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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

ADHD medication making no difference!

37 replies

ADHDnewbie · 03/10/2023 20:18

My 13 year old DD recently started on 18mg of Delmosart and apart from a bit of a decrease in appetite reports no differences at all.
Teachers say the same, absolutely no change.
Is this normal until the dose increases to 27mg next week or is it likely this medication doesn’t work for her?

She’s so upset as was hoping to be more focused in class and be able to absorb the information

OP posts:
NotObligedToArgueWithStrangers · 03/10/2023 20:19

That's a starter dose. They will put it up in stages until they see a difference.

Original poster
ADHDnewbie · 03/10/2023 20:21

What’s the “ normal “ dose for this age range though or does that not exist?

Why would they start on 18mg if unlikely there will be any difference at all?!

OP posts:
Ohdearwhatnow4 · 03/10/2023 20:25

Cause its a class A drug and her body needs to get use to it, it might take months to get the correct drug and dosage. Don't give up just yet

Bruisername · 03/10/2023 20:27

My dd has started on a different one and has started refusing to take it because it’s not making a difference. It’s frustrating because I’m sure it’s the dose needing building up but she’s giving up afte 6 weeks

ChaosAndCrumbs · 03/10/2023 20:29

Usually they try to start low and gradually increase medications to try and reduce side effects, as well as being able to monitor more carefully which dose suits a person. Plenty of people find a lower dose works well, but that’s hard to find if it’s not started slowly and gradually seen where the best dose sits. Sometimes a doctor might also slightly reduce a dose later (when taking higher dosage) as they and the patient (or patient’s parents) realise it worked better on the dose down. I’d maybe ask the doctor to explain it as they’ll be able to clarify what a sudden large dose would do. Usually it’s explained in the appointment why it’s done and that the benefits may not be seen until a higher dose.

Original poster
ADHDnewbie · 03/10/2023 20:30

I understand that but I was told by the DR that the effects should be clear within an hour of taking it - saying that she has only given a week of 18mg before 27mg so maybe the increase will help

OP posts:
Pr0fessionalLurker · 03/10/2023 20:32

It took us two years to get to a settled dose. You have to build up the dose. We are now on 54mg, similar age to you.

Original poster
ADHDnewbie · 03/10/2023 20:37

Was there any effects on the lower doses or not really?

OP posts:
Freshstarts23 · 03/10/2023 20:40

Did they not explain this to you in detail? They should have.

Ffsadhd · 03/10/2023 20:40

There's a book called the parents' guide to adhd by Peter Hill which I would recommend. It explains the process of titration (finding the right dose) and how drugs and side effects etc work. Much as we'd love medication to wave a magic wand there's still a lot to do!

Freshstarts23 · 03/10/2023 20:40

Was you prescribed privately by any chance?

WineWithAView · 03/10/2023 20:43

Tell her not to be disheartened. It takes time to find the right dose. And they need to keep an eye out for any side effects so a slow start is better. Are you saying she's moving on to 27mg already after a week on 18mg?

DS10 is on delmosart. He started on 18mg and didn't have a review for 6 weeks.

We noticed a difference at home immediately on 18mg especially with his hyperactivity, emotional regulation, but the teacher didn't see any change at school where he presents very differently.

The increase to 36mg definitely resulted in a change at school.

Good luck to your DD.

KrisAkabusi · 03/10/2023 20:44

You posted three days ago expecting to see a change on her first day. It was explained then that this is a starter dose and it will take time to see an effect. Your expectations are way too high here, it could take weeks to get this right. Keep giving her the current dose and then discuss it with her doctor at your next appointment.

Original poster
ADHDnewbie · 03/10/2023 20:45

Yes privately assessed as well as medication as the waiting lists were too long via CAHMS

Yes 18mg for one week then increasing to 27mg for 2 weeks before the next review

OP posts:
WildCherryBlossom · 03/10/2023 20:54

It takes a long time to get the right dosage for each individual. Also medication is not the only solution. Has your psychiatrist not made any other recommendations? Tweaks in diet perhaps, meditation techniques etc. everyone is different and you need to find out what works for your child. The medication is not a ''magic" pill that suddenly takes away the adhd.

