Additional Needs

When Even the Specialists Don’t Know

Posted by Carolyn Voisey on 19th May 2017 Additional Needs, Advice & Support, Disabilities

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Most days Sam’s status as a child who is undiagnosed just doesn’t bother me.

After all, he’s a happy little chap and we know how to help manage the seizures and other manifestations of his condition.

We decided long ago that we wouldn’t put the little dude through any more tests unless it was to find a better treatment/therapy plan for him.

It’s a choice we have never regretted – he has enough labels already, and we’d rather enjoy our time with him than be constantly searching for, "The Answer."

But recently, that undiagnosed bit is a massive pain in the butt, because we’re never quite sure if x, y or z is just one of those things or if it’s a sign of something we should be more concerned about.

Take his chest for example. All small children get colds.

Many get chest infections and pretty much every under-10 year old I know currently has a snotty nose together with coughing and sneezing. It’s the end of term, they are utterly shattered.

But for Sam, it’s never quite that simple. At New Year he was rushed to hospital with a chest infection … a month or so later and we were back with the same worries about his chest.

It looks like his right lung isn’t inflating properly, however the X-rays are clear(ish).

He has us and the doctors baffled, yet again.

There is no doubt that his SATs are fine, however as a Doctor commented, something is definitely going on…. But what?

Because we don’t know enough about what’s going on with the little man this now means a referral to a respiratory consultant, a second look at what meds he’s on and whether he’s allergic to something or if he’s aspirating.

We don’t know if changes on his x-ray show damage from the illness at New Year or if it’s damage from when he was tiny and so desperately ill with pneumonia.

It’s exhausting, emotionally, because every time he gets a cold I find myself watching him like a hawk and praying that he manages to recover and that we don’t end up back in hospital.

I’m sure that eventually I’ll relax again, but the not-knowing is proving to be rather trying presently.