Cardiomyopathy & PE question (sorry)

[belledechocchipcookie]

DS and I are waiting for a referal for tests as my mother has some sort of cardiomyopathy which her cardiologist thinks is genetic. Ds has permanent blue/purple nails, he becomes out of breath quickly and he gets pain in his feet and ankles. He was checked by a paediatrician last year for this, it was put down to asthma and hypermobility syndrome but she didn't do any cardiac tests apart from listen to his heart with a stethescope. I'm just unsure as to whether he should be doing PE until he see's the cardiologist and has the tests but I'm unsure I'm right?

Thank you

[fuckmepinkandcallmerosie]

When this happened to DS (episode in school, blue lighted to hospital all v dramatic) they said no PE til tests were completed. HTH and you get a good result.

[fuckmepinkandcallmerosie]

BTW DS had ultrasound of his heart (which my then MIL insisted on telling everyone was a deep laser scan of his heart lmao) and ECG's and some other tests but all was clear.

But it is very very worrying.

[belledechocchipcookie]

Thank you. I just don't want him to do PE if it puts him in any danger. It could be a while before the appointment comes through.

[fuckmepinkandcallmerosie]

We were able to get an appointment very quickly by pushing the paediatrician. But I remember the worry - I was beside myself, and he was a pretty active boy at the time and he didn't want to miss any sport.

[belledechocchipcookie]

Her consultant is waiting for her 24hour ECG, he then has to write a letter for me to take to my GP to ask for a referal. He hates PE, he finds it painful and gets out of breath so he'll be happy to have an excuse to sit out.

[fuckmepinkandcallmerosie]

DS collapsed in a lesson. He said he could feel his heart going slower and slower and then he just passed out.

School phoned ambulance - secretary (who was a friend) phoned and I still remember the sinking feeling when she said "now fuckmepink I don't want you to panic and drive like a loon but..."

[saggarmakersbottomknocker]

Belle - have you been to your own GP? There's no reason he has to wait for the letter from your mother's consultant he can refer without. I think I would go and insist that he's referred.

How old is your ds? My dd's cardiomyopathy is currently resolved but when she was symptomatic she was taking part as much or as little as she felt able. It very much depends how aware they are of how they are feeling. However dd is monitored very closely and this was the advice of her cardio.

[belledechocchipcookie]

God, how scary for you rosie. What a relief that he's OK.

I've not taken him yet, I took him last year as I was worried about his shortness of breath and blue nails. He referred him to a paediatrician but she didn't do any tests. He has developed a wheat allergy so I need to take him about this aswell. Ds has just turned 12. I can't get him to the GP until next week, we have one who's helpful but it's almost impossible to get an appointment with him.

[fuckmepinkandcallmerosie]

I know belle it was very scary. I would take him - DS was 17 at the time so just on the cusp of adult medicine iyswim?

Try these people maybe? they do checks for about £30 IIRC they might be able to help?

[belledechocchipcookie]

I can take him on Monday. He has cricket tomorrow, the school are very good and won't push him in PE as they know he can't manage it. They offer cardiac screening at school but I think it's for year 10s.

Thank you

[UndiscoveredApprentice]

ny son did no PE from the second his familial cardiomyopathy first became an issue, after several fainting fits. He is fine,but we kept him out of PE to be on the safe side.

[noddyholder]

I have HOCM and my ds was tested at 14/15 and was clear. He will have another scan at 17. He is not sporty and shows no 'signs' but I still worry. Hope it all goes well. As my doctor says although it is scary people who know are very lucky as then they are treated and monitored HTH x

[belledechocchipcookie]

Ah, thank you. It must be such a relief that he's OK Apprentice.

[belledechocchipcookie]

Thank you noddy. It must be stressful for you though.

[noddyholder]

It is but was much scarier before I knew what it was.

[belledechocchipcookie]

I don't think the NHS is very good at spotting heart problems. He should have had thorough tests last year when I think about it.

[noddyholder]

No it took ages for me. Several doctors diagnosed anxiety and said it was because I was a mum and I have other health problems and I was worried about life in general more than before ds was born. No I told them I am gasping to breathe sometimes out of the blue and I am not anxious at all (apart from this) A locum polish girl spotted it after much to ing and fro ing

[fuckmepinkandcallmerosie]

I agree Belle. In my case, there is a history of cardiomyopathy in my (now ex) H family, with two cousins in their twenties just literally dropping dead (both farmers one doing pigs, one milking cows and down they went).

It just didn't seem to occur to anyone that the rest of the males in the family should be checked until DS had his "episode". We were lucky, our paediatrician is also a family friend and was amazingly brilliant and DS was seen the next day by a heart specialist at a large regional centre. But it is very very worrying.

[belledechocchipcookie]

My mother mentioned my aunt (she was overweight, very poor diet & dropped down dead at 50 something) and her consultant said we should all be screened. He said she'd have had this for years, meaning it's been missed by her hospital for years also as she's been in and out with chest pain etc.

Thank goodness it was picked up eventually noddy. I'm so sorry to hear of your family rosie