Worried about DS's Echocardiagram results (16)

[VoldemortsNipple]

Brief overview.
Six months ago I took DS to the GP as we were trying to help him gain weight. DS mentioned to the GP that he often had dizzy spells. She checked his blood pressure and it was fine so she ordered some blood tests which all came back normal.

In follow up appointments, DS explained that the spells were happening more frequent and seemed to be getting worse, ie; after he had eaten and was sitting down relaxing. Symptoms included rapid heart rate, breathlessness and sometimes chest pain. DS was sent for an ECG which showed irregularities with the T node. We were told this could be normal for his height and weight but was sent for an Echo for further analysis.

On Wednesday we were back at the GP for the results and she told us his heart muscles appear to be weak and not working efficiently. After speaking to the cardiologist, DS now has to have an MRI and has been told not to take part in any strenuous exercise.

Dr Google has frightened the life out of me and I have a 6 week wait for the MRI.

Place marking. Dd2 (21) hospitalised twice recently with rapid heartbeat and palpitations. Now on beta blockers. She is lethargic and losing weight. No exercise, coffee, alcohol. Thyroid tests have come back ok. She has echo cardiogram on Monday. I am worried sick, as is she. I dont know what's wrong with her but something isn't right. I hope your Ds is ok

Sorry about your DD Demented, have they given any indication to what it might be?

DS has been healthy enough apart from this. I had put his dizzy spells down to normal teenage hormones or anemia at worse. Luckily he's a lot more relaxed than I am. He's so laid back, he's virtually lying down. He wants to join the army and I can see it slipping further away with every doctors appointment. Google points to some sort of cardiomyopathy and sudden adult death syndrome

bump

Hey voldemort they mentioned some thing or other - 3 initials and I can't for the life of me remember it- but there is no fixed diagnosis yet. I am so worried for her. She is a shadow of the bright bubbly girl she used to be.

i have inappropriate sinus tachycardia
it sounds similar to what dementedma dd is experiencing.
my heart gives a jolt then speeds up to anything up to 160bpm(on the ecg but im sure it goes higher than this )
i have low blood pressure so couldnt tolerate the beta blockers.
i cant exercise, drink caffeine - take certain meds like lemsip,
i have to keep my pain under control as being in pain can set it off, i have to make sure i dont get dehydrated - that sets it off -- if i get too hot or cold ,that can set it off -being startled -sets it off-
im supposed to go to a&e for monitoring each time ,but by the time i get there and get hooked up to the ecg its usually over so i dont bother.

i had to have a 24 monitor study and my heart rate goes up to 135bpm even when i m sleeping and it showed that for the 24 hours it was on, my heart rate is over 100bpm for 30% of the time,so sometimes im not even aware of it beating fast.

Its so true what they say, that you never stop worrying about your DCs. DS is usually really fit and healthy. We only went to the doctors hoping that he would be prescribed some nutrition drinks to help with his diet. He was probably about 10 the last time he needed to go to the doctors.

I keep waiting to read something that says dont worry, some peoples heart functions less than average but they live normal healthy lives.

dd 18 has just had an echocardigram , she blacked out mid sentence - (fell face first into a table- ouch) without any warning . no history of fainting ,dizziness and as she didnt get any weird feelings before hand ,it was just bang lights out -they think its her heart not her brain, apparently if its caused by your brain you get some warning .
results not back yet,
how long until you got the echo results?
how come the mri wait is so long?

wfrances We have had the echo results. They are what showed that the muscles are weak. They took about a week to come back although we waited about 10 days because the GP who has been dealing with the case was on holiday. She had already spoken to the cardiologist before our appointment and had asked the receptionist to make an emergency appointment because she didnt realise we were booked in that day. She was apologetic about the waiting time for the MRI, saying thats the nature of the NHS.

Although Im worried, DS is less so. So maybe its a blessing in disguise as he has his GCSEs coming up. From what Ive read, the Echocardiogram is used as a diagnostic tool. The need for an MRI is to gain more information about the level of damage to the heart and to detect complications so they can manage it better.

mri wait appointment times are ridiculous- ds needed one for his knee ,he waited less than 2 weeks ,
df has just been dx with prostate cancer and needed to see if its spread and does he need treatment and had to wait 5 weeks.
i was referred last week and just had my appointment date for 2 weeks
all at the same hospital.
i suppose you could read it as if they thought it was very very bad ,he would be admitted and scanned straight away- thankgoodness you took him and echo was done.

sorry im not with it today,the point i was trying to say about scan times is you would have thought that cancer/heart /brain scans would be more urgent.

Svt is what I was trying to remember but this inappropriate sinus tachycardia sound exactly like what dd2 has!

wfrancis that's nuts! Maybe it depends on the specialist carrying out the scan rather than the department. Still nuts though.

demented SVT sounds exactly like my heart although I was told I just had ectopic beats.
Half of me thinks I should just phone an ambulance next time he has symptoms and exaggerate a bit

DH had hypertrophic cardiomyopathy which is genetic (only found out last year when he had a cardiac arrest but survived) and my kids have to have ECG and Cardiac Echo every year now to see if they have it - 50% chance.
Have a look at www.cardiomyopathy.org/uk It may be useful to you.
I've was so calm for 11 months after their last test and then couldn't sleep for weeks worrying about the results, thankfully all ok again. We've cut back on competitive sports but trying to be realistic that they might not have the condition.
My thoughts are with you and I hope it all goes well for your son.

APMom I'm suspecting DS has hypertrophic cardiomyopathy going by the symptoms he's been having and the discussion with the GP. DS doesn't take part in competitive sports but he is involved with the army cadets, so it means he won't be able to take part in lots of activities and camps. He also wants to join the army and that doesn't look possible either
I wish she has given me a name of what they suspect it is but I understand why she hasn't. It's going to be a long 6 weeks

I was diagnosed with cardiomyopathy at 13 and still doing fine 26 years on. I would also recommend you contact CRY (Cardiac Risk in the Young) as they have great resources and opportunities for both you and your children to meet with others in the same situation. They also offer subsidised screening for anyone who wiuld like their child tested.

bouncingBelle Thankyou for replying that's really reassuring. There is not much We can do until we have a definite diagnosis. I feel at least I'm prepared now for whatever the news and we'll just have to take it from there.
demented hope your DDs Echo went ok

bouncingbelle and APMom can I ask if you/DH were getting any symptoms and if they got better with medication. Thanks

Thanks. They didn't find anything sinister so thats good. She now has to see the cardiologist again. She is in the middle of uni exams so trying to keep her calm at the moment

I was getting dizzy spells/feeling sick during exercise,resulting in a collapse when I was 15. I had an ICD implanted when I was 18. Didn't make me feel any different, just meant if my heart rate went funny it would be there to shock me out of it. Started on medication in my mid 20s which I think made me feel a little less tired but that's about it. All in all, I (and my relatives who also have it) live 'normal' lives with it - as do very many people I know. Sometimes a little adjustment here or there (and the trauma of being refusing Ivf in my case) but apart from that it's all good. The danger is when you DONT have the diagnosis....