Please tell me your experiences on medication for ADHD

[Rollergirl11]

Posting here for traffic mainly...

DS (12) was diagnosed with ADHD back in Feb. Medication was discussed but we were still trying to take everything in. Then lockdown/home-schooling happened and DH and I saw first hand just how much he struggles to concentrate and maintain focus. We are now seriously considering medication. I am just a bit worried about the possible loss of appetite as DS is already pretty underweight and cannot afford to lose any more.

Oops posted too soon!

So we would be trying him on Methylphenidate. What are the different brands and do some work better than others?

My DS11 started equasym at the start of July. It made a noticeable different to his concentration and ability to hold a train of thought long enough to form full sentences and actually hold conversations. I was concerned too about the loss of appetite and while it did make him feel ill initially, that settled after a couple of weeks and he knows he has to make an effort to eat even when he isn’t feeling like it. That’s the only one he’s tried so far so I can’t advise on any others.

DS is 25, he’s just started on the Methylphenidate, he said it was like his ‘brain had been given glasses’. However, at the moment he can feel a bit flat in the evening, this will apparently improve though.

DS went onto slow-release methylphenidate (the generic version of Concerta) a couple of years ago.

Yesterday he forgot to take it and after 10 minutes with him I could tell. It makes a massive difference.

It did affect his appetite initially but within a few months that passed. He’s 15 and is over 6’ and is built like a greyhound - all muscle.

His main side effect is struggling to fall asleep.

We are seeing his doc tomorrow to see what other meds they have in case there is anything more effective - he still struggles with a lot of ADD related issues.

I dread to think how his life would be without meds. Such a struggle.

We have tried all the different types of medication out there with the exception of strattera. Currently we have a mix of stimulant and non stimulant medication which has worked for about 12 months consistently. We do still have sleeping issues but they are much reduced compared to previous years. As I say am happy to chat.

We started on the quick release one that only 'works' for four hours, then break for lunch and another in the afternoon. I think he can take up to three a day, but rarely goes over two.

Following! My son has ADHD and I am newly diagnosed and looking into medication.

My nearly 9 year old is on meds for adhd. It's been a game changer for him. He's on slow release with a top up booster that he gets later in the day. You can see when his meds wear off.

Because he's meditated, he now has friends in and outside school, can concentrate in school, he is just loving life in a less chaotic way. Friends want to come to the house, no schoolwork comes home, he's able to express his feelings a lot better, is less impulsive. It's just lovely to see him so settled and feeling fine in himself.

No effects on appetite and goes to bed 30 minutes later than before.

Thanks for all the responses. It’s helpful to see how different brands/dosages work for different people.

So DS started on 10mg if Medikinet XL last Thursday for 5 days. We upped it to 20mg yesterday for a further 5 days and then he’ll go on to 30mg after that. He already has a loss of appetite. He’s eating breakfast but then not eating anything for the rest of the day until his evening meal. I am quite concerned. This happened right from the first day. Should this settle down? No other side effects yet, no affect on his sleep. However there doesn’t appear to be any noticeable impact on his concentration yet either. Perhaps he has been slightly more compliant and less likely to kick off about doing his homework. But then maybe I’m just seeing things that aren’t there!

He is on the slow release 8 hour dosage so it wears off by around 4pm in order for him to be able to eat. I also have some 5mg tablets to give in the afternoon if we so desire but I haven’t done that yet.

What is the difference between Medikinet and Concerta?

DS has medikinet too, it’s been amazing as far as behaviour at school is concerned. We give him a massive breakfast then only out bits in his pack up he will be willing to eat (biscuits and raisins essentially! We would rather he ate anything rather than nothing), then at 5:30 he eats his usual cooked dinner as meds have worn off by then. We also allow him to graze throughout the evening. His weight initially went down, but we seem to be on top of it now.

He also takes a melatonin tablet to help him nod off to sleep.

Both medications have been fantastic for him.

Do you mind me asking what dose your children are taking? Should we start to see more of a difference when he goes on to a higher dose?

DD1 went on Ritalin at 6 and later Concerta . She was bright but they couldn't keep her still or focused long enough to teach her anything..
Stayed on until she was 14 and decided to try without. Went back on it at 17 when she was struggling, and now as an adult remains on it.

She was always thin, and stayed thin, but has other issues with food which didn't help.. however she made it to University, Med school and is now a doctor. I have no doubt that without the medication, none of that would have happened!
She remains ADHD to the core.. but having a lightning fast, million thoughts a minute, mind can be quite useful as a doctor!

DS started with Medikinet and it was horrific for him. Seemed fine at first but he was wild in the evenings (I'm talking a three hour meltdown where he looked dead behind the eyes) and started to get suicidal.

Stoped that immediately, at which point the paed disclosed that Medikinet is only successful in 70% of cases, but they try that first 'coz cheaper we have since moved to Elvanse which has been a blessing. Still have some issues and we're far from perfect but I think DS would be in a PRU by now without them.

