all my girls are being seen tomorrow at paediatric cardiology

[FairyTaleOfNewYork]

nonononononononoooooooooo

please lots of good good wishes and vibes etc.

i think the murmurs could disapear but not the leak. as long as she isnt showing signs of worsening, (ie extreme tiredness, shortness of breath) then no need to worry.

oke doke

That's good news, Fairytale... Glad it went well. Though sorry to hear about dd1's leak. I hope it's not something that will give her any problems. But at least you know about it now, so know what to look out for.

Thinking of you all....

thank you!!!

am doing a mildly relieved little dance. its fantastic news, really it is, the leak is nothing in the grand scheme of things, never knew it was there, doesnt cause any problems and doesnt require any treatment. so i can ignore it. well for 4 years anyway lol.

Misdee many people have leaky mitral valve (me included)and live long happy lives It is really quite common.Does the fact that your daughter has some cardiac signs mean that Peters condition may be genetic and not the result of a virus?It is a minefield!

as far as the cardiologist is concerned, no link. but having DCM doesnt mean you have a leaky mitral valve, yet peter has one as well. the two dont go hand in hand. we dont know if peter has always had it or whether its because of the leaky valve it caused that endocarditis type thing, and qweaken his heart enouigh to get the virus in. does that make sense? its just something we will never know. he has one brother who had a large hole in the heart when youngerm but helaedn up rather miraculously when he was about 7, and another brother with a murmur.

i have a leaky mitral valve too. My consultant told me in 1990 (when it was diagnosed) that about 10% of women have this problem - more a prob for women than men IIRC. Usually they present with symptoms during early 20s and it usually afflicts those with narrow chest cavities. Ive been discharged from hospital since July 1993 when dd was 4 months old - its never caused me a prob but I do take anti-biotics at births or dental work. Also I cant drink caffeine without going funny other than that its all ok

i thought it may bne the anti biotics thing for dental work. will just let the dentist know on our next visit.

I know they are not linked as I don't have dcm but do have hocm.I was just thinking about cardiac conditions in general.You do need anti biotics before any invasive procedure and I agree too much coffee sugar or alcohol really affects it.So happy they are all clear of dcm

The antibiotics for dental work is because any dentaltreatment that causes bleeding can allow bacteria into the lood stream. This in turn can head to the damaged valve and cause bacterial endocarditis. Basically the bacteria colonise on the damaged valve and can damage it further.

AND NOW FOR THE ENGLISH VERSION

The antibiotics for dental work is because any dental treatment that causes bleeding can allow bacteria into the blood stream. This bacteria in turn can head to the damaged valve and cause bacterial endocarditis. Basically the bacteria colonise on the damaged valve and can damage it further.

Glad you had some good news today

That's such good news misdee. It does make you wonder about Peter prior to his illness though doesn't it? That he had a mitral leak and it left him open to the endo? Knowledge is power though and you can take all precautions for dd1.

Re the antib's. ComeoVeneer - it's been mooted about that changing hasn't it? Ant-b's only being needed for certain cases. I saw a paper about it in the Spring - caused a bit of a panic in the Congenital Heart disease community I can tell you.

How did you get on Noddy - everything OK I hope?

Yes there is a debate about wether itis realy necessary. If you think about it scratching your mouth with crusty bread or over zealous brushing resulting in bleeding therefore has the same risk. It is extremely rare.

really does make me wonder about peter being more suspectable to the coxsackie B virus if he had a leaking valve before. at least i know what precautions to take with dd1 and what signs to watch for.

its liek a great big weight has gone, and now my nails can grow lol.

Glad you've had that big weight lifted off your shoulders!

One of the little ones on Heartline who's been transplanted had DCM through coxsackie virus.

Endocarditis is rare but devastating . Very scary disease. Dd has had braces now for 3 months and I'm watching her like a hawk. Completely paranoid but her having had a miraculous recovery from DCM I can't help it.

My kidney function is near perfect but my heart remains unchanged.But that is better than it getting worse!I am absolutely exhausted though as i rarely sleep before these things.I also have terrible bone density now and should 'expect'fractures

Good news then noddy. Odd when the words 'No change' bring a smile isn't it?

Releived for you misdee

Glad the weight has been lifted misdee

Just seen this Misdee. Thank heavens your dd's are showing no signs of DCM, what a relief You must have been a nag of nerves. Will they need to be checked again at a later date?

Oh excellent news....I told you so

Whats DCM? and whats the difference between endocarditis and cardiomyopathy?

Great to hear they are OK .

As for the murmurs and leaky valve, well, they may never cause a problem. I have one, and apart from the antibiotics before visiting the dentist, nothing else to worry about.

(which reminds me my 4 year check up was due 3 years ago )