My son was repeatedly mis-diagnosed over a period of several years (from age 3-9).
Approximately one year later (aged 10 in 2012) after moving house to a different health authority, my son was rushed into hospital severely dehydrated and in DKA – Diabetic keto-acidosis – a life-threatening complication of Type1 Diabetes that is wholly preventable if addressed quickly enough.
When my son got ill, I had not trusted my instinct as I had been repeatedly told it was not Diabetes.
I had been told that I was imagining his symptoms and that I was a hypochondriac mother. (Munchausens by proxy was strongly implied but not mentioned by name.) Our GP at the time told me not to come back, and that if I did they would have to deal with me!
This mistreatment devastated my confidence, and nearly cost my son his life.
It seems very unlikely indeed that I ‘imagined’ Diabetes and then he got it.
But a mother’s instinct was completely mocked and discounted.
He only just made it through the night after diagnosis, but thankfully he made it through and recovered after a week in hospital.
I now strongly believe that my son’s Type1 developed slowly along the lines of LADA (LADA stands for Latent Auto-immune Diabetes in Adults, which is Slow Onset of Type1 Diabetes – atypical for children, I know, but not unheard of) and I now know that, although initial urine tests seemed to be negative, a blood test would have detected antibodies years before the full-blown disease manifested itself. Blood sugar could have been tested. Neither blood tests were done.
Far too many children are ending up in DKA after missed diagnosis or misdiagnosis of Type1 Diabetes. Far too many children are dying because DKA is missed and left untreated.
Here is a reminder of the typical ‘Four T’ symptoms of Type1 Diabetes:
• Toilet – needing to go to the toilet much more often
• Thinner – unexplained weight loss
• Tiredness – unusual tiredness
• Thirst – excessive thirst
And a couple of atypical symptoms:
• Tummy – stomach-ache after eating
• Thickened skin – this is an atypical symptom which I noticed only because my son’s skin was rougher than his siblings, but both of these symptoms have been mentioned by other families of children with Type1.
We only had two of the typical symptoms – toilet and thirst, so don’t wait until you see all the symptoms to act.
Above all, trust your instincts, educate yourself, and if you suspect Diabetes don’t allow yourself to be fobbed off by arrogant and uncaring doctors. Know your rights. Get a second opinion if necessary, and don’t stop fighting until you know your child is safe.