Appetite wise, he doesn't eat in the day but then doesn't stop eating from 5pm til bedtimes and I allow him unrestricted access to whatever food he wants during those hours.

Sleep - he really struggled and we tried EVERYTHING. Were referred to sleep clinic 7 months ago and no progress. I gave up and bought melatonin online which has resolved things.

@penpotted that’s interesting to know ref the Medikinet. Our paed has said she wants to start him on this one initially as it’s an 8 hour dose because of concerns around DS’ weight, he’s between 2nd and 9th percentile so she didn’t want him on a 12 hour slow release. I know that she has prescribed Concerta (the one and only med he has tried) to the son of someone else I know so I wonder what the difference is.

Really struggling here tonight after a epic 3 hour meltdown. Does any of the medication help with demand avoidance? (yes I know strictly not an ADHD trait) or impulsiveness.

@Rollergirl11

My son is on mediknet as his top up dose.

He's on 36mg xaggitin XL slow release at breakfast and 10mg mediknet quick release at 4pm

He's only given the mediknet if a friend is coming over/he's going to a friends or a class, other than that we don't give him the 4pm dose.

Meds do help with impulsiveness, I'm afraid I don't know much about demand avoidance to answer that one.

My husband and 12y/o daughter are both ADHD. Both on Elvanse.

Methylphenidate did nothing for either of them. For my daughter it just gave her godawful comedowns in the evening without any benefit in the day.

Lisdexamphetamine (Elvanse) worked from the first dose and continues to do so 2 years later. She takes it first thing in the AM and you can literally see it starting to act 20 minutes later. She visibly relaxes and gains processing capability.

It helps massively with the demand avoidance, because for my daughter it's the ADHD emotional dysregulation that makes her so demand avoidant.

Eating: yeah, its an issue. My daughter is 147 cm and 35kg, so lower end of normal BMI. She loooks skinny, but she's an athlete, so it's hard muscle skinniness. Her 6-pack is amazing! She doesn't want to eat at any time other than breakfast, but we've worked out ways of ensuring tha she does. She knows she has to eat like an athlete to build the muscle she needs for her sports. We do smoothies, flapjacks with seeds etc added, nuts (not at school!), protein bars and balls, and lots of milkshakes. Just letting her not eat isn't an option. High calorie snacky options like cheese and olives always go down well. Easy to eat is key. Steep learning curve on the food front!

Overall, medication has ben an absolute lifesaver. It baffles me why medication for ADHD is so stigmatised. ADHD brains can't be forced into working like neurotypical brains by a bit of willpower. Medication has levelled the playing field for my daughter. It's also been life-changing for my husband who masked his ADHD for 45 years. In the last 2 years his career has truly taken off and he's had 2 huge promotions (and pay rises), becasue he can finally focus his abilties.

I have two with Adhd and they both have demand avoidance traits too. Meds definitely help with impulsiveness, don't help as much with demand avoidance but I am noticing a gradual improvement and downward spirals are easier to get out of. My boys are older though, late diagnosis, and can definitely handle more of life on meds.

Can anybody advise where to start to get help. Tonight has been absolutely horrendous, we can't go on like this. No official diagnosis yet despite being "known" to paeds for 8 years.

So DS has been on a slightly higher dose of Medikinet the last 3 days and he’s had a meltdown about doing his homework each night. Tonight he worked himself up in to such a state that he hit himself in the face. Having meltdowns about doing homework aren’t unusual for DS but we wouldn’t usually have them 3 nights in a row like this and he doesn’t usually get so enraged that he wants to hurt himself. So is the meds? My head is saying yes. He is due to go to the next dose on Sunday and I don’t know if we should or not. Could this be just be teething issues that will settle or does this mean that Medikinet is not suited to him?

@callmeearly are you on an NHS waiting list? Could you go private for a diagnosis? That is what we have done with DS.

@callmeearly

Can anybody advise where to start to get help. Tonight has been absolutely horrendous, we can't go on like this. No official diagnosis yet despite being "known" to paeds for 8 years.

Go private. That's what we did. Yes it was expensive, but we were at breaking point.

We got a referral from the GP, and saw the psych privately. It was about £350 for consultation up to diagnosis. Then £150 per session with her while we worked on getting the meds right. It took a while as the first lot of meds didn't work for my daughter.

The meds were on private prescriptions to begin with, so around £90 per prescription.

Once she was settled on her meds the psych managed to get us on to a shared care thing, so her regular meds are free on NHS prescriptions, but we still pay for a private consultations with her when needed. When meds are tweaked (eg in lockdown her dose had to be upped and melatonin added for sleep) then those prescriptions were private for the first lot and then went onto NHS once the psych was happy with them.

It's not ideal, and we shouldn't HAVE to pay, but it was either that or total family breakdown,. so...

In view of the side effects I would get advice from your prescriber before upping the dose.

Our situation is pretty much exactly the same as @DisgruntledSnowman except we are right at the beginning of him taking meds so very early days. How long did it take you disgruntled if you don’t mind me asking? And what were the first lot of meds that didn’t work?