New T1 and father of T1

[James Ross]

Good evening all,

Introducing myself as I am sure I will be on here asking for tips and advice from time to time, as well as looking out for newly diagnosed T1’s and parents of to offer advice and support.

I have 2 boys, one 3 years old and the 2nd 6 weeks. My eldest was diagnosed with type 1 during a hospitalised DKA in December 2020 which was horrendous. No family history so we were perplexed. Fast forward 15 months and here I am 6 days into my own journey of officially being type 1. Again shocked a bit but I have the ‘advantage’ of knowing what to do after looking after my son for the last year.

My one initial question is a bit open ended just in terms of tips or things I might have forgotten to arrange that I may need. I have hypo kits in my car and office, DVLA and insurance contacted, wear a libra flash but have back up finger sticks etc? Any tips from the community would be much appreciated as I continue my journey without my useless pancreas!

James,

 

[rebrascora]

Hi James and welcome.

That is quite an unusual route of coming into Type 1 but I hope it will be a source of bonding between you and your son. My heart goes out to parents who have young children because it is such a responsibility and you can't directly feel what is happening. Experiencing it for yourself will I am sure, make you more attuned to his needs because I would imagine you will now relate what you experience to what you have witnessed in him.
Just curious but have you had Covid and could that have been the trigger for you?

It is great that you have Libre. Does your son have it too? How are you managing with it. Have you discovered the "Time in Range" function?
Which insulins do you have? Is your son on a pump or MDI?

There was a thread somewhere about top tips for people newly diagnosed. I will see if I can find it....

 

[Windy]

Hi James, sorry to hear about your son's and our diagnoses. Have you found the parents of diabetic children part of the forum? It might be useful to connect with other parents on there.

 

[James Ross]

Hi both,

We are convinced that having COVID as a family in August 2020 triggered my son, but no idea what triggered myself more recently. Yes I am very lucky to have been given the libre from day 1 of diagnosis. They basically said that as I know what I’m doing with management of my son they would put me straight on it. It’s very useful and helped me come to terms with having the condition myself. No my son has the dexcom G6 and omnipodsbso he is pure nova rapid whilst I am on a mix of nova rapid and Tresiba injections. Sorry but what is an MDI?

I will have a look around for those thread thanks!

 

[rebrascora]

I went back a good 10 pages but couldn't find the thread I was looking for.... I believe @everydayupsanddowns may have started it so he might be able to find it for you and link it. It was something like "top tips for newly diagnosed" or "what you wish you knew when you were first diagnosed".... along those lines anyway.

MDI is Multiple Daily Injections ie. a basal/bolus system that you are on as oppose to pump therapy that your son has with the Omnipod.

With Type 1 being an autoimmune condition, it is believed that viruses can trigger it's onset and there is a notable link between Covid and diabetes which isn't fully understood. It is often the case that Type 1 onset is slower in adults than children so it is even possible that yours was triggered at the same time as your son's but just took longer to reach the critical tipping point where too many beta cells had been killed off to keep your levels in check.

 

[trophywench]

Ah well she unhelpfully commented - it is apparently more likely that a T1 father will have a T1 offspring than a T1 mother will, they always said it was in the genes somewhere, I've never yet found out who that was in my case either. I've always suspected my paternal grandmother but not knowing exactly when she died and allegedly what of - dad was about 12 he thinks so in that case about 1930 not that long after they discovered insulin and he reckoned 'Heart trouble I think' (well most people's heart fails as they die...) I had palpitations before being diagnosed T1 aged 22, presumably on the cusp of DKA by that time, hence why I've always