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!.