It’s been four months since the paediatrician uttered the words Ehlers Danlos Syndrome in relation to my 6 yr old little boy, and since then, I’ve read and researched what I can. I’ve seen the genetic counsellor and this afternoon we have our appointment with the geneticist where a diagnosis, I presume, will be final.
Four months of wondering and worrying and looking oddly at my little boy wondering if he looks like an alien! Holding on to that one sentence the counsellor said when she saw a photograph of him and saying that his eyes are quite wide set and gripping onto the worst case scenarios as only we of the human race can. Seeing veins in his chest and wondering if they are visible because of this awful syndrome or just because he is generally the thinnest child that I have ever seen.
He is my world (him and my daughter who is older and not flexible in the slightest) I feel as though I am waiting for a life sentence to be handed to me, in waiting for this professionals, professional medical opinion on my little boy. This person who will verbally hand down a sentence, whatever that may be. I can’t settle my mind, I can’t concentrate on one thing. A little over an hour before we leave the house and I feel like a highly strung spring about to be released into who knows what.
I know that knowing will be a better state. I will have to deal then, rather than let my imagination loose. I can deal in facts and be able to “do” things, whatever those things are.
Two hours until there’s no way out, the diagnosis will stand. Two hours.
We just found out last November that our 18 year old son has EDS. I have been trying to figure out for years why he was having so many health issues. Believe me, once you get the diagnose it will be a blessing because now you will know for sure. My sons doctors now will listen when I tell them how much pain he is in and they try to help instead of just ignoring us.
I'm glad that you managed to get a diagnosis. It doesn't seem to be an easy thing to do and it appears a very misunderstood disorder. It's also good that your son's doctor is on board with it all. It's not easy when it's our children is it. Had he had health issues for a long period of time? What type are you living with?