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Mitral Valve Prolapse In 8 Year Old Son....help Please

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Hi all

There is Ehlers Danlos syndrome in our family, including myself and my son has Benign joint hypermobility syndrome.

Today he went for an echo and I was told he may have MVP. The valve was not meeting up properly with the other one and was letting some blood back into the chamber (not quite understanding this by the way)think they said regurgitation.

I was told it was related to BJHMS. The results are being sent off to St Thomas's for verification by the Consultant there.

Can anyone explain to me what this all means.

I was told that is why my son gets chest pains and fatigues easily, getting breathless. They said he will need yearly checks.

They also said that his autonomic system is not working properly and this can cause him to go blue. I have AN dysfunction too so I understand that part.

Could MPV cause headaches? He seems to give up really easily when it comes to energetic things too.

I am really worried.

Thanks, Lou

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Hi Tinks,

I also have MVP (I'm almost 28), was recently diagnosed. Neuro said to me that it might be because I'm very skinny (it seems to be more often with skinny people). They do blame MVP for a lot of things - fatigue, headaches and other.. For now, he "only" needs to be careful about his energy reserves, use them wisely and go for checkups every year or whatever your doctor said to you. I hope that regurgitation isn't too big - you didn't say anything about it, but since docs didn't give him something for that, it may not be such a big problem. Some children grow over it. And one more thing - it seems that it might have something to do with low blood volume (and perhaps low blood pressure) - make sure that he drinks enough of fluid (under that I don't count juices, soup or other, just plain water besides all other he daily drinks). For me that's two liters a day, I'm not sure about child of his age.. How much of salt does he daily intake? It helps retain water, you could try to salt food just a tiny bit more, to see will it help. Don't overdo it, it might have contra effects on his blood pressure.

Ofc, I'm not a doctor, but I hope that this helps...

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Hi Enko and thanks for the reply.

Littlelegs drinks lots of water - his fave drink so we are covered there. My son is very thin and very tall.

I don't know how big the regurgitation is Enko (does it make a difference then?),I know there were blue flashes on the echo where the red was and this is the blood going back into the chamber, the doc said. She said the valves do not meet together like they should do. She said it will not improve, it will either get worse or remain the same - I hope it is the latter.He seems very young for this though? The scan is going off to the London Hosp to be checked over

- why would they do this if they can see it on the scan there and then - why verify in London Hospital.

I am not sure what is low BP in 8 (well nearly 9) year old but his was 90/64 - they didn't say anything about that.

When you say about energy reserves, do you mean take it easy? He has never been the most active of children as he tires easily. He used to cry as a toddler if he ran back then - but then he has autism too so....

What symptoms do you get if you dont mind me asking!Are you fit and well despite it?

And one last thing, is this serious or nothing to worry about? Thanks for your help Enko :)

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Hi Tinks :)

It's not enough to drink a lot of water, you need to retain it. Try with extra salting. My neuro told me to take a tip of a teaspoon of salt and mix it in yogurt, it would be easier to take it. I think that there are more people here that could be more helpful with salting thing.

Tin and tall people may also have low blood pressure too. I'm not sure which values are correct for children, but for a grown up the values you've wrote would be low. Try to check it few times a day (morning, afternoon, evening).

If regurgitation is mild they probably wouldn't give him any meds. If it's something larger, they probably would give him something to help stabilize it. They are sending it to London probably to verify it, don't know.

As a kid I was very active - training all kinds of sports, but then I've started gasping for air (practically choking), having palpitations and tahycardia and feeling really weak. Some time after I started getting presyncope (almost fainting), elevated body temperature for no reason, nausea, feeling weak, headaches.. For years I'm trying to sort that out with my doctors, but it's not working so far :( In the background there probably is some kind of ANS dysfunction, one neuro told me that, but won't write anything officially until I'll have brain MR.

With my remark about energy saving I meant that he shouldn't do something that would exhaust him too much (I get tired very quickly too), but he can't be totally passive either. Walks or some mild exercise would help him strength his muscles and feel better.

Don't worry that much, a lot of people live "normally" with MVP. You just need to do regular checkups. I hope that everything will went well.

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Hi Enko,

thanks for detailed replies!

Not sure if I will give him any salt extra in his diet as he is only 8. I have read a few bits on MVP and just as you say, it will be kept an eye on - when it is your child, it is such a worry but I feel better now. Just waiting for report back from the local and London hospital to see what they have to say.

Thanks again Enko ;)

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