As most of you will know in September 2017 our then 2 year old daughter was taken ill and diagnosed with Type 1 Diabetes.
I don’t really write about her condition as it wasn’t why I started Mammaprada and it’s still very raw. However given that today is World Diabetes Day and maybe in the hopes of raising awareness especially about Type 1. I thought I’d share how we are getting on.
Technology! Love it or hate it, technology is has been a life changer for us.
Our daughter has a Dexcom G6 CGM (Continuous Glucose Monitor). This is a device which is inserted onto her arm via a needle every ten days. Then via bluetooth it sends her blood glucose level to my phone EVERY 5 mins. This may not seem a big deal but basically it means I don’t have to finger prick her. So that needle once in ten days, saves 7 finger pricks a day! Which when you’re 3 can really mess up your little fingers!
It also has alarms so that if her level is falling to what may be a dangerous level it will sound an alarm day and night. This means we don’t have to test her at night anymore, saving all of us a bit of rest. Night hypos/lows in small children are common and often missed. Sometimes resulting in fatal consequences or brain damage. So as you can imagine this is a huge relief to know we shouldn’t miss one.
It does mean if the alarm goes off in the night I have to try and feed her or get her to drink some juice. There are weeks where this happens more often and I’m often in a sleep deprived haze on the school run. But the main thing is she was safe because we had the alarm.
Having a CGM also means she has started pre-school and everyone knows what her level is all the time. This gives me peace of mind that an issue won’t be missed. She absolutely loves it and can’t wait to go each day.
The downside is the staff find it incredibly stressful and a great responsibility knowing that she needs this extra attention. I’ve trained 5 members of staff in the past month, arranged for nurses to come in and check my training on my daughter is correct. Then I had to give proof to SEND officers that I’m not ‘making up’ my child’s condition. As apparently some people do this.
I’ve also found describing the worst case scenario of what could happen to your child quite heart breaking. I think I sobbed for most of September!
We’re now, I think, settled into a new routine. Everyone seems to know what to do. It’s a big learning curve for all of us. Sometimes I wish I could do the school run without wondering if the walk will make her low before pre-school. I know that then if I leave her there when her level is low they will be on high alert.
There are so many more decisions like this I have to make every day and sometimes it is very draining.
How is she coping?
As usual pretty amazingly! She still has multiple daily injections. She has to have one with each meal or high carb snack and another once a day which gives a 24hr slow release of insulin. Some days she is sick of it, others she just chooses a leg or arm and barely notices me administering it.
She reads her level on my phone and if the alarm goes off and she’s in another room she will come and tell me what it says. She knows that when it’s 4 or below she’s ‘Low’.
I can’t really believe how much she understands about her condition already. I wish she didn’t have to, it makes me both sad and proud. It’s much better that it’s natural to her now so she finds it easier to process when she’s older. I’ve been told she will know no different and this will help later on.
Sometimes we are guilty of thinking she is not aware she’s different. She is very aware she just doesn’t show it. She told me this week she wishes she could have a break of her CGM but with the phone still showing her level so she didn’t have to have finger pricks either. Then she sighed and said “But that is just not going to happen”. She also likes to hide the CGM now and again and if it doesn’t show under her t-shirt sleeve she’s visibly pleased. So it does bother her.
What stops her?
So far, nothing! In fact only other people’s perceptions have changed what she can do in the last year. We’ve been on planes, to a heatwave all Summer in Italy (Heat causes lots of lows). She does P.E. each week, playdates and ate sweets trick or treating at Halloween.
She is thankfully doing everything any other child is doing at her age and is a very happy, incredibly feisty, stubborn little 3 year old!
Her brother is devastated about her condition. He asked if he could take it off her, and have it himself. She told him that he was very nice but unfortunately it can’t happen! He is a real hero with her, distracts her when she’s having her CGM replaced or during injections. He checks her phone to see her level. He’s starting to understand what food she needs in which situation.
They fight like all siblings but are also especially close. There’s a lot of love between them that comes from overcoming something pretty horrid. Sometimes my son writes us notes about how he feels about it. Or when she’s in bed he needs to shed a few tears about it, just as we do!
Keep on carrying on!
So how do you keep going? There are bad days of course. Even bad weeks! But there are plenty where this life is just normal to us now. I know what I have to carry, which snacks, juice and other items and it’s now our normal.
There are many other children with much worse conditions and we are very lucky that this is not us. A 20 year old Type 1 Diabetic once told me if you’re going to choose one life long condition, this is the best one! Clearly no one wants one! But we all have our own battles going on behind the scenes and they are all big to each of us.
My main message on World Diabetes Day would be know more about it! We have no history of Diabetes Type 1 or 2 in our family. No history of auto immune conditions. Type 1 is not related to diet or lifestyle. Your pancreas literally stops producing insulin after a trigger takes place.
My daughter’s trigger was getting tonsillitis! Viral illnesses, even stomach bugs are common triggers of the disease so without meaning to scary people, know the symptoms!
Lastly, we knew very little about Diabetes. Very few people know anything factual about it. If you know someone with it, just ask questions. Don’t exclude someone or feel scared about broaching the subject.
You’ll find most people just want their child to be included in everything, however possible and are happy to talk!