Type 1 Diabetes Diagnosis, and Things They Don’t Tell You!

 

When my son was first diagnosed at the age of 5 with type 1 Diabetes it was a very scary time, he almost died, and as it was a Friday night we had no input from any diabetes experts for a long time (it felt longer than it was). I made the mistake of googling in that time and of course found all sorts of horror stories and worst case scenarios!

 

Type 1 Diabetes blood test kit

 

I have comprised the list below, which I am hoping will be a little helpful tips list for those of you who have had a child recently diagnosed. I also have a Meet the Parents of Children with Type 1 Diabetes section of this blog, if you would like to read about other parent’s experiences. They offer some advice as well.

All of this is in my own opinion, but helpful I hope!

 

Things they don’t tell you…….

HYPOS

 

  • The best thing I have found for dealing with hypos is Lucozade, the glucotabs and anything that is in a solid form takes longer to work as it needs time to digest. Liquids hit a lot faster, and have less of a rebound (high blood glucose levels) effect later on. Hypo treatments can also be individual, you’ll find what works best for you over time.

 

  • If you use lucozade invest in some small measurement plastic cups to measure how much Lucozade you give, which stops you from over treating or similarly under treating! I found ours on ebay and they hold up to 60mls and were very cheap. If you experiment with it you should find your own level of mls that works perfectly.

 

  • They will act in bizarre ways whilst low and it does affect their behaviour, however they WILL try it on and start behaving even worse once they see the low numbers on the meter! “Why did you hit your brother?”….”Maybe I’m low?” was the classic conversation in our house for a while, until my son realised I wasn’t going to let him use diabetes as an excuse for everything!

 

CARB COUNTING

 

  • Carbohydrate counting is a god send. If they want you to do a course then do it, it completely changed my sons hba1c results for the better.

 

  • If there is a waiting list for a carb counting course then look online, all the information is available, and if you would like any advice feel free to contact me on here! I have also written a basic¬†guide to Carb counting.

 

  • At first carb counting seems daunting, and there will be plenty of cold meals for yourself whilst you do the calculations, but it DOES get easier and honestly becomes second nature after a while.

 

CORRECTION DOSES

 

  • When my son was diagnosed I wasn’t told or made aware that correction doses existed for a while, but they do!

 

ILLNESS

 

  • Even if they aren’t eating due to being sick, they still need insulin to avoid the ketones in their blood building up. Stopping insulin only makes them more ill. If they really can’t stomach eating, then sips of a sugary drink through the day should keep their levels high enough for you to get a few units of insulin in.

 

  • If they are ill and able to eat, then they are likely to need more insulin than normal – ask your diabetes team for a print out of the guidelines for how much, as they should have a guideline for you.

 

  • If in doubt get them checked out – don’t worry about being a pain or fussing, it’s always better safe than sorry. Most decent doctor’s surgeries will give you a priority appointment because of them being Type 1.

 

INJECTIONS

 

  • Originally they gave my son 6mm needles, but 4mm are available, they’re less painful, and much better for skinny children, so don’t be afraid to ask for them.

 

  • Injections do hurt at first, but they do get used to them, and you’ll be amazed at how high their pain threshold will become thankfully!

 

  • Make sure you rotate sites often, to avoid overuse of any sites.

 

BLOOD GLUCOSE TESTS.

 

  • Before giving a large correction dose of insulin, always check the blood glucose level of the other hand! Bizarrely my son’s hands can vary by as much as 5.0! If I had known this originally I would have avoided several lows from over corrections.

 

    • In the same respect if they tell you they feel low/hypo, and they are a normal level on one hand, try the other one to double check.

 

    • Don’t blame yourself, you will be doing everything you can because we as parents always do, and annoyingly blood levels often seem to have a mind of their own, especially whilst they are growing, and even more so during the honeymoon period, when their bodies ‘helpfully’ still make some insulin that randomly kicks in when you aren’t expecting it.

 

MOST IMPORTANTLY

 

They have diabetes, but that is not WHO they are! Don’t let them let it rule their lives. Tell them that they can achieve anything, that they are ridiculously brave and amazing, as every type 1 child who puts up with everything that they have to is.

I will add to this if I think of any more as this was just what popped up in my head! Please do contact me, if you are a type 1 parent and can add to this, or have just experienced similar!

 

Stevie x

Type 1 diagnosis and things that they don't tell you

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4 Comments

  1. 26 January 2015 / 11:22 am

    Does it become second nature? Do you ever get to the point where you can look at a burger in a restaurant and just know how many carbs are in there? We’re fine as long as I’m at home, with my scales, but eating out floors me completely and I make such a fuss of weighing stuff at friends houses that she’s a bit sick of me to be honest. I’d love to know that one day we’ll be able to accurately guess what’s on her plate!

    • 26 January 2015 / 11:38 am

      I promise you you’ll find it so much easier as time goes by! You also need to allow yourself to relax and sometimes just think that a rough estimate will do if you’re out and it’s really awkward! At the end of the day if she is high later on you can correct, and know next time to use higher for that meal, and if she goes low…well you know what to do! Sadly though it does become so second nature that I know the carb content of 1g of pretty much any vegetable or type of potato there is off by heart! How long has she had type 1? My son has had it for 5 and a half years since he was 5, and so many things that seemed so hard to begin with have become second nature.
      We still have our bad days where we get a bit angry at the world and at the unfairness of it all, but most of the time we really do ok, and live a pretty much normal life. He even goes for sleepovers EEEK which scared the life out of me at first! Feel free to message me on here on twitter or acornishmum@aol.co.uk if you ever want to rant or are wondering about something Type 1 related! x

      • 26 January 2015 / 4:39 pm

        Sleepovers I do find very stressful. I’d like her to have Dexcom so at least there’s a chance of her waking up if she goes low in the night.
        We’re only 5 months in, and doing fine with HbA1c but that’s only because I work 24/7 to understand it, and because she’s so responsible about it.

        • 26 January 2015 / 4:51 pm

          Only being 5 months in as well means her pancreas is probably still partly working and very ‘helpfully’ randomly kicking out a bit of natural insulin at annoying times! Things settled down for us a lot once his pancreas completely stopped doing what it should…although I felt a bit sad about this as well!
          For sleepovers, I let him run higher than I would at home for overnight, for mine and his peace of mind! I can’t say that I actually sleep all that much when he is on a sleepover though… It’s great that she’s being responsible, as a lot of people aren’t at first, as it takes a real adjustment!