Heart appt for ds.

[macwoozy]

My ds has his appt at GOSH on Tuesday, and I can't deny that I'm bricking myself. He has a 50% chance of developing a heart condition, which for the majority of 'sufferers', it means they can lead a relatively normal life, but for 6% of the population with the disease it means sudden death EVERY year, which in my eyes equates to a whole classroom of kids wiped out in 5 years. Generally the younger the child diagnosed, the worse the prognosis.

My friend keeps reminding me that it also means that 94% of sufferers survive every year, but I can't help feeling negative, and the 6% statistic has been filling my mind every day for the past year.

I have it, and even though I was considered low risk for sudden death, they eventually decided to fit an implantable defibrillator (10+ later, it wasn't until early adulthood when I developed it), so I can only fret that my ds can also be identified as low risk and not have the necessary preventative measures for sudden death until it's too late.

See, I'm becoming neurotic about this. I even stopped ds from going to school in the last week because he gets incredibly stressed(HFA) and has complained about chest pain.

Please wish him luck on Tuesday, I've bribed and threatened him to keep still for his ECHO but I'm not so sure he'll stay still long enough. I've even threatened him with no computer for 1 day which might do the trick although I'm not sure he'll be so concerned about that when he's having sticky 'smelly' stickers placed on his chest.

Just a quick note to say good luck to both of you for Tuesday. My DS has HFA also - he's 11 - how old is your DS?

Good luck for Tuesday

The doctors found that my dd had an aortic aneurism when she was 18 months old, and she started taking beta blockers then to try to reduce the strain on her heart. Hers is part of marfan syndrome, which causes many deaths every year because some people don't know that they've got it until it's too late. They knew about dd having marfan's, but were not expecting her heart to do this until she was much older (if at all).

She's nearly 5 now, and has to have annual echo's to make sure that all's as well as it can be. Most of these have been horrible experiences for her (and for us!) as she just didn't understand what was going on, and would get very distressed and start literally climbing the walls to get away

The last echo was good, because they went at dd's pace instead of theirs. They showed her that her heart was "on the telly", a medical student talked to dd non stop to keep her occupied, and the whole thing was much calmer. It just worked so much better this way, they got what they wanted whilst dd was happy. It was such a relief. It was a real example of how it should be done.

Maybe if you had a word and reminded the cardiac team about your ds' HFA before he goes in, they might be a bit more helpful if he does get upset, and if they understand HFA they might have a way of distracting him.

Have you got anyone that could go with you for moral support?

Hi macwoozy. Good luck for Tuesday - hoping for good news. On the heart forum I use we have a term for this period - PAT. Pre appointment tension. dd has cardiology appy in Feb and mines started already - every little thing is a sign of impending doom.

dd's heart unit have DVD/Video players in the ECHO rooms so we used to take one of her favourites to watch when she was small. It's the iPod now - sign of the times

Let us know how you get on won't you.

Thanks, sorry I coulcn't get online yesterday to reply.

Hi Allthatglisters, my ds is 7, he'll be 8 in a few months.

Deepbreath, I mentioned that ds was HFA last time we went to GOSH, and they were a pretty good bunch. The problem is he's already working himself up complaining about the smelly stickers and the jelly that's slapped all over the chest. I only hope that they'll not ask for an exercise test, no chance of getting ds on one of them. Ds's dad will also be coming along, so I won't be on my own with him. I'm sorry to hear that your dd has developed heart problems, must be so worrying for you

Sagger, thanks. PAT? I've not heard of that before, but I would say I've definately got a case of that. Good luck for February Sagger, I hope all will be well for your dd.

It's when I read threads like Deepbreaths and about your dd Sagger, that I realise how pathetic I must sound. Here I am becoming frantic, worrying about something that might never happen, I mean he hasn't even been diagnosed with it yet. I went on holiday to Turkey in October and the experience was ruined because I was worrying too much about ds, before I booked I even checked there was a nearby hospital, I know it sounds crazy. I really need to get this into perspective.

Thanks for your good wishes. I'll let you know.

macwoozy - I really feel for you, 'PAT' is 100% understandable and must be very tough.

