I’ve taken part in many of the weekly (Wednesday night at 9pm) #GBDOC tweet chats since they started a couple of years ago, I enjoy them and generally get a lot out of them. A couple of weeks ago I got a message from Paul (@t1hba1c) who hosts the #GBDOC tweetchats who asked whether I’d like to host a tweetchat about bring up children with diabetes. I was initially reluctant: why would anyone want to listen to or answer my questions; there’s many more parents who with their eloquence could host a great tweetchat.
After a couple of messages between Paul and me I decided to do it and then proceeded to panic about what to ask. The easy solution was to ask other parents what they’d like to know so these questions are not just mine, they’re from a mixture of parents.
For the chat I’ll be using the following abbreviations:
PWD – Person With type 1 Diabetes
CWD – Child(ren) With type 1 Diabetes
PofCWD – Parent(s) of a CWD
Dx – diagnosis of type 1 diabetes
CGM – Continuous Glucose Monitoring, such as the Dexcom G4 Amy uses, gives a constant, slightly delayed reading of a PWD/CWD’s glucose level.
CGM-in-the-Cloud/Nightscout – a system developed by PofCWD which allows parents to view their kid’s current glucose level whether they are, many use a Pebble watch or iPad to view their kid’s CGM data. More info here.
First a couple of questions about work & relationships, not at the same time mind…unless you’re working late 😉
Q1a Employment: has having diabetes affected your employment chances? Did you change your career path/dream because of it?
One of the first things parents are often told at diagnosis is that it won’t affect their child’s career unless they want to join the Armed Forces. As time goes on you hear that people haven’t been able to become pilots, or paramedics and the list seems to go on. Some kids already have thoughts of joining the Army etc., then they’re diagnosed and those dreams stop. Did you dreams stop?
Q1b: Are there any ‘good’ or ‘bad’ jobs? (Thinking along the lines of jobs where it’s really hard to test or take a break)
I’d never dream of steering Amy towards a certain career path because she has Type 1 Diabetes, she needs to choose her own path, but it seems to me that there must be certain jobs where testing glucose and taking the odd break for treatment is a lot easier than others.
Next up, one of the worries for parents is about their kids having a happy family life.
Q2 Relationships: has having diabetes been a factor in finding/losing a partner? Has it caused issues in your relationships?
On many of the parents’ Facebook groups many talk about how their marriage fell apart after their child was diagnosed, blaming the stress from prising apart already existing cracks. Some worry that their child might find it difficult finding their ideal partner, although I believe the truth will out and Amy will have no trouble finding that decent guy (or girl of course).
Moving on to positivity, about kids attitudes and fear and confidence.
Q3 Attitude: do parents instil confidence or fear in their CWDs with things like overnight checking, CGM, CGM-in-the-cloud?
I often wonder whether my own personal paranoia and control-freakishness is instilling fear in my daughter’s mind rather than what I really want – for her to be independent. My interest in her using CGM has led to us all to expect it to be there every day and I can’t help but wonder if this is sending out the right message. Back in the day parents didn’t have these options and all the PWD I know seem to have grown up pretty well and turned into to great adults.
Q4 Positive clinics: How should parents go about teaching our kids to question their HCP’s? What are the important points?
Our Consultant is great, she rarely talks to us parents but instead talks straight to Amy and all about the soft stuff too, no focus on HbA1c as such. Amy though rarely thinks of any questions for her sessions as she’s happy with her care. I want her to be able to question the HCPs, learn from them, teach them so does anyone have any tips of how to achieve this?
The next question is whether or not it’s right to restrict things due to worries about the future.
Q5 Care focus: should our focus be the current or the future? What do you wish your parents did or didn’t do? Any wind ups?
The current or the future: I seem to have two choices, either make life easier for Amy now and not worry too much about her day-to-day levels OR be very involved in Amy’s day-to-day management helping her with basal/bolus management & set changes etc.. I choose the latter which I know can wind Amy up, but I do this to help her future as much as I can, hoping to minimise complications as much as possible. But which approach is right?
Am I right to steer her away from, or make her wait for, a carb loaded snack when her blood glucose is already quite high? Should I let her eat anything her friends eat?
Or am I right to try and teach her to minimise the food spikes going too high?
I guess many PWDs either wished their parents did less or more during their childhood. Any experiences you’d like to share?
If we get time I’ll ask this one.
Q6 Letting go: what’s the best way/age/time to hand over care completely? Do PofCWD ever fully let go? Did yours?
I tell myself that I’m learning all I can about Type 1 to help Amy’s future and to stop Amy having to learn all this, that I’ll educate her bit by bit and at some point let go completely. Honestly, I’m not sure I’ll be able to do that.
Have your parents ever let go fully? Do they still ask what your glucose level is occasionally?
Many thanks to @theGBDOC for the opportunity to host this tweetchat and to Rachel and Louise for helping with creating some questions.