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Very newly diagnosed TD1 22 year old son

H

HelenNicholas

New Member
Relationship to Diabetes
Type 1
Hello, my son was diagnosed on Thursday with T1D after going into DKA, which the GP missed. We are all in shock and getting used to our new way of life. He is running high a lot of the time. The clinic have said not to worry (phone call), I know everyone is different, but should we be seeking more help? With many thanks
 
Welcome @HelenNicholas 🙂 Sorry to hear your son has had to join the Type 1 club. It can be very overwhelming to start with, but it will gradually get easier.

How high is your son’s blood sugar? It’s normal to bring blood sugar down slowly so his targets will be a bit higher than longer term Type 1s. The only thing to watch for is ketones, so if he’s high he should test for those.

When he and you are ready to read up on things, these are the books often recommended for Type 1s on this forum:

Think Like a Pancreas’ by Gary Scheiner.

And Type 1 Diabetes in Children Adolescents and Young People by Ragnar Hanas (ignore the title - great for adults too)

Think Like A Pancreas is American but I liked the chatty style and it contains some great information, as does the Ragnar Hanas book. They’re books to read over time and to refer to. Type 1 is a huge learning experience.
 
Thank you. It's such a shock. He's running around 14-18 after meals generally. The clinic do not seem concerned, but as parents, we are. Thank you for the recommendations; I will certainly look when I feel like facing it.
 
Does he have a Libre sensor or other CGM? It’s normal to ‘spike’ after a meal, especially early on when your son will be on conservative doses of insulin for safety. How long after the start time of his meal is he testing? Does his blood sugar come down by the next meal?
 
Hi @HelenNicholas and welcome to the forum - sorry to hear about your son's very recent diagnosis - it is a big shock for everyone concerned - if he's just getting over DKA his blood glucose will be a bit high to start with and it is best to bring it down gradually - even non-diabetics will have an increase in their levels in the first couple of hours after eating - a rise into the mid-teens so soon after diagnosis shouldn't be too much of a concern, and as you say, it comes down again so the insulin he is taking is working - good that he has a Libre but try not to get too hung up on the numbers, particularly at this very early stage - sounds like you are all doing the right things anyway, and please ask away if you have any more questions - no questions are considered "Silly" here - we're all here to help and support each other - glad you have found us
 
HelenNicholas said:
Hello yes he has Libre; isn't that ironic; my husbands team at Abbott designed it! We have just been watching; he's in denial atm; seems that it spikes after a few hours. Yes it comes down before next meal time
Click to expand...

The Libre tends to be most accurate within the normal range of blood sugars. Many people find it can read higher than you actually are once your blood sugar goes above range, eg the Libre can say 14 but someone can actually be 11.5. As he’s coming down by the next meal, that sounds ok.

The mental and emotional load of Type 1 is often underestimated. It’s wearing day after day with never a day off from counting, calculating, testing, etc etc. At the beginning it can be both upsetting and enraging. It really does gradually improve. It’s never fun, but it becomes a little easier as time passes. The first weeks are mad, then the first few months tend to be less mad, and after 6 months you feel you’re coping better. All you can do is be a listening ear and be sympathetic. Let him be angry, let him rail against it, and comfort him when he’s upset. All those emotions are very common. There’s something tortuous about the constant focus on food, insulin and blood sugar, but that focus will melt into the background a bit more over time.
 
Sorry to hear about your son’s diagnosis @HelenNicholas

I was diagnosed just a year younger than your son, and I can remember how it knocked my Mum completely sideways.

But if it’s any consolation over 30 years later I’ve not got much to show for my years of pancreas impersonation other than some slightly thick skin on the sides of my fingers from all the fingerprick checks!

Diabetes is annoying, fickle, infuriating, and occasionally belligerently, stubbornly wilful - but it is something that can be managed, with a bit of care and attention, and it shouldn’t stop him doing anything he wants to. It’s just that some things might need a bit of lateral thinking, and some extra precautions.

It’s pretty common for hospitals to bring down levels gradually over days and weeks rather than trying to get them down faster (which can actually put more stress on the fine blood vessels and nerves endings if it happens very quickly).

It’s perfectly natural to be worried, and to feel overwhelmed in the beginning. There’s a lot to process, and it’s a very steep learning curve.

Hang in there - it will get easier. And in a funny kind of way, there’s never been a better time to get diagnosed with T1 diabetes. The latest insulins, monitoring technology, and delivery systems like smart pens, insulin pumps and hybrid closed loops, make optimal T1 management arguably more achievable than ever before.

Keep us posted, and keep asking questions.
 
Hi and welcome.

As has been said it’s not a bad thing to be running higher than range at this point in his diabetes journey and if his BG comes down too quickly he can end up feeling rough (my kid nearly fainted in hospital when they brought him down to 6 from high 20s). And also as has been said the Libre is less accurate out of range so he may not be as high as it says.

It’s great that he has a sensor already as that’s really helpful for data gathering and the first little while is all about see how his body reacts to insulin so they can work out his ratios etc. Try to patient and don’t sweat the small stuff. Hypos (lows) need immediate treatment. Hypers (highs) need dealing with but less urgently and often can wait until the next mealtime unless he’s feeling very ill from them. As he’s more in range he will feel the highs more but right now it probably feels pretty normal for his body and he’s getting insulin so they’re managed highs and he’s much less likely to go back into DKA.

Also. Depending which insulin he’s on for his bolus it’s likely to have a lifespan of around 4 hours in his system so don’t get too worried about spikes shortly after eating.
 
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