18 month old with T1 - mum - new

[Lspr15]

Hi all
I was wondering if anyone with a tiny one is on here and could share some wisdom and encouragement.
We are in week 2, he is coping really well and we are lucky to have a Dexcom g6 and I think a pump is hopefully planned down the line. Sugars are high during the day and I know his teething and cold aren’t helping, and I also know it’s early days, but I can’t help but feel I’m failing him!
Also a lot of anxiety about handing over to childcare providers down the line as a lot of trust is required.
Thanks 🙂

 

[Inka]

Hi again @Lspr15 🙂 I can tell you one thing - you’re not failing him! Type 1 is hard, and it’s particularly hard at the beginning when you have to leap in with both feet and start all the practical stuff while you’re still trying to get your head round the emotional shock.

It’s also difficult with young children as they can’t communicate and are rather unpredictable in both their eating and activity levels. I know we’ve had a few parents of younger children join recently but I can’t remember their names to tag them. I will do if I find them. I know two children who were diagnosed at 2yrs old. Both have pumps. It makes giving tiny doses much easier. Some pumps will link with the Dexcom too eg to suspend insulin if they’re heading low.

 

[Thebearcametoo]

Hi and welcome. My kid was 8 when diagnosed so we had a different journey to you. The G6 will help lots in being able to see patterns and once you get a pump that will help with the basal for different times of day.

The first few weeks are hard. Like super hard. And when you add in how much kids that age change as they grow and go through developmental spurts and you’ll be dealing with lots of changes.

It’s normal to take it slow to get into target. To begin with it’s about reducing the glucose and then a lot of data gathering to work out the right basal and the right bolus ratios. You will feel like you’re chasing your tail a lot but honestly you’re doing way better than you think.

There will be a psychologist attached to your team. Use them (there’s often a wait). They’re there to support you and your family as well as your child. You should be getting lots of support from your diabetes nurse and the rest of your team but don’t be afraid to contact them if you need more info or you’re worried about anything. Their out of hours number is there for a reason. We used it way more in the first few months than we have since. If you have concerns in the middle of the night you can call your local paediatric ward too.

One word of warning with the Dexcom. It can be too much information and you can find yourself obsessing over the numbers. As long as he’s not hypo the reading in the moment doesn’t matter. You’re just gathering data so you (and his team) can see trends. It can be easy to stress because you can see it all in (near) real time. The benefits of it are fantastic though and I love that I can just grab my phone in the night and check levels without getting up

 

[Lspr15]

Thanks so much @Inka and @Thebearcametoo this really put things in perspective. I’m definitely a control freak and perfectionist, so constantly looking at all the data and getting frustrated. His dad has type one diabetes and was diagnosed at the same age. He is much more realistic and laid back, so hopefully it will be a good balance overall. I’ll bear in mind that my job is to give what I’m supposed to and keep him safe, the tweaking is up to the experts.

 

[rebrascora]

Thanks so much @Inka and @Thebearcametoo this really put things in perspective. I’m definitely a control freak and perfectionist, so constantly looking at all the data and getting frustrated. His dad has type one diabetes and was diagnosed at the same age. He is much more realistic and laid back, so hopefully it will be a good balance overall. I’ll bear in mind that my job is to give what I’m supposed to and keep him safe, the tweaking is up to the experts.

Until you yourself become the expert..... and you certainly can be, especially with all the tech and data that we now have available.... but there is a long way to go and you are just at the start of that journey, so yes, those are good goals, to just tootle along following the guidance and keep him safe in these early weeks and months.

My heart really goes out to all parents in this situation as it must be 10x harder to watch your child go through this and carry that huge burden of responsibility for keeping them safe, than to deal with it yourself when you can see and feel and reason it out for yourself.

Anyway, really just wanted to say welcome from me too and please go easy on yourself because you don't yet have the skills and knowledge and most importantly, experience to be good at it yet and even when you do have all those things, the Diabetes Fairy still throws a spanner in the works occasionally just to challenge your confidence and self belief. Getting it right most of the time is the very best that we can hope for and learning damage limitation for the times when we don't 🙄 .

 

[everydayupsanddowns]

Welcome to the forum @Lspr15

So sorry to hear about your little one’s diagnosis.

I am in awe of parents of T1s - you are amazing. It’s hard enough juggling BG from the inside, but parents of CWD (children with diabetes) seem to develop ninja-like skills and a 6th sense of what is going on.

A former member of the forum whose daughter was diagnosed very very young write this some time ago, which may have some helpful practical tips

The essential guide for parents of newly diagnosed children pt.1

Written by Adrienne - many thanks from all the Moderators! Hiya I have been asked to write a ‘sticky’ for the parents, especially the newly diagnosed families. So welcome to all. A bit about me and mine first. We've been at this 11 years now, my daughter is 11 years old and had her first...

forum.diabetes.org.uk

Her daughter is now off studying at medical school and shows no sign of being held back.

There’s also this blog ‘the understudy pancreas’ which you may enjoy dipping into. This post reviews the first 12 years of Pumplette’s diabetes, with some reflections from around the time of diagnosis. Again Pumplette, now grown into young adulthood, is about to start at University.

12 years on – consult that!

Pumplette at diagnosis It has now been 12 years since the uninvited houseguest latched onto Pumplette & came to reside in our home. I’m so proud of the young woman she is fast…

theunderstudypancreas.com

And feel free to use the forum to ask questions, offload, vent, wail and sob. It’s OK. We get it. 🙂