!!

My daughter's meds arrived yesterday, but she's at a sleepover this weekend so I'll be starting the new dose on Monday

It's terrible that any of us have to take this route, but a rough idea of costs is great for anyone just starting out on this journey. Obviously huge positives time wise, we had to wait 2 months for the ADHD assessment, and a further 5 months for the ASD, as opposed to 3 years and 5 years respectively through the NHS.

Our costs so far have been £895 for the ADHD assessment followed by £1950 for the ASD one. We've had 2 med reviews at £195 each and spent £120 so far on meds. We have her next review scheduled for 1st Oct so at that point our costs will have been £3,550 but we've got a way to go yet before we can apply for shared care. That's without any private therapy, we've had acknowledgement of the CAMHS referral but haven't found anywhere yet that can take her privately.

@Hels20 that’s exactly what my dp said when I told him the amounts. He said it’s so totally wrong that there would be kids needing this as much as ours and families would have to wait for two years

@Purplepeople12 I don’t actually know how our GP is going to be but I’m not hugely hopeful that it will be straightforward. That’s because it was quite stressful getting them to even refer us to the nhs adhd service, despite the fact that our consultant has told us he’s the NHS lead in a neighbouring trust. They tried to insist on us getting the school to send a letter even though we have the diagnosis and the school did those scoring scales for adhd as part of that which are referred to in the report. I had to have three phone calls and send an email just to get the referral. I will keep everyone posted!