ADHD medication and ECGs

[Neurotic1000]

I am incredibly confused
The private doctor who did the assessment has requested I get a private ecg ( gp won’t do it as it’s for private medication ) but can she interpret the results well enough to confirm the medication would be safe?
DH thinks as she’s not a cardiologist that this is very risky - I just want to help DS get through school life 😢

The cause of death was sudden cardiac death, secondary to an arrhythmia

ECG then and ask for an echo.

Sudden cardiac death is often caused by a hypertrophic cardiomyopathy which is the heart muscle - it CAN be genetic. This is what happens when footballers drop down on the playing field.

It is not always the cause and it is not always inherited and it is the combination of exercise and the cardiomyopathy.

An echo is ultrasound that looks at the heart's structure, an ECG looks at the electrical structure of the heart.

I think it is highly unlikely that is the case but I would err on the side of caution before taking a med that can cause arrhythmia.

Sorry I don't mean to scare you, I'm saying the echo as a 'belt and braces' rather than just the belt.

Expect to wait for the echo, for your child this is screening so it won't be a priority appointment.

Thank you so much for replying
Even with a clear ECG and echo would I be taking a risk as surely things could change as he gets older etc?
I struggled to find the private ECG place as he’s under 16 so the GP wouldn’t refer because the reason was for a private diagnosis so I’m really going to struggle with finding somewhere to do an echo I think 😢
Maybe the risks outweigh the potential positives after all

Can you find a private GP? They should do it I would have thought. Or one of the BUPA clinics.

With the family history I would tell the GP you are really stressing and want piece of mind.

I'm saying echo because of the family history, not because of the drugs.

I've been on stimulants for years for ADHD and I get severe palpitations sometimes that are controlled with propanol (beta blocker). They need to check heart function as you can't underestimate what this medication does.theres a reason it's a controlled drug

The GP wasn’t willing to do any type of referral because this is via a private route.
She had to be convinced to take over shared care after 6 months of him being stable on the medication but obviously now it hasn’t got to that point yet.
The private doctor said only an ECG is required - maybe I’m better off cancelling that as I now feel I’m throwing money at an ECG today which isn’t enough to be safe on the medication as even if she says the ECG is perfect, without the echo mentioned, am I taking a massive risk?
I can’t find any private companies who will do an echo without him having symptoms of heart issues which he isn’t.
This all feels like a mess now 😢

I'm on ADHD medication, private diagnosis. I'm in my 40's. I had palpitations and some other issues.

I showed the 24 hr ecg to the psychiatrist.
Before asking for shared care I paid for a private echocardiogram and ecg.

I asked the cardiologist for their opinion on the medication. I then gave the report to the GP and the request for shared care was agreed.

It was another £700 for the cardiologist appointment, but the difference the medication has made has been worth jt.

I would be happy to pay for a private echo if I could find one who would do it but it can’t as he has no symptoms
His dad had a routine ecg and echo after his sister died and he’s still waiting for an MRI over a year later despite it showing some abnormalities on the right side

Sorry do you mean you’re advising echo because of the family history before taking any drugs?
Are non stimulants any difference heart wise do you know,
thanks

@Neurotic1000 have the ecg, the dr will be trained to read it, I wouldn’t be worried about that.

If your anxious about starting your dc on adhd meds due to family heart history, ask for a non stimulant.

My ds had been on stimulants for a year that didn’t work for his severe adhd, made him more anxious and more difficult if that was possible,

he’s been on a non stimulant for 18 months now (jury’s still out deciding if it’s working or not 🙄) but it hasn’t made his anxiety any worse like the other one.

It is advised for regular bp monitoring for the non stimulant (atomoxetine is what ds takes) but not an ecg,

ecg and bp was recommended for his methylphenidate (stimulant) but he would never co operate and never had an ecg for the year he was on it.

psychiatrist at CAMHS said the above regarding bp / ecg. ^

He’s actually never had bp checked either as he also has autism and a learning disability so does not cooperate unfortunately.

Every appointment he creates and they pack the machine away. (I don’t like him not having the vital checks, but not really much I can do) he also takes other medications and 2 shouldn’t be given together ideally but they decided the benefits would outweigh the risks.

I hope you find a solution.

So the ecg was clear and the doctor said usually that would be enough for him to advise medication starting BUT then he said he could do an echo next week ( £500 ) if I wanted and now I’m so unsure what to do 😢

Bumping

So with a family history as you've described, the siblings of the aunt (you or your husband) should be referred to cardiology for further testing. This is really important.

Your child might also be able to be referred, it depends on the area. I'm really surprised the GP won't refer for an ECG, but you should check out https://www.c-r-y.org.uk/screening/#:~:text=CRY%20offers%20subsidised%20ECG%20screening,be%20read%20by%20a%20cardiologist. As they do subsided cardiac checks for young people so you could get an ECG there.

Hope that helps.

Sorry just read your update, if they think your child needs an echo for whatever reason, this is additional for ADHD meds so you should definitely be asking for a referral to the hospital and not have to pay privately.

I'm a nurse and can interpret ECG's.
My husband had to have one prior to starting on a new medication for epilepsy.
I quickly looked at it... said it was fine... the doctor done the same!

If you can afford it I would go for the echo.

As I said it is a belt and braces approach and as your husband has had one that showed something.

I would not say it was needed for the meds, but for the same reason as your husband. This should be provided by the NHS but if you have the cash it will be quicker privately.

Sorry, I don't want to scare you. I just want you to be reassured.

No they don’t think further investigations are needed because the ecg was clear I paid for yesterday but the cardiologist then started offering more tests ( £600 which DH thinks are clear money making schemes ) if I wanted so now I’m confused what I should be doing prior to starting medication

I appreciate it however the nhs won’t do anything - they wouldn’t even do the ecg so now that has come back normal there is no way they’ll refer for an echo.

Even the private clinic said usually an ecg is all they would do unless an abnormality shows so it’s hard to know if I’m being very neurotic as I don’t know how common it is for something to show on an echo when the ecg was clear as DHs ECG showed the right bundle block which is why he had an echo / 7 day monitoring and is awaiting an MRI

You are clearly not going to settle into this until you have covered all bases.

I'd get the additional test.

They will also monitor every few months his height, weight, blood pressure, appetite etc

Ask for a medication he doesn't have to take every day, just school days, like Elvanse.

It was concerta XL they wanted to prescribe 12 hour slow release

I feel like I should be doing all I can but then I remember the doctor saying an echo would be more beneficial if the medication needs increasing rather than before starting it and I don’t think I absorbed all the information so I need to speak to them again for clarity about that

Just wanted to suggest your son may be eligible for NHS cardiac screening including ECG and echo because of the young cardiac death in your family. Have you explored this? CRY (cardiac risk in the young) is a charity that deals with this, lots of information for families in your position. So sorry for your recent bereavement.

As others have said, the vast majority of ECGs are not reviewed by cardiologists and a doctor requesting a medication-related ECG will know what they are looking for. ADHD medication is not associated with increased cardiac risk so this would seem to be an extra precaution.

I think concerta is like Elvanse, you don't have to take it all the time. My DD14 only takes her Elvanse on school days.

You have a choice. Either follow their advice and start, get the additional tests if the dose increases or get the test now.

Thank you for your reply
Sadly he isn’t old enough for the screening and it’s only an ECG they do unless abnormal in any case which we’ve had yesterday and it’s normal but really appreciate the advice
It was reviewed in the private clinic yesterday by a cardiologist and it was him who said that would usually be enough for him to advise starting medication BUT then mentioned echos / 7 day monitoring and confused me into thinking if these things are all options, should I be taking them all 😢