Making sure you go on hol within reach of a hospital is a sensible precaution, imo.

I will be thinking of you tomorrow.

Thanks Blu

Hi macwoozy,

You don't sound pathetic at all. You've already got a lot on your plate with your ds' HFA, and it's only natural that you'd be worried about him having a heart problem too after your own experience.

Would it help to take something along that he likes the smell of that doesn't overload his senses, to take his mind off the smelly sticky pads? Or maybe the hospital could use anti-allergy sticky pads (if they have them) that aren't as whiffy?

Maybe they'd let him help put the jelly on his chest, so it wouldn't be such a shock to him? I know that this won't take away the sensory yuckiness for him though, if that's what upsets him.

My dd hasn't had to do an exercise test yet, but dh (who has the same condition) has. There's no point in your ds doing it if he'll be upset, as it'll skew the results. Dd had to wear a holter monitor at home instead, so they could see how her heart was in a more normal situation.

I'll be thinking about you tomorrow.

It's not pathetic at all.

dd has done a couple of exercise tests - one on a bike as she couldn't manage the treadmill. Would he go for that do you think? Otherwise if he's pretty active at home the holter monitor would do as well I'm sure - although keeping that on might be a trial too.

Will be thinking of you tomorrow.

I think that any exercise test for ds will be out of the question. He hasn't done P.E at school since September, he refuses amd they don't push him so I I don't like my chances! But TBH I think they'll only ask for these tests if he is showing signs of the condition. So I really hope we don't even get to that stage. Yes Saggar, ds is seriously active at home, and if I wanted to get a good reading of his heart under stress I could just tell him he's banned from the computer for one day!

I will ask for the anti-allergy sticky pads, that's a good idea .

Deepbreath, that must have been difficult to get your dd to wear the holter. I even find the holter irritating. But at least they've got smaller over the years. When I first had one they were the size of a walkman!

macwoozy I hope the appointment goes as well as possible.

Thhinking of you and your Ds today, macwoozy.

Thank you

Well it went well He's currently showing no signs of HCM. The consultant was a little concerned about his chest pain and so has booked him in again in 6 months time for another Echo, ECG and a 24 hour holter. I don't know how I'm going to stop him from not tearing the stickers off for a day and a night but no doubt I'll worry about that in July.

It wasn't just the reassuring results that made me feel happier, but the way they dealt with him. I only had to tell the nurse at the beginning that ds has HFA, and she must have told all the others. They were really patient and understanding. The consultant sat down on the floor when trying to talk with him rather than talk from her desk which was lovely. Ds had brought his teddy along, and was eager to place another sticker on his chest(teddy previously got one when ds had his squint operation), so he was little distracted when initially being in the ECG room but he did find the experience pretty awful, the jelly and the stickers got all abit too much for him.

I told him that he could pick anything from the hospital shop if he allowed me to talk to the consultant at the end. I was doubtful that bribes would work, he can't normally think too far ahead when he's in uncomfortable surroundings, but he was really good so who knows! Thankfully he has no real sense of monetry value and just picked a £2 plastic dog ornament. I expect alot of kids would have picked the most expensive toy, so I reckon I got off lightly thereNo cheap stuff in that shop!!

Thanks again for your good wishes. No doubt I'll be back with the same post in 2009.

Oh Macwoozy, I feel quite faint with relief for you!

How could that have been better? Right down to the bargain dog ornament!! LOL.

Phew! There must be a name for 'Post appointment Rellief' or something! And it's associated symptoms - like increased coinsumption of celbratory wine!

Sleep well tonight - and thanks for reporting back

Thanks Blu

PAR? Now I like that

I might be doing a bit of that tomorrow with a nice glass of something. No doubt I would have done it tonight, but no alchohol in the house, not even liquers!!

I will sleep well, thank you

I'd like to second what Blu said, great news! Well done, Macwoozy's ds

I'm loving PAR

Glad it went well Macwoozy - both with the results and the understanding staff. It makes a massive difference.

Stick that worry back in it's box now 'til next time.

Thanks Saggar. Yeh it's firmly shut away......for now.