ADHD Medication effect waned after the first 2 days

[Return2thebasic]

DS started Madikinet Saturday. Huge change in terms of behaviour. It was almost like the entire person suddenly matured 3 years.

We always say he's like a 6-7 years old with his extremely hyper activities and can't stop cracking silly joke and make constant moves.

But after the med on Saturday and on Sunday, both days he had not big emotions like over-reacting to things. Things he didn't like, e.g. doing English homework or eating food that he usually hates, were taken without much fuss. He did comment, "Oh, I hate this!" but half jokingly. Then he just got on with it. It was SHOCKING for me to see it. Both days too!

He usually plays really physical games with DS2 4yo, like chasing inside the lounge or jumping off the sofa. But both days, he showed no interest in this sort of activities.

He was still making lots of careless mistakes in his work, but he was able to think about what he needed to do as routine (each steps) without having to be reminded and he was able to listen (hear) relatively well.

But by Monday, we could see the effect waning. Tuesday evening, he restarted playing really wild games in the lounge with his brother and had again to be reminded about each step of routine. And today he became as silly as usual and had his meltdown again just because he needed to write a piece of descriptive writing to hand in as homework.

I read each child is different and the body of some may learned to destroy the medical compound, hence the need for increasing doses.

May I ask if any of you have had similar experiences? And how did your experience evolve? Did your child manage to find the right dosage to sustain or not?

@LoveMyADHD , i just fear that nothing would work for him!

@LoveMyADHD I mean working first and then develop tolerance quickly afterwards.

Oh please don’t despair

I think your DS is similar to mine !! Only high dose really worked for DS and he was exactly like yours , absolutely different child! He did develop tolerance and being brutally honest the only thing that helped him on this was the recommendations from a US psychiatrist who treats both with natural supplements and meds ; upon reading his recommendations I’ve given him zinc, magnesium and couple of other vitamins which are needed to support Medikinet and his dose has come down again

dont be disheartened, if it worked once it means the Med is exactly what he needs ! I promise you it ll work

if you can read Finally focused by James Greenblatt (on kindle it’s very cheap), massively recommended

x

@Dontknownow86 , it's a difficult call, as there's no boundary between having tried but still can't and not trying enough when it comes to carelessness. But on the other hand, (you could criticise us), DH strongly opposed telling DS the diagnosis and what it meant. He absolutely would not want DS finding excuses to stop trying. He doesn't want DS use the label to dodge efforts being made.

I feel it's not the right thing and fear he'd resent us one day when he realises what's going on. But on the other hand, with his immaturity and his emotional vulnerability, I also can totally see what DH said would happen if DS knows his brain is different from others and those gaps aren't bridgeable unless being medicated.

So I have hidden the book "I Love My ADHD" with it's cute little dogs until a few years after, when his maturity could process it better.

It's really hard to know what's the right call to make when these are words once out can't be taken back...

I will look up that book. Prof. Peter Hill's book did go through them the supplements one by one. He said there's no valid research results support the argument, but he also said it doesn't necessarily mean they don't help.

How can you avoid the risk of overdosing though? Zinc and iron and vitamins.

@LoveMyADHD thanks for your kind words too!

Sorry not sure who Peter Hill is but the one I mentioned saved us literally! We went within few months all the way to 40mg and early December we were ready to go up to 50mg!! He was fully addicted

we just did some minor tweaks (mainly high protein ,magnesium , vitamin D and zinc does the trick , iron not needed) and the difference is shocking ; for 4 weeks during Xmas holiday he wasn’t medicated at all . After half term we re dropping to even lower 20 mg!

you can’t really overdose , you don’t give high quantities ; dosages recommended is what kids usually take in multivitamins; our doctor knows and he’s totally ok with all these

its really worth reading the book, prob in couple of evenings you ll go through the main points ; if anything it ll massively reassure you x

I would say maybe don't rule out grammar school. If there's a dose that has sustained beneficial effects that could be a game changer.

@LoveMyADHD , may I ask you do you give DC multivitamin chewable which covers all these minerals/vitamins or which form of supplements to give? Mine don't have any supplements except The lo has his vitamin D drop in yogurt.

@Smartstuffed , it's really because that grammar school is really brutal academically throughout. I don't have the heart to make him go through it - he should live a life, not all about grades. He's not that type.

@Dontknownow86 , @AliceinSlumberland ,can you recommend what he can drink with the meal - mainly breakfast for now, as we are having Medkinet XL only.

Nothing fruity at all and he wouldn't want milk in the morning... Pure water would end up probably just a few sip. Sometimes he barely drinks any water in school, so I want him drink a substantial amount in the morning.

