No Diagnosis

You know we focus on Mitchell not having a diagnosis. You are probably thinking, “Get over this already! It’s not that easy. A pediatric neurologist fellow shed some light on why this remains such a frustration for us. We asked him whether he agrees with what we’ve been told – that 30-50% of kids have no diagnosis. We said we are perplexed by this because after seen numerous therapists and connecting in person and online with parents, it seems that most developmentally challenged children have some sort of diagnosis. Mitchell seems rare. The fellow agreed with the percentage, but added even if a child doesn’t have an exact diagnosis, generally the child falls under a type of disorder. For example, docs may know a child has a mitochondrial syndrome, but not know exactly which specific type. They may know there is a chromosome deletion on a certain arm, but not know the specific gene affected. You can see how even a generality would help give parents direction and expectations.

So, I asked this neurological fellow. Does Mitchell look like a kid that has a mito or metabolic issue? (Tests have already said he doesn’t.) He said no. Next…does Mitchell look like he has CP? Again, no. No surprise.

I’m wondering what the percentage of kids who have absolutely no umbrella diagnosis, like us. Gosh it has to be small. Syndromes Without A Name (SWAN USA) is the only group we’ve seen to offer support to this group. Here’s a video that highlights some of the children across the country that like Mitchell are undiagnosed.