I'm considering sending the x-rays to the USA to be looked at - am I losing the plot here?

[emkana]

In Columbus, Ohio there's a hospital which specializes in operating on children with severe Jeune's syndrome. So they have seen lots of children with the condition.
I've been in e/mail contact and they're willing to look at the x-rays.
Am I taking things too far here?

I don't think so, em.

Whatever it takes to help you get a firm dx /peace of mind. So you can begin to prep for how to cope with any dx'd condition long term.

Good luck with it. x

No not at all. Do it.
I would.

No your not losing your mind. You are doing the best for your child so you can collect all the information you need so you can plan ahead and know what will be needed in the future.

Seems the best course of action to me.

I think I'd do it, Em. Though thats not necessarily a recommendation. xxx

How is Sebastian emkana? It can't hurt to let them look at the x-rays. Otherwise you'll just be thinking, and thinking about it instead of enjoying your baby.

I would do it like a shot, I really would, even though I actually agree with Californiafrau's wise words. The only thing you have to ask yourself is what if they say he has it- you know how incredibly variable it can be, and they are really, really unlikely to be able to tell you what the prognosis is from the X rays (from what I've read it isn't clear how the condition relates to thorax size). Will you want the operation? The thing is that if they look at the X rays and say no it's definitely not, that would be such a relief, wouldn't it.....

That's it tamum, it would be such a relief, even though I have serious doubts that he doesn't have it. I would hope for them to say yes, he has it, but it's one of the milder cases, while at the same time appreciating that a prognosis is very, very difficult.
Of course I'd let him have the operation if necessary.

I guess the only real problem is that you can't get proper counselling in the way you would if you were actually there, but as long as they are willing to "chat" by email then it shouldn't be such a problem. I feel the same as sobernow, I just wouldn't be able to resist.

I'd probably send them. Especially as they've agreed to look at them.

Is all this stopping you enjoying your son? I hope you're taking the time to just gaze at him adoringly sometimes rather than worrying all the time.

I would also want to do whatever I could. Even if they agree with your doctor's treatment options you will have the peace of mind of knowing that you have done everying that you can for your child.

do you think you will get a conclusive answer? Would it be possible to travel to the US and actually get them to see him? that way maybe you'd get a more definitive reply from them

Em - I think you have to send them for your own peace of mind. If you are anything like me you have a need to have all the available information. You have to know that you've explored every avenue.

emkana - we did this when dd2 was tiny - wrote to someone we read about in the New Scientist who'd come up with a revolutionary method of closing holes in the heart. V. nice man even took the time to write a very friendly reply. (Unfortunately his method wasn't suitable for babies at the time but at least we'd explored that option IYSWIM)
I think most people are only too happy to help, particularly when it's to do with a small child.

Californifrau has a very good point, but it's just so hard when it's your baby - it's just stark desperation really. I don't know how you can stop yourself from getting caught up in it (says she who nearly flew dd2 to Chicago for grommets!)

The US radiologist wrote to me that Jeune's has some distinctive features you can find on the x-rays. All the radiologists who have looked so far (there've been three) have said that there's something but they're not sure what. So I'm hoping that asking the US specialists will clarify whether the UK and German radiologists just didn't recognize the Jeune indicators for what they are, or whether there are no Jeune indicators, just indicators of a different skeletal dysplasia.
Does that make sense?

californifrau - I do appreciate your advice, but it's very very hard for me, the way I am, to rest when I know that there are other people out there who might be able to help me.

SD - I do enjoy him as much as all this and the fact that I have two dd's already allows me to. He does have the most gorgeous smile that makes my heart melt mind!!!

if they can't give you a certain answer now, how long will it be until it's clearer? With babies growing so fast, shouldn't you be able get a reasonable idea within a relatively short time frame?

Are you going to post another picture of him soon? He looks so gorgeous in the early ones, we need to see more of those smiles.

I would definitely do it. I have a slightly less extreme version of this problem in that some of my friends are doctors and have been helping me out behind the scenes with dh's various medical conditions, and it is difficult to say "well my friend - who incidentally is a consultant and you are not - say ... " but I do it anyway.

It's such a rare condition. If the expertise cannot be found in the UK or Europe, then what can you do but look elsewhere.

IN the search for help with ds1 I've used people in the USA (twice- once a SALT- which I thought was ridiculous- although I did end up attending a workshop of hers in the UK, and once some people who devise programmes- and I'm attending their UK workshop next month). I am currently consulting with someone in Australia over ds1- and tbh she has provided some of the best help we have had in 5 years, since I first started looking for things.

If you can get a proper service via email/phone etc then go for it. Don't play lots of money for something unsatisfactory though.