@Return2thebasic I don't really know what would be best to be honest, I got diagnosed much later on life after things had fallen apart for the millionth time and I couldn't understand why. I can't even imagine being aware as a child.

Does he not question what the medication is for though? Surely it won't be long til he's old enough to Google it?

I give one by one , not multivitamin as it has other stuff there (like iron) that I really don’t want
even the magnesium is not really a pill, it’s a body lotion , same as my vitamin D

perhaps have a read to see what you’d try out of anything he suggests, and have a chat with your doctor if you re worried ?

high protein is key for meds to work though, we give protein powder with the pill x

@Dontknownow86 , DH told him some medicine to help him focus and concentrate. He doesn't think...very deep. Never had the habit to question things much. Guess one day when he starts being curious, it would mean the med is working.

DH strongly opposed telling DS the diagnosis and what it meant. He absolutely would not want DS finding excuses to stop trying. He doesn't want DS use the label to dodge efforts being made.

My husband was against assessing our daughter for autism for the same reason. It’s a typically male approach IMO. He figured it was best to have her mask and struggle through life than get landed with a “label”. I still went behind his back and scheduled an assessment.

Why? Because I’m still undiagnosed at 42 (being assessed next month) and I know only too well the burden of feeling different from my peers, feeling like a weirdo, wondering why I struggled socially, you name it. I desperately needed her to understand her neurotype, but most importantly, forgive herself for the things she can’t do. Some people would say that’s an “excuse”. I prefer to think of it as an explanation.

When were you diagnosed with ADHD? I’m guessing you were older than your son is now? Was is a relief to know there was an explanation for the difficulties you had?

So my advice is please don’t withhold your son’s diagnosis from him, he is entitled to know.

I think on balance I agree with Jellycats. I knew there was something odd about me from a young age and it did get me down. He'll already know he's not 'normal' on some level and it's already been acknowledged that he struggles to concentrate so much so he has to take medicine, so I'll not sure what the harm would be?

If he's not particularly trying now he's not reasonably likely to try less and there may well be an element of learned helplessness that he might be able to overcome knowing.

You could ask the psychiatrist that diagnosed him for their opinion?

I'm an adult, which probably makes a difference in a lot of ways, but my personal experience was that with the stimulant med which didn't work, it was fairly obviously not working right from the start. The med that does work for me, it went like this:

Starter dose: Day 1, wow I can really feel this, I'm so focussed, I'm so motivated! Day 2, yeah, this seems to be working okay… Day 3, erm, I think it's doing something? Day 4, yeah no this is just normal but with a faster heartbeat.

Next dose up: pretty much the same experience as starter dose, over more or less the same timescale.

Next dose up from that: Day 1 great again, day 2 and all subsequent days, meds working pretty well as intended. Not the Day 1 "Why yes I both can and actively want and choose to clean my house and learn foreign-language vocab simultaneously with no breaks for twelve hours without making any mistakes and with superb information retention" amazingness, but noticeable steady daily effect.

I do take breaks from the meds (though not intentionally)… that probably helps with the longer-term tolerance issue.

From what I can make out I'm fairly typical of adults, but I know children can be very different little beasties to adults when it comes to medicine.

Also, I'd tell him.

Say he had something like IBS that meant he was often having to run off to the loo and was frequently distracted by discomfort and pain, and therefore needed to take medication and make lifestyle adaptations for his own benefit and in order to be able to function on something near a level playing-field with the other kids. You wouldn't let him go on thinking that his difficulties were nothing out of the ordinary and no more than everyone else has to deal with, and possibly ending up coming to the conclusion that he was weird for having trouble with stuff for no good reason, or assuming that other kids are just better at self-control when it comes to loo trips and dealing with GI discomfort.

@Jellycats4life @Dontknownow86 @JarByTheDoor

I found myself indecisive. I do think logically it's the right thing to tell him. To be honest and open but supportive. I also think the benefit of knowing would allow him be aware so as to make adjustments on his side.

But apart from DH being very sure the right thing is to hold it back till later, I can't bring myself to let him feel the powerlessness and grief that I feel. I was diagnosed five years ago. I haven't tried medication yet, but might finally get start this year. Since I confirmed what I suspected, obviously there's a moment of relief that everything in my life finally made sense. But not long after, the overwhelming sadness wrapped me around. The powerlessness, the feeling of being "faulty", the loss of being a normal version of me are just too much to bear sometimes.

I'm still a weirdo - I know other female around me see me as awkward and maybe intense. The attempts I tried to befriend with some nearly always bounce back to hurt me instead. I stopped trying. (I got along with males better, as they are probably a lot less judgemental and don't see me have to conform certain norm as a female. Less disapproval on that basis.)

