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ADHD Medication effect waned after the first 2 days

62 replies

Return2thebasic · 01/02/2023 15:05

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?

OP posts:
Shopper727 · 01/02/2023 15:11

So no other behaviours stayed the same?
you started at a weekend then was he at school Monday and Tuesday?
Perhaps it helped at school but wore off by home time? My son was on the same drug started at 10mg then increased to 20mg after 2 weeks. But it did not suit him for various reasons, give it a decent chance, evaluate how he is in other places, school etc what do they think how was he?

it doesn’t completely change them, obs the first few days you’ve seen a huge effect but my sons differences were subtle we would alway remind them to be gentle, quiet and stick to routines, meds or not so don’t stop that. He should be checked regularly whilst starting this drug so speak to your prescriber - ours is an adhd specialist nurse who is really good, he changed us to something new and it’s not as good in terms of behaviour but less side effects for my child

Return2thebasic · 01/02/2023 15:17

@Shopper727 , thanks for the reply.

We just started, so I know it's early days. Today he's home all day, as his class teacher joined the national strike. So I got to see him closely.

Unfortunately, with him, it has to be CONSTANT reminders about anything. He either didn't hear you for whatever you said, or his brain just moved on and got occupied with some other ideas more interesting to him. So unfortunately, those reminders don't work unless it's a told-off at that moment. Any reminder passes 60 seconds, expires with him...

OP posts:
RosieLemonadeAndSugar · 01/02/2023 15:19

My son is 6 and on 10mg at the moment.

He started on 5mg for 30 days and then he was upped to 10mg as of last week.

I kind of feel like the 5mg had more of an effect and made him more chilled.

This week he's been constant 'can you play' going from one activity to another. Constant talking, he literally can't sit still.

I'll give it chance but I think I may mention it at his review ( again in 30 days )

Interested in this thread?

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Shopper727 · 01/02/2023 15:21

Perhaps once they increase the dose it might help but it’s absolutely trial and error give it time report back to your team and they will be supportive and increase dose or change it once he’s had a fair go at it if it’s not shown signs of working. It’s good you’ve had him at home, but it’s also handy to see how it works (if at all in school) it just might not be the correct medication for him for now but they tend to start with it before thinking of other drugs. It’s hard going op

Return2thebasic · 01/02/2023 15:24

@RosieLemonadeAndSugar , yes, that's my fear too. We are on 5mg, but our next meeting is only in a week time. I'm hoping he can increase dose to 10mg. But the fear is there, if his body somehow just learned to destroy the content very quickly. As for now, I'm back to the desperation that I felt last week.

Just CAN'T HEAR you and with all the high-and-low emotions...not mentioning the risky games he's playing with his young brother.

I fear it's not going to be as straightforward as I thought!

OP posts:
Return2thebasic · 01/02/2023 15:26

@Shopper727 , I know patience is essence. But no one knows how long this is going to take and if he's in that majority 90% which something would work though.

OP posts:
RosieLemonadeAndSugar · 01/02/2023 15:29

@Return2thebasic I think it really does take a little bit of trial and error with this kind of medication.

I'd definitely mention it to the Dr when you have your review and see what he suggests.

It's hard isn't it.

I feel constantly exhausted.

Return2thebasic · 01/02/2023 15:29

Oh, there was no fidgeting or constant talking too on the weekend. He was just really chilled with a very pleasantly light heart... For two days, I almost thought we could have finally have mature child who's like his age! (He's 10)

OP posts:
adhdpunchbag · 01/02/2023 17:46

Anything to do with Monday being a school day?

Nevermindthesquirrels · 01/02/2023 17:56

Are you going through titration? This is quite normal. Even at the end when you find the perfect dose, the huge boost in the first week or so doesn't last forever. It doesn't go away but it's definitely less big if that makes sense. A lot of kids take breaks on weekends and half terms, or take lower doses so they don't build up tolerance. It's very important you don't just rely on meds for help. The meds will mellow it out but often kids will need other things on top. Regular outlets they can easily access.
We used that sweet spot to get DD into a swimming club that's helped a lot. The meds aren't as noticeable but they do make a huge difference. I find that helps kids with ADHD a lot. A lot of the other sports just made it worse tbh. The games riled her up.

Return2thebasic · 01/02/2023 18:11

Nevermindthesquirrels · 01/02/2023 17:56

Are you going through titration? This is quite normal. Even at the end when you find the perfect dose, the huge boost in the first week or so doesn't last forever. It doesn't go away but it's definitely less big if that makes sense. A lot of kids take breaks on weekends and half terms, or take lower doses so they don't build up tolerance. It's very important you don't just rely on meds for help. The meds will mellow it out but often kids will need other things on top. Regular outlets they can easily access.
We used that sweet spot to get DD into a swimming club that's helped a lot. The meds aren't as noticeable but they do make a huge difference. I find that helps kids with ADHD a lot. A lot of the other sports just made it worse tbh. The games riled her up.

Yes, we are just starting. So much anxiety (on my side)! My expectation wasn't high at all, but got blown away by the effect of those first two days. Got... overly optimistic. Now I saw the little to none effect after four days, started researching tolerance and got all pessimistic... 😫

Thanks for pointing out what's within the normal range. DH was opposing breaks, but now I think I'd ask the psychiatrist at the meeting.

DS loves sports, but not those with strict rules like football. He's very into swimming, but we stopped since the pandemic. I think I need to sign him up again. He also does scout and loves it.

We are preparing for 11+. So not lots time that we can spare. Once the exams are finished, I'm thinking to have him try CBT which I think would benefit him significantly.

I feel a bit low again this afternoon. The fear of not able to have the med help him pulls me down. He's like a 5-6 years old in maturity and his 4yo brother can do better than him in lots of things. Just can't imagine how he could manage once he starts secondary school.

OP posts:
Nevermindthesquirrels · 01/02/2023 18:36

Best not to compare them even in your head. As they say, thieve of joy etc. If he's just started the titration than I wouldn't give up hope. DD started on 10 and only really felt a difference that lasted longer than a few days once she got to 40, but she is 14.
I would prioritise swimming over 11+ in your situation. DD does CBT and it is really helpful. Esp if maturity is as low as you say, grammars aren't known for their pastoral care. Get the book smart but scattered. Really good suggestions in there that we implemented

Return2thebasic · 01/02/2023 20:13

@Nevermindthesquirrels Thank you for sharing your DC's experience. DS is really tall for his age. So I suspect he needs to go up a lot to make work. Just hope it's not gotten mellowed out too much.

Agree. Grammar is not for ADHD kids. We are close to an excellent one, but we aren't going to even bother to let him sit the exam. We are eyeing on two comprehensive ones, but selective. But based on his rate of carelessness, the chance to get in is not high!!!

Will get the book and find some alternative strategies. The ones like shouting to get attention we've used since he's little became less effective...

OP posts:
Dontknownow86 · 01/02/2023 20:22

It's not a miracle cure and you'll have a couple of good days with each dose till you find a good one. Also make sure he takes it with a good protein source and no citrus for an hour or two.

I would say please don't assume he can't do well or call him careless. Chances are he cares very much but still struggles. Kids with adhd often grow up to have depression and anxiety as we have so many negative comments it becomes internalized so please don't add to this.

AliceinSlumberland · 01/02/2023 20:26

You’ve had lots of good advice, but one thing I just wanted to say was consuming certain food and drink close the tbe dose makes it ineffective, I think vitamin c/citrus/orange juice can have an impact, it might be worth looking at what he has for breakfast in the week and making sure that it’s not having an impact.

Maestro12 · 01/02/2023 20:47

Hi OP - just to say it took I think at least 12 weeks and probably longer to get the right medication and dose for my DS.

Medikinet only had limited impact - I remembered feeling panicked and depressed that mediation wouldn't work for him. We switched to Elvanse and that did make a difference but he is on a relatively high dose of 40mg - he’s only 10 and very slight. Dose doesn’t relate to weight etc.

It was also accompanied by some changes at school so I’d agree medication won’t make the difference on its own but it has made a huge difference to him.

We don’t take at weekends or holidays as it has a big impact on his appetite.

Return2thebasic · 01/02/2023 20:47

@Dontknownow86 , @AliceinSlumberland , thanks for the tips about citrus drink. He does have a cup of diluted apple juice with his breakfast. I will check the box if it has added citrus ingredients. Thank you!

@Dontknownow86 , I know what you mean. Honestly it's really hard on this one. I myself have ADHD all my life and really really struggled with carelessness in my school years. But I always sort of believed that it's because I didn't care enough and I didn't give my 100% effort. But saying that doesn't mean I really knew "how to make more effort". I guess the brain just didn't allow any possibility for that bit of extra "effort". I will need to find a better strategy to cope. Thanks for reminding me about that.

OP posts:
Maestro12 · 01/02/2023 20:48

*medication not mediation ( although frequently feels like we need that!)

Also to add his has worn off by the end of school ( from about 1.30) so I don’t actually see much of the direct benefit!

MissHavershamReturns · 01/02/2023 20:50

It is much more effective at higher doses. I have a long thread running on this in SN chat

MissHavershamReturns · 01/02/2023 20:51

You will see we saw v little effect at 10 mg but at 30 mg ds is a transformed child.

LoveMyADHD · 01/02/2023 21:00

@Return2thebasic Why you feeling low? Seems to be working doesn’t it? Your probably need higher dose that’s it

we ve done great with this drug (just finished 11+, it’s be impossible if not on meds )but yes we do build tolerance so we break in the weekens

@MissHavershamReturns ’s thread mentioned above has lot of good info

Dontknownow86 · 01/02/2023 21:01

@Return2thebasic I totally understand I struggle with saying the same things I heard back to myself and deciding I'm lazy / just not trying hard enough etc. I'm really trying to work on cutting myself some slack but it's easier said than done.

I also think there's a tendancy to subconsciously 'decide' you aren't going to make an effort because part of you knows if you do you'll just feel worse when you zone out / it takes hours to get anything done / start feeling that hair ripping boredom feeling etc. and then you're still told you haven't tried that hard. I hope that makes sense!

Return2thebasic · 01/02/2023 21:28

Maestro12 · 01/02/2023 20:47

Hi OP - just to say it took I think at least 12 weeks and probably longer to get the right medication and dose for my DS.

Medikinet only had limited impact - I remembered feeling panicked and depressed that mediation wouldn't work for him. We switched to Elvanse and that did make a difference but he is on a relatively high dose of 40mg - he’s only 10 and very slight. Dose doesn’t relate to weight etc.

It was also accompanied by some changes at school so I’d agree medication won’t make the difference on its own but it has made a huge difference to him.

We don’t take at weekends or holidays as it has a big impact on his appetite.

@Maestro12 , I thought I was prepared for weeks/months journey to search/trial the right med and dose. But I really underestimated the highs and lows of the emotional rollercoaster.

I'm not sure our psychiatrist 's approach. Would he ask us to take weeks before going up a small dosage or just a couple of weeks. And once we tried with one, if happy with the results, shall we pursue to try another one to see if more optimal or not...

What changes have been made in school, may I ask? Our psychiatrist only sent us a general pdf file for school guidance. I don't think it serves much purpose, but don't know what to ask school for, as DS is not on the disruptive side and the impact of his condition is mostly academically but that has been covered by home tutoring along with 11+.

I will need to investigate a bit more about med break. But we need the weekend to revise, so it's not an option to stop med during weekends.

OP posts:
Return2thebasic · 01/02/2023 21:30

MissHavershamReturns · 01/02/2023 20:50

It is much more effective at higher doses. I have a long thread running on this in SN chat

Thanks! I saw your post and have been going through it and have reached page 8 last night 😂Will keep going. Lots of information and I bought the book by Prof. Peter Hill you highly recommended. It is a fantastic read!

OP posts: