Please or to access all these features

AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

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:
New posts on this thread. Refresh page
ADHDnewbie · 09/10/2023 14:42

Just no further ability to focus in class or on homework then before and this is the reason she wanted to try it

OP posts:
NoWinterYear · 09/10/2023 14:07

Op, it's possible that it might take a while to get the right medication at the right dose. Usually I'd think that especially with the first dose you would notice something if it had an effect on you. If she genuinely hasn't noticed anything she might need to increase her dose (and it's definitely worth increasing slowly as the side effects can be fairly unpleasant and usually kick in much quicker).

However having said that what exactly do you mean by the medication isn't making any difference or that there has been no change? What exactly did you expect to change and what hasn't changed?

Ideally, once she is used to the medication at that particular dose she shouldn't feel massively different but certain things (like shifting her focus when required or focussing on what is required) should be easier.

Also, it takes a while to learnt to be effective with the medication. They usually don't help with procrastination. On the contrary. She might need behavioural strategies to get her started working on a task but once she has started it should be easier to stay on task. (As an example)

ADHDnewbie · 09/10/2023 14:01

Has anyone had very bad nausea on delmosart?
DD keeps being sent home from school since she started it complaining of feeling sick 😢

OP posts:
Littlefish · 09/10/2023 10:30

My daughter (18) is on 50mg Medikinet xl. This has been her stable dose since she was 14.

ADHDnewbie · 04/10/2023 12:39

She is really looking forward to trying the higher dose on the weekend

What doses are your children / yourselves at if you don’t mind me asking?

OP posts:
anon0007 · 04/10/2023 09:52

That dose isn't working for her. The joys of titration.

Ffsadhd · 04/10/2023 09:22

UsingChangeofName · 03/10/2023 22:51

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.

It's definitely not a 'Private vs NHS' issue. The (NHS) Dr who is supposed to be supporting my dd, has been hopeless. She is constantly having to chase him. He only answers specific questions put to him, and doesn't offer explanations to her. Obviously, you don't know what to ask about when you don't know what you don't know.

Agreed. Our NHS paediatrician is dreadful. Minimal information and desperately hard to get hold of for advice. Most people who I know who have gone private are getting much better support.

123Squirrel · 04/10/2023 09:12

Usually you'd feel the medication start working around hour after taking for XL types, but it likely won't be very effective for ADHD symptoms at that dose.The 1st day or 2 can feel bit more intense till body gets used to it, but can sometimes feel more sleepy at that dose.
It's good there are no side effects as makes it much easier to continue, some you get do pass as adjust to it.

ADHDnewbie · 04/10/2023 08:15

Thank you for all the replies

The dr did explain the process but did say we should see a difference on the first day which is why it’s been confusing

The good thing is that there are no side effects so hopefully that will be the case on the 27mg too

She didn’t seem very interested in trying a non stimulant when I asked and said they are never as effective as stimulants

OP posts:
UsingChangeofName · 03/10/2023 22:51

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.

It's definitely not a 'Private vs NHS' issue. The (NHS) Dr who is supposed to be supporting my dd, has been hopeless. She is constantly having to chase him. He only answers specific questions put to him, and doesn't offer explanations to her. Obviously, you don't know what to ask about when you don't know what you don't know.

123Squirrel · 03/10/2023 22:41

YABU and expecting too much too soon! The point of titration is to start at the lowest dose to minimise any side effects and these can be severe in some people, it's known to increase BP/ HR. Then gradually increase dose till you find the sweet spot with maximum benefits on adhd symptoms for tolerable side effects, they should push above to work out if better or worse rather than arbitrarily stop at say 54mg because that suits most of their patients as it's so highly individual and to do so would leave some with sub-optimal results.

Here's the Additude Ultimate Guide To ADHD Medications which may help

Its probably a slower process for children and but when I titrated on methylphenidate XL we did the following plan
Wk1 1 x18mg
Wk2 2x 18mg =36mg
Wk3-4 3x 18mg = 54mg -
At Wk3 they'd decide what to order for next month's prescription depending on the results
you may stay on 54mg, drop to 36mg or increase up to 72mg The max adult dose is 108mg (it's not dosed on weight).

I would have to submit a monitoring form each week to track side effects, any changes to ADHD symptoms, mood, sleep, appetite and check BP/ HR/ BMI. This would be reviewed by Titration Nurse or Psychiatrist and they'd advise on side effects and treatment plan accordingly. If had severe side effects would notify immediately and you can just cease taking the meds while wait for them to contact and advise as unlikely to be same day.

Methylphenidate is available in a range of brand/generics for both XL (and IR) but while the active ingredient is the same other ingredients vary as does the dosing ratio's in 3phase tablet so it's possible that it won't feel identical and may have different side effects. I had to stop taking one brand due side effects but thankfully had started titration on another so knew it wasn't actually the active ingredient.

The 2 stimulant families (methylphenidate in XL /IR) & Amphetamines ( lisdexamfetamine (XL) and Dexamfetamine (IR) the US also has Adderall ). The stimulants have the best efficacy which is why they're the first line of treatment over the non-stims.
Likely all down to our genes, but some find one family may have little to no effect even at high doses so would then switch to the other family. The majority will notice some benefit with both types but one family may suit them better in terms of benefits Vs side effects. Then those that didn't suit stimulants or have conditions which make them unsuitable can try the non- stimulants (Atomoxetine & Guanfacine)

Hormone fluctuations often make ADHD symptoms worse and meds seem less effective before & during periods.

Some also metabolise medication faster so it doesn't last as long as it should and they may be prescribed a top up of short release to extend or try different medication type.

The Ultimate Guide to ADHD Medication Cover

The Ultimate Guide to ADHD Medication

The Ultimate Guide to ADHD Medication explains everything you need to know about the medication options available, plus how to achieve optimal benefits and fix common side effects.

https://www.additudemag.com/download/ultimate-guide-adhd-medications/

Rosecutting · 03/10/2023 22:37

Just to add, dd was diagnosed with inattentive adhd and is taking Elvanse.

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 😊

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.

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!

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.

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!

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 21:30

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!

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.

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:
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.

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.

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:
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.