So I'm not one of those ADHD high achiever and there's very little to make me feel proud and empowered. Hence, I'm absolutely not confident to help DS avoid the same trap. I'd rather defer the time having to deal with it, probably, even though logically I think he shall be told. If this makes sense.

Since I confirmed what I suspected, obviously there's a moment of relief that everything in my life finally made sense. But not long after, the overwhelming sadness wrapped me around. The powerlessness, the feeling of being "faulty", the loss of being a normal version of me are just too much to bear sometimes.

It's not always an easy thing to go through, I agree. I went through a lot of those same complex emotions after being diagnosed with ASD as an adult (the ADHD diagnosis came later, and I don't really have any feelings particularly about it, as I tend to think of my "stuff" as being basically just ASD, some traits of which can be conceptualised as ADHD-like and medicated/managed as such — for me it makes no sense to separate them out in myself, so the ADHD diagnosis had no emotional impact; that all came earlier with the ASD one), plus lots of other feelings/phases/realisations/reconceptualisations, as I'm sure you did too. As you say, it's only been five years for you, so you could think of it as still being pretty early days WRT self-conception after an adult diagnosis of something like ASD or ADHD. I'm at 8 years post-diagnosis (for ASD), and how I feel about it is still changing, though more gradually now.

I think there's a very simplistic online narrative for adult diagnosis, like, "I always struggled and thought I was weird, then I was diagnosed as an adult with ASD/ADHD. I was so relieved to find out I'm not faulty or lazy, I'm just wired differently! Now I'm a proud neurodiversity advocate with lots of strategies and no shame about demanding the adjustments I need. Would you like to see my chewelry?" And it's just… not that simple for all of us. I suspect it's not that simple for those who seem to have unalloyed relief and pride, either, or at least, not all the time

I think that the experiences people have with and after adult diagnosis are probably on average very different to the experiences of those diagnosed as children, so I don't know that your experience (or mine 😂) is going to be very helpful for you in working out for to approach this with your boy… you could look for experiences of people who were diagnosed as children and how they think that being told, or not being told, affected them, but the ADHD landscape — public knowledge, attitudes, resources — is very different these days from even 15 years ago. I guess other parents of kids with ADHD could give their experience of telling/not telling, but many of those won't yet know how it works out long-term, or if the kids are older, it's still an outside perspective even when it's from parents.

That's a lot of waffle to say I've no fucking idea really, but I wanted you to know that though I don't have any kids, let alone kids with ADHD, I somehow seem to feel a lot of sympathy and connection with your situation and dilemma here, and the answer won't be as simple as it's going to end up looking like in something as short as a forum reply.

I hope that you and DH can come to an agreement on the best way forward with your to talk to your DS about his difficulties and how they're managed.

By the way, DS's ADHD is mild/modest. So the impact to his life, as the psychiatrist put it, is about "underperforming". His school teachers/SENCO didn't even think he had it.

*working out how to approach this

I have adhd. I'm on the max dose of medication. Some days I don't feel the meds have worked at all, others are great.

@JarByTheDoor , really appreciate your candid words and sharing of the complexity with diagnosis. It's absolutely not as simple as feeling empowered all along. It might be down to personality.

I was a lot more chilled and just being wandering about on the edge of things that were happening. Never had desire to be the best of all , or being better than others. I did enjoy being myself, regardless how careless and forgetful I was and how my friends shook head saying, "well, this is just so like you". I didn't mind honestly. I remember I was being fearless and all optimistic.

But life is different when you have to be responsible for yourself. I found being disorganised and forgetful unforgivable these day, because that's not how adults are supposed to be. I'm ashamed of my cluttered house and when everyone is affected by any flaw that I have. I just couldn't bear how I am anymore.

Sorry for so much rambling. I didn't intend to write a biography here 🙃. Just trying to reflect what personality really means through maturity and the different attitude towards things/myself.

By reflecting, you are probably right @JarByTheDoor . There might well be a different from being told early as a child and being diagnosed as a fully grown adult. When someone was young, life was all about creating and finding the furthest land that one could reach. As adult, one is more focused on satisfied the needs for the defined role and take care of others. The attitudes in terms of accepting ND condition aren't the same...

Thanks for your much in-depth thoughts and making me realise there IS a difference.

My plan is to see after his exams, maybe by the end of the year, we could start looking into some ADHD therapy. Maybe with sufficient support, he would find more positivity to embrace the condition. And by then, I'd know if meds work. That would be a big factor too...

@JarByTheDoor , I also meant to say, with ADHD alone, life can be frustrating. It must have been much harder for you to have the courage and skill to tackle the challenges that came with ASD +ADHD. I hope you have all the support that you need and wish you all the luck and courage to make a ever better life. It's not easy, but I hope one day when we look back, we'd feel little regret. You have a kind heart. ❤