I'm sure this is nothing to worry about but DD(16) has just been told she has a heart murmur and is now booked for ECG and ultrasound. So I am worrying. And have googled but google is no help with the not worrying. Has anyone any thoughts on this?
I had one at about 13. I remember going for lots of tests. I don't have one now so it was either a one off or I grew out of it. It never stopped me doing anything - sport was my life and I was very active.
My sister has had a heart murmur all of her life with no ill effects - they are very common.
My youngest son is having treatment for leukaemia. At his checkup on Monday, the consultant could hear a flow murmur. She said that they can occur due to anaemia, amongst various causes, are transient and are almost always innocent - she was not at all concerned. It may be that it is that sort of murmur?
I hope all goes well and that you don't panic too much.
Dd 13 has a ventricular septal defect that was picked up at her 6 week check. It has never caused any ill health ( it is very small ) and they think it will probably close up eventually. It is not always a cause for concern.
Ds was diagnosed with one at his pre-school check aged 4. He had all the tests and we were told it was an 'innocent' heart murmur. He's now 19 and we've had no worries or signs of anything. We were told it was found just because he was skinny and you can hear the blood flowing through better. Don't know how true this is. When dd came along 5 years later, we discovered they'd stopped doing the heart check at pre-school check
Has your dd been seen by a cardiologist or have all the appointments so far been dealt with by the GP? If being dealt with by GP, make sure that when you chase the echo the GP gets involved if admin type people stall you and say she has to wait longer. If she is being referred to cardiology, ask your GP to choose a cardiologist with expertise in congenital heart problems. If you are lucky, your local hospital may offer a dedicated clinic for this, particularly if its a larger teaching hospital. If it isn't, you can ask to be referred to one.
If you are already in the cardiology system, don't be afraid to ask the cardiologist what experience they have with younger patients.
At 16, your dd is still in the inbetween stage. She has the right to see a doctor without you, but she certainly has the right for you to be present too. So just go to the appointments with her as normal. Good hospitals have procedures to manage patients transition between child and adult services. If need be, ask for policy on this, if you think that this is necessary. I'm a heart patient, and I remember how much I hated going to appointments and being sat in a waiting room full of old people as a teenager and young adult. To a certain extent this is unavoidable, and being sat with two year olds would not have been any better. Just be there for her.
Then don't go to your local hospital. You have a right to choose which hospital you are treated at, as part of the NHS Constitution.
My local hospital is not particularly geared up to complex conditions so I don't go there. My dd used to see a cardiologist there, but it was an outreach clinic run by a central London teaching hospital, so the consultant would travel out with his team.
If you are willing to travel, then think about asking for a referral to a teaching hospital with a good reputation for cardiology (they pretty much all do). I know that you do not know what type of heart problem your dd has until the tests are done, so you are all still in limbo until you have answers. As many others have said, heart murmurs are often innocent. If she does need follow up, then you do have a right to choose where and by which consultant.
Even an abnormal ECG may not be anything to worry about. I have a heart murmur and my ECGs always raise questions. However I have had lots of tests, a couple of echocardiograms and the cardiologist is happy that all is ok and I no longer have to see him. Hope all goes well for your DD.
Barbarian - my dd has a significant heart problem and is now treated at a unit that deals with adults with congenital heart defects (the Queen Elizabeth at Birmingham) once she was too old for Children's. I still go into her appointments with her and they are quite happy to answer any questions I have or that dd wishes me to ask on her behalf.
Have they told you to 'hurry up' the Echo? Really that is the GPs job, the cheeky bugger. If he thinks it's urgent then he can get dd seen within a few days if he wants to.
These are the specialist centres for grown-ups with congenital heart defects so are a good starting point for good young-person centred care. Many of these units do outreach clinics at local hospitals. It depends where you live. (your hospital isn't Stafford is it?)
Hopefully it will turn out to be an innocent murmur.
Many thanks, Dame S and co. Yes, GP told me to 'hurry up.' Hospital were awful when I rang to do it- said 'She's 16, we can't talk to you. Please put her on the phone.' Which was no help because she was at school for one thing, and anyway working her way through hospital switchboards and booking her own echocard. seemed a lot to expect.
I ended up going to GP and doing a bit of a moan.
I know it's probably nothing. I was just shocked at the system as much as anything. Thank you all again.