theDIBB Guidebook

mcplod · 20 Mar 12, 07:07 PM

I picked DS up from school today and he looked shattered, (he'd just had PE in last session), he said he was tired and asked teacher if he could sit out, I asked DS how tired he was, and he said he had pains in his chest and his heart felt like it was ice cold? I've rang the cardiac sister who said if he says he's tired anymore we should bring him in for an ECG and spoke to the PE teacher who says that DS looked really tired and that they weren't particularly doing excessive exercise. PE teacher thinks DS shouldn't be doing PE, but I think it's good for exercise and social skills so teacher has reluctantly agreed to one session a week. DS seems ok now but I am wondering if it is right to fight for inclusion in PE? DS wants to do it but says he needs to rest too? Also not sure if I should wait for next session to get ECG booked? Would be interested to hear from others with congenital heart disease, thanks.

shona · 20 Mar 12, 07:20 PM

Can't answer on congenital heart disease but when my son was younger by chance we found he had a heart mumur and at the time got tired very quickly. It turned out he was anaemic and he now takes iron supplements and the murmur only shows up if he is anaemic as the heart has to work harder. Halib orange does a multivitamin with calcium and iron if that helps.

**Hidden mickey** · 20 Mar 12, 07:22 PM

i would go have a chat with your GP put your mind at rest

mcplod · 20 Mar 12, 07:56 PM

Quote:

Originally Posted by Hidden mickey

i would go have a chat with your GP put your mind at rest

The cardiac sister said they will do an ECG at hospital no probs, but as DS only had review with cardiologist a few weeks ago and everything was the same then I'm not sure whether we'd be wasting people's time? Just wondering about whether we should hold off on the PE?

**Hidden mickey** · 20 Mar 12, 07:59 PM

Quote:

Originally Posted by mcplod

The cardiac sister said they will do an ECG at hospital no probs, but as DS only had review with cardiologist a few weeks ago and everything was the same then I'm not sure whether we'd be wasting people's time? Just wondering about whether we should hold off on the PE?

you could call i am sure they wouldn't think you were wasting their time

mcplod · 20 Mar 12, 08:02 PM

Quote:

Originally Posted by shona

Can't answer on congenital heart disease but when my son was younger by chance we found he had a heart mumur and at the time got tired very quickly. It turned out he was anaemic and he now takes iron supplements and the murmur only shows up if he is anaemic as the heart has to work harder. Halib orange does a multivitamin with calcium and iron if that helps.

Hi Shona, our DS has quite a profound murmur too, it's that loud we normally have a few students asking to listen to his heart when he goes for check ups, it does mean you get tired easier but was worried when DS mentioned pain and heart feeling ice cold but cardiac sister hasn't heard of that before, so maybe DS got confused cos he was outside, ie cold in general?

scots minnie · 20 Mar 12, 08:18 PM

Hi our dd has complex heart disease and if she were complaining like he is I would definetly get him checked out. Also the worrying point of the pe teacher saying he's tiring. It could be something simple but better safe than sorry.I think it will make you feel more reassured. Xxx

mcplod · 20 Mar 12, 08:27 PM

Quote:

Originally Posted by scots minnie

Hi our dd has complex heart disease and if she were complaining like he is I would definetly get him checked out. Also the worrying point of the pe teacher saying he's tiring. It could be something simple but better safe than sorry.I think it will make you feel more reassured. Xxx

It is worrying, also what's got me worrying a bit is that at our DS last review I asked the consultant about withdrawing DS aspirin due to concerns about internal bleeding and Reyes syndrome. Cardiologist said he had dealt with cases of internal bleeding but not Reyes, but said the heart surgeon would prefer if we kept on with the aspirin as he believes it can prevent clotting at the conduits but I decided to stop the aspirin because of internal bleeding risks. As it happens DS is having a medical tomorrow to find out if he will be able to learn to do scuba diving so he'll be coincidently getting checked over at the freeman anyway so thankfully any probs and it will flag up, he seems ok now. Just wondering if I should restart the aspirin again?

scots minnie · 20 Mar 12, 09:02 PM

Our dd was on aspirin until her 3rd stage operation in 2008, and is now on warfarin lifelong I know the concerns you have about aspirin and I don't know your Ds condition nor am I a cardiologist but I would be concerned about stopping it against the surgeons advice. Please let us know how he gets on, all kids are a worry but our special heart children a little but more so xxx

mcplod · 20 Mar 12, 10:02 PM

Not sure what surgery your dd had scotsminnie but our DS had human valves transplanted rather than mechanical so we avoided lifelong warfarin as not mechanical valves. It was a big moral dilemma stopping the aspirin but I've decided might be best to start it again but half the original dose, on the advice of the hospital. I'm probably not going to feel settled until the medical tomorrow morning but at least it's not too long now, you are so right though, our heart children are such a worry xxx