Tracy Assari speaks from the heart about her daughter's Type 1 and how the new NICE guideline, tightening the blood glucose target, will impact on their familyTracy Assari speaks from the heart about her daughter's Type 1 and how the new NICE guideline, tightening the blood glucose target, will impact on their family
"When Ariyana was diagnosed with Type 1 diabetes in 2012 aged 6, it was a huge shock for our family. We had no history, indeed, absolutely no idea of what it would entail at all.
"Overnight I became her nurse, and we left 24 hours later with a pharmacy of supplies, to a journey that would include good days, bad days, highs, lows, constant monitoring, insulin dosing, carb counting, adjusting and very little sleep. Ariyana took it on fine, brave solider that all our children are, though explaining that we were going to have this several times a day, every day, forever, is a moment neither of us will forget.
I didn't want it to become our life
"As parents we grieved, we denied, we accepted, and that is where we are today, with the support of our lovely team at Addenbrooke’s. Support is vital, and so I became involved in advocacy, becoming a parent rep for the East of England Paediatric Diabetes Network and on many social media groups. Life with Type 1 diabetes is tough. No argument! It may have changed our family’s life….but I didn’t want it to become our life. That’s no easy challenge for a condition that’s all-encompassing, 365-days-a-year, 24-7, changing minute by minute with zero let up. It’s exhausting, I know! And we still don’t get it right."But it’s what we do so our children lead as normal lives as possible, and to have a healthy long life at that. After a year and a half on MDI (multiple daily injection) , Ariyana now uses a Cellnovo insulin pump which has made life with Type 1 more bearable and I can micromanage doses as required without disturbing her at night.
"But even with all this hands-on management her HbA1c has never been close to 6.5% (48mmol/mol) or lower – the new benchmark now advised in the NICE guidelines.
Numbers change every few minutes
"How do we feel about this? Being told the new benchmark is one thing, but being told why is another. Research has shown us lower HbA1c means lower complications in later life. So yes I’m sold. Her life will be hard enough managing this condition all on her own as it is. But how are we going to get there? More testing, correcting? Meeting these targets on at least 5 tests a day – sorry I don’t think that’s possible. One thing Type 1 diabetes has taught me is that it’s an ever changing, day-by-day thing. Numbers change every few minutes. I have a growing child and there are just too many variables in the equation!
"I do worry about her when she’s away from me…what if she went low and no one was there, what if she passed out in the toilet, what if she went into a coma and died? We all think it. I still check she’s breathing in the night and first thing. Lowering targets will undoubtedly mean increased hypoglycaemia. More worry for families, more feeling rubbish for our children. "I’d rather feel high mummy". Ariyana hates feeling low."I’ll be honest, I get up and night test, and you know what - most of the time she is high and needs insulin. A few times I have caught lows too, 2.7, 1.9 even….so I get her to sip GlucoJuice as she sleeps. How long had she been low for, are the highs rebounds form lows… I don’t know. It’s 3am and she is 4.0 – now is she rising or falling?
We've invested in a CGM
"A few months ago I couldn’t tell you but now we’ve invested in a CGM (continuous glucose monitor) we can see this. So whereas before I may have given her something to keep her a bit higher…. now I’ll just test again and see rather than risk sending her high. Without this tool would I risk that? Probably not. Ariyana’s pump settings are now changed to 4.0 - 7.1 and we aim to correct anything over this, within reason, accounting for circumstances at the time.
"It WILL be hard to meet these targets. Almost three years in and I still haven’t cracked dose adjustments and postprandial highs. Things are heading in the right direction but our families need more support, more help, education, individualised care and more funded technology which doesn’t seem to have come with this new lower HbA1c. Every day’s a roller-coaster ride. We can only do our best!"