1: What were Noah’s symptoms?
This is a very common question and yet one that is not easily answered. The pancreas doesn’t shut down from one day to the next. Instead it keeps on fighting and trying to do it’s job. This makes spotting symptoms incredibly hard for parents as the pancreas sometimes works then slows a bit, then picks up again before repeating the cycle. Rather like the Welsh valleys as they rise and fall, so do the symptoms. For a couple of weeks your child is not his usual self and then for a couple of weeks he is. Trying to nail down what your concerns are and why you are having them is not easy.
In our case I recall that eight months before Noah was diagnosed (he was two and half years old at this point) I was having concerns about his immune system and I spoke to his GP about it. It is very hard to articulate yourself when all you can really tell the doctor is “something is wrong with my son but I don’t know what and I can’t tell you why I think this”. I was advised to wait and see how he was in a few months (it was winter and kids are often sick during this time).
By the time we reached summer my concerns were only getting worse. Noah was losing weight and refusing to walk or climb stairs any more. He didn’t want to play outside with other children, he only wanted to sit indoors and play quietly. He started sleeping longer during his day nap (from one to sometimes three hours long). He stopped wanting to toilet train at day care and his carer diligently noticed all the above signs. He started getting black circles under his eyes, he looked exhausted. He lost his playful, fun-loving character and instead became clingy and insecure. And then the big symptoms came – he wanted to drink LOTS of water, especially before he went to sleep and he was wetting himself (despite using nappies).
We took Noah back to his GP and they did a urine test. When Noah was a newborn he had suffered from bladder and kidney infections. The GP informed us he had another urine infection and we should make an appointment with his pediatrician at the hospital. He prescribed more antibiotics.
Two weeks later we were told by his pediatrician that there was no urine infection and they could see nothing wrong with him. We described his symptoms again but still they couldn’t tell us what they meant. They took another urine sample and we were advised to spend the next two weeks trying to get Noah to put some weight on, to feed him with whatever he wanted to eat and if it didn’t work to come back in a fortnight for more tests.
The following three days Noah deteriorated a lot. He had no energy, he looked miserable and he kept wetting himself all the time.
On the fourth day, Monday 21st September 2015 the hospital called and asked us to bring him in immediately. The urine test had shown extremely high glucose levels. This was our D-Day – Diagnosis Day.
2) Is there a cure?
No. End of story.
3) Why does Noah have T1D (Type 1 Diabetes)?
The quick answer: who knows?
The longer answer is multifaceted. There is no T1D in our families (on both sides) so there was no obvious link there. Recent research is starting to suggest that infants who are exposed to strong antibiotics are potentially at higher risk of immune deficiency diseases like T1D. Noah was 6 weeks old when he had a urine, kidney and blood infection. He spent a week in hospital and received antibiotics – maybe this is why…but actually we don’t know for sure.
What is certain is, as parents, we did nothing wrong. Noah did nothing wrong. You cannot get T1D by eating the wrong foods. T1D is not contagious. Sometimes life just chucks a pile of crap your way and it’s your choice whether you sink or swim.