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

@KnottyAuty it’s great isn’t it. I loved the bit about Ritalin being named after the wife (Rita) of the chemist who discovered it and made it for her.

Hi all, thanks @MissHavershamReturns for a few tags - sorry for going awol. We had a four week wait for an appointment so have been distracting myself.

Anyway, we had the full consultation today. She was diagnosed with ADHD, the QB test score came back quite high I think.

We got a prescription for Equasym XL 10mg. Just going to go with it for now. Hoping it works. She's quite big for her age so we might double it after a week.

How is everyone else?

That sounds like good news that you have the prescription @Fluffyslippersohyes although I know the actual diagnosis can sometimes be quite an emotional moment, even if you want it.

I hope you see a positive result from the meds soon and do keep us all posted on how the first few days go if you would like to.

An update from me. We are still waiting for our review date to come back from the Paediatrician. We have filled in a short review of how things have been at home - we see huge improvements but are still keen to try an increase to see if we can get even more benefits for ds at home. School have another set of ADHD forms to fill in. I think class teacher will say the improvements there aren’t that good yet as he’s still quite hyper in class and struggling to get down to work.

I’m nervous about going up because of side effects, but want to do the best for him. The meds book by Prof Hill does say a prescriber shouldn’t stop at a ‘good’ result with some improvements but should go on to get an optimum result, so trying to be brave!

Does anyone have experience of going from 10 mg to 15 or 20?

What kind of side effects could we expect to see in the short term? I’m really hoping it’s not as disruptive as starting the meds in the first place as the first week was so tricky!

Thanks - so far so good I think. Mornings are good, though I think it wears off by tea time. Homework completion was much better on Sunday morning.

I definitely feel like I can take a breath.

Hello everyone… will return and write in full tomorrow but just to say thank you so much for starting this thread! Day 2 of 10mg Medikinet XL here for 9 year old DS who has been formally diagnosed with ADD for around 18 months. Worried, procrastinated and vascillated around starting the meds but yesterday we bit the bullet! So far, so good apart from a little bit nauseous, bit grumpy and sort over tired seeming tonight but we’re going to hang in there 🙌🏻

Quick question please - what sort of tests did your DCs have before starting titration? We've got the blood tests organised but the GP has been slow to organise the "cardiovascular assessment" so I was thinking of finding out how much it will cost privately so we can try out some meds before school finishes in July.... What type of ECG (if any) did you have?

@KnottyAuty I’m really sorry I didn’t see this. My younger dd has not been well so it’s been crazy here but hopefully she’s on the mend now.

We didn’t have any blood tests and I believe NICE now only recommend ECG if there’s a known risk factor, but I’m not an hcp so not sure.

DS had weight checked, height checked, blood pressure done, pulse, medical history taken, heart listened to with a stethoscope and I believe that was it if I remember correctly.

@Capricornandproud welcome to the club! How are you doing with the medikinet now? Really glad this thread was useful

Thanks @MissHavershamReturns - we have had similar tests in the end. The ECG was mentioned but as you say it's not required by NICE. I'm just very keen to get on with a med trial because term time is slipping away from us and we (DS included) would dearly like to know whether it will help enough to consider staying at his current school... I'm not sure we will have time to find out what works before the summer holiday is apon us...

@KnottyAuty

Ds didn’t have any prior tests, he refused!

He has his weight and height done at a push, but he’s never had his blood pressure / blood tests / ecg done. He wouldn’t tolerate any of it (autism)

Hes on a different adhd medication now (non stimulant) that does require 3-6 monthly blood pressure taken as it can alter bp, but he still won’t have it done. CAMHS are ok with this and still prescribe though.

Thanks @danni0509 he wasn't very happy with the tests but he is hoping that the meds might let him stay at his current school. He actually seemed to enjoy the blood pressure measurement. His sister calls it a "teddy hug" from when she was in hospital so I think that helped! The nurse was really nice and took the pressure in the cuff up really slowly and with his agreement at each step. Just keen to get on with it all now....

Just wanted to add DD didn't have any medical tests before titration. The initial appointment tested her limits so the Dr said he could just deal with us. We weighed and measured her at home and the Dr advised us to buy a blood pressure machine to use at home so we've done that once a week.

Hi @Fluffyslippersohyes we also got asked to buy a home blood bp machine which we do once a month.

In other news we are putting ds up to 20 mg daily to see if we can get bigger gains for him. I’m quite scared about this because I have an ‘if it ain’t broke don’t fix it’ feeling. Currently we’ve seen real improvements particularly with mood with no real side effects.

But hopefully it will be ok - I will keep this thread posted.

Hi @MissHavershamReturns we are starting off with 10mg Equasym so fingers crossed

Have you started yet @KnottyAuty or planning to start this Weekend? Hope it goes well!!

This weekend! Fingers crossed!

@KnottyAuty Keep us posted!

We started our new dose today as it was the start of half term for us. Ds had 15 mg medikinet with breakfast and then 10 mg immediate release with lunch. He was on 10 of each before.

I think he seemed a little flatter and calmer and maybe slightly withdrawn, but it’s hard to tell if that’s new meds-related because he’s tired. The specialist told me 10 to 15 medikinet is actually only a very small jump.

If he tolerates the 15 mg fine then the specialist will go up to 20 mg.

Keep your fingers crossed for us!

Just doing some shout outs as would be great to hear any updates from everyone.

How are things @carriebradshawwithlessshoes ?
@AlwaysFireFighting ?
@Capricornandproud ?
@Fluffyslippersohyes ?

And anyone else still reading these threads, how are you?

So first two days of the higher dose, moving from 10 to 15. Not a big jump. So far no visible side effects or difficulties. DS had no difficulty getting to sleep last night.

DS says he feels more calm than usual and doesn’t feel the need to jump up and point things out excitedly that he normally does. He views this as a good thing. He’s definitely still more hyper than an average child and swung hanging off a strap on a train yesterday

We’ve gone up to 20 mg this morning, as per the advice, as there didn’t seem to be any ill effects from going up to 15. I’m also going to give 20 mg as the midday top up as per the advice.

Bit nervous about this - periodically ds has had sleep issues though not for a year or so, which is one of the reasons I think they weren’t keen to move him to more methylphenidate too quickly.

@KnottyAuty How has the first few days gone for you?

Just asked ds how he now feels on the 20. He says calmer! Which is good and interesting. Fingers crossed for it to help him.