Lammveg · 03/10/2023 20:59

I get it can be frustrating but you have to be careful of side effects. Ideally you want the lowest possible dose that is effective to reduce likelihood of side effects and this is why the dose is titrated. Please discuss with the psychiatrist at the next appointment why this is important.

Original poster
ADHDnewbie · 03/10/2023 21:07

We have been doing all the other stuff for 3 years - she was diagnosed in 2020 and we are only just starting medication because of her self esteem issues arising from not being able to focus in school etc

She doesn’t need it for any other reason - the rest can be managed in various ways but the school work cannot be sadly 😢

OP posts:
WildCherryBlossom · 03/10/2023 21:20

Ok, well try not to get too disheartened. I'm sure you will get there with the meds but it might take quite a while, not just to get the right dosage but also the right medication.

Just one thought - I'm not sure about the meds your DD takes but one of my DCs takes methylphenidate which shouldn't be taken with acidic foods (eg swallowed down with a glass of orange juice) as the acid reduces the effectiveness of the drug.

weebarra · 03/10/2023 21:30

Titration for DS1 took ages, especially as he has renal stenosis so we had to be careful with his blood pressure. He's nearly 16 and on 54mg of Xaggatin. He is still very very bouncy in the morning and evening but can focus at school. It takes time!

Freshstarts23 · 03/10/2023 21:31

I had a feeling it would be private as there’s no way CAMHS/Nhs would send you away with such a lack of information.
But as others have said, it might take quite a while before you find the right dose or even the right medication.

weebarra · 03/10/2023 21:34

Yes, they originally tried DS1 on a non stimulant (atomoxetine) which worked for a bit and then didn't!

Littlefish · 03/10/2023 21:55

My dd started on 5mg of methylphenidate and went up in 5mg increments. We didn't see any effect at all until she reached 40mg!

Her final dose was 50mg.

It's completely normal to start at a lower dose which is gradually increased over time. It's called the titration process.

Littlefish · 03/10/2023 21:56

Freshstarts23 · 03/10/2023 21:31

I had a feeling it would be private as there’s no way CAMHS/Nhs would send you away with such a lack of information.
But as others have said, it might take quite a while before you find the right dose or even the right medication.

We used a private clinic and we're given a huge amount of information.

This isn't a private vs NHS issue!

OhCrumbsWhereNow · 03/10/2023 22:27

It seems to be a bit of a lottery.

DD (14) is on methylphenidate. We started on 5mg twice a day of the instant release back in June, then moved to 10mg twice a day after a week. Started Equasym XL 20mg 4 weeks ago.

We got pretty instant results straight away in terms of it helping with the hyperactivity symptoms, but it wasn't till she started the Equasym XL that we started to see an effect in terms of focus in class. Seeing the consultant in a few weeks and DD is keen to try pushing the dose up a bit more.

When I've asked her about it, she just says she's less fidgeting, more one thought in her brain and that geography and physics are more interesting than she thought now she actually focuses. But it's not as if she's suddenly taken a magic pill and facts are at her finger-tips - more that she doesn't treat the topic they've studied for last three weeks as something completely unheard of when she has to do homework.

One of her cousins has had a similar response and was doing well on Concerta 20mg for a number of years. Now looking at a dose increase.

However two of her other cousins (yay for genetic inheritance) did not get on with methylphenidate at all. One hasn't found anything that works, and the other is finding Strattera works well.

So, it may be that it's not the medication for her, or the dose isn't right yet, or her expectations are too high. I believe in the US they're now using tests that can pinpoint the medication you are most likely to respond to.

Definitely recommend the book a PP suggested. It's incredibly helpful and useful.

Might also be worth trying a different brand of methylphenidate - some have different amounts of instant and slow release percentages, and sometimes you just get on better with a particular brand.

Rosecutting · 03/10/2023 22:35

Don’t despair
My dd was started on a different medication for ADHD but initially on lowest dose which made no difference.
It took around 4-5 months of doseage tweaks to get it right and now she like a different person.
Also be aware that any changes happen gradually.
It’s when we reflected back that we realised how different she’d become. All positive!

Hang in there 😊

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