My Poor Son

Let me start by saying i dont have Marfan Syndrome but my Son does.We have no family history with him it just came out of no where and im so scared for him. My Son James is eleven and whilst he always looked different from other kids i didnt know why. James is 165cm tall and only 38kg in weight he runs out of breath very quickly and has most of the other symptoms relating to Marfans. We only found out a month a go just before Christmas and all i wont to know is that he will be ok I DONT WANT MY SON TO DIE  I only found out yesterday that james scoliosis is so severe that he will need surgery if anybody out there has been through this and has advice for him please post them in the comments section. I would also like to say that i do understand that marfans isnt a death sentance but the thought of hes aorta ruptoring is more than i can bear to think about.

gypsymae gypsymae
31-35, F
10 Responses Jan 16, 2010

98% of the cure is belief. Everything will be ok. <br />
Try this on for size. 98% of the cure is knowing everything will be ok.<br />
Who much does changing the word believe and removing the period do?<br />
In belief it still has room for doubt and still bears the burden of proof. Knowing is absolute.<br />
Which do you prefer.<br />
It was nice to see some one who was not ******* on the facts for a pleasant change.<br />
Little princess got the closest of all. I know I sound harsh however, when you add the fact that Thoughts Become Things that changes the equation quite a bit. Know you and he will be fine and so be it. Thinking in the negative gives you more negative.<br />
<br />
Thoughts on what you want instead of what you don't want is always the better choice. Unless you want what you don't want and then you will get more of that which you think on with the emotion I know you have for this subject of your son. Spend your emotions on your desires and not focus on unwanted desires.<br />
Just a thought.

There is a support group for people with diseases such as this and their families, ButYouDon', you might find information that can help you there.

little princess i asked the question about faith and god i think last week but the answers really didnt speak to me you have tonight and you are right. To help my son i need to believe that he is going to be ok and stop being so negative thank you

thank you brieks i will keep you posted

O wow. I tend to trust chiropractors over doctors, so yeah, I'd go with that too. I sure hope the surgery goes well!

hi brieks 07 yeah it was a chiropractor who first told us he would need surgery the chiro did the x ray and my sons back looks like an s we have his hospital appointment on fri so will find out when he goes for surgery

I don't know anything about Marfan Syndrome, but I do know a little bit about scoliosis. I have that. I don't know how bad your son's is---obviously pretty bad if doctors say he needs surgery. I was told I'd have to wear a back brace. I just couldn't help but wonder if you have talked to a chiropractor about your son's scoliosis. I still have it, but a good chiropractor helps.

you poor women i have never been through this so cant imagine how hard it would be please remember that you need to stay strong for hes sake and im sure you both will come out of it stronger then before i wish you love luck and happiness

I agree with micario, marfan syndrome isnt a death sentence, remember good things can come out of a bad situation

Hi gypsymae<br />
<br />
It's obvious how worried you are for your son right now, but I want you to know that a diagnosis of Marfan syndrome isn't always a life sentence of pain and misery followed by early death.<br />
<br />
The thing with Marfan Syndrome is that there is a spectrum on which we sit. I am very lucky as I am diagnosed with M.S but am at the lower end of this spectrum. So while I am tall and thin with a heart problem that may need surgery, otherwise I am ok and lead a perfectly normal life. I am 45 years old now and have a beautiful 6 year old daughter who thank God isn't carrying the Marfan Gene.<br />
<br />
I don't know which country you're in ( I'm in UK) but you need to get your son to a Consultant in Clinical Genetics for a comprehensive diagnosis. The Doctor will refer to a system called the Ghent criteria which will establish where on the spectrum of Marfan Syndrome your son is. Maybe that has already happened. Specialist medical input is absolutely essential.<br />
<br />
If your son has M.S he will also need to see a Cardiologist because the biggest cause of early death is a ruptured Aorta on account of the fact the connective tissue in our hearts is not as strong and robust as it should be and is more likely to tear. I have this symptom of M.S but my heart is regularly monitored and if my aortic root reaches a dangerous level of "dilation" there is a surgical procedure that can prevent the Aorta from rupturing. If your son has this symptom he should stop playing any physical contact sports immediately and try and avoid impact to his chest and also he shouldn't do weight training or heavy lifting of any kind. That could be dangerous. However, obviously it's for your Doctor(s) to advise authoritively on these things.<br />
<br />
As I said I am really lucky not to have some of the worst symptoms of Marfan Syndrome and apart from the fact I am tall and gangly and avoid sport I am otherwise ok and hope to live for many more years yet ! <br />
<br />
I wish you and James all the very best.