new(ish) Marfan drug

[jolo]

Hi there ladies, hope you all had a relaxing Easter
my DH and twin boys have Marfan Syndrome, and the specialist we see is talking about starting them on Losartan when they are about 5 (they are 3.5 now). In the trials on mice apparently it kept aorta healthy and stopped what she called the "overgrowth". DH really is very tall and has had 3 lots of heart surgey so this is great except it's quite a new drug and I think not all clinicians are prescribing it for kids.

Just wondering whether anyone out there is in a similar boat and fancied chewing it over.

alibhe, I hope that you get some answers when you see the geneticist.

I hope you'll come back and let us know how you get on?

Hi deepbreath,
Just to let you know my story with geneticist. He agrees that my dd almost certainly has Marfan's because she already has some aortic dilation (1.8? Can anyone advise me if that is serious in a baby under 1?). So that taken with her appearance clinches the diagnosis. Her heart will be monitored regularly.
Also he told me that since we have no family history of marfan's the chances of finding it on a genetic test in our case are about 60% only, but he will arrange for this test. It takes 9 months to get the result back!!
Also, to come back to the OP, geneticist too mentioned Losartan and the fantastic results they were seeing with it. Apparantly some subjects have actually seen a reduction in aorta size. So I'm not feeling too negative right now
Thanks again all,
ailbhe

Hi all,
I have been given the very worst news. My DD has just been diagnosed with neonatal Marfan's syndrome, which apparently is a very severe form of the disease. Her heart has deteriorated significantly already, and she will probably have a very short lifespan (less than 2 years)
My questions are:

1. Has anyone ever had experience of this form of Marfan's, who would be willing to talk about it?
2. Could anyone give me a name of a consultant with a special interest in this area?

Thanks for any help. We are just devastated. ailbhe

I'm so sorry to hear your news, and I'm sorry that I didn't see your previous message. My husband has been in hospital for a marfan related problem, and I haven't been online as much.

Please contact the Marfan Association, as they will be able to put you in touch with specialists and people that you can talk to about this.

I have posted another link above to the Marfan Friends World group, as I'm sure that there are archived messages on there about neonatal marfan syndrome. This is a less formal group, but the people on there have a lot of experience with marfans, so don't let that put you off.

There is a chat night every Wednesday at 9pm on here too.

I couldn't find any information about aortic root dilation in very young children, any charts that I found were for adults. I remember how worrying it was when they said my dd's was starting to dilate.

Please let me know if there's anything that I can help you with.

ailbhe - sorry to hear the news about your dd I hope you can find a consultant who can offer more hope.

Ailbhe, I hope that you and your family are coping.

I found this about a Marfan specialist in the UK, her name is Dr Anne Child.

Hi deepbreath,
Thanks for your advice. By coincidence I have already talked to this specialist last week on the phone - she was very kind and sent me on some articles in the post.
The situation does look hopeless but DD seems very energetic and happy for the moment so I'm trying to keep positive.
Dr Child said that the genetic test is v. important in determining which form of marfan's DD has, haven't got that result back yet so am still hoping for a miracle.
Thanks again for your interest
ailbhe

Hi ailbhe
I'm so sorry to hear your news.
I'm sorry I have only just been back on line and seen your post.
My thoughts are with you.