Tuesday, 12 October 2010

Update on Sons Health

It's been a while since I updated the blog on the progression of the investigation into my sons health, so I thought I would do a quick update this evening. 

We did see the head Ehlers Danlos consultant, several weeks ago and she didn't think he quite fitted into the EDS category just now. He is hypermobile, but he could be more hypermobile then "normal" people or a little hypermobile. She just didn't want to call it. 

She mentioned his chest wall shape isn't right, but didn't elaborate. She didn't know what the leaking capillaries were about, so said she will see him again in a year.

A few weeks later, I received a letter from her, where she informed me she had attended a conference where she had spoke with a German Doctor researching children with capiliritis type issues and asked permission to discuss my son directly with him, to see if this can help in a diagnosis for him. I returned contact informing her it was definitely ok.

We then went to a follow up appointment last week, with the head paediatrician consultant who original diagnosed Ehlers Danlos. He took on board what the specialist had said, but when I asked if it could be a different connective tissue disorder and mentioned his chest shape, he really didn't know. He's now keeping an eye on him six monthly, to see if there are any progression of symptoms or new arrival symptoms. 

I'm hoping the German Doctor has something to offer, as seeing my little boy bleed into his skin on his torso regularly, really doesn't feel right for me, in fact it just make me anxious. 

I am a lot calmer than I was before, though. I'm no longer climbing the walls. My son is generally healthy within his day to day life, so I will take this in my stride, even if I am watching him like a hawk!. 


  1. I read your blog profile and it movd me, I just had to follow! I found you over at Talli's blog and plan on sticking around!

    Seems like you're working towards a lot of things, but working to help with a possible cure for a syndrome is amazing. I don't know much about Ehlers Danlos but I plan to google and find out more. It's inspiring!

    What do you enjoy writing? I'm a YA fantasy writer and curious to know more about you! Feel free to stop by my neck of the woods to say hi! I'll be stopping by in the future!

  2. Thank you for your really kind comments Jen! Sorry I only just saw this comment. I think I'm going to have to see if there is a way to get myself emailed when comments are left. (I'm still finding my way around the blog :) )

    The novel I'm hoping to write and is a few chapters in, is a crime thriller. It's what I enjoy reading. My short stories are anything that comes to mind to be honest. I've only just started writing so need a lot of practice and no doubt rejection letters!

    I've been to your blog and am one of your new stalker ;)

    Again, thank you for your comments, as you know, it's lovely to hear someone is actually reading my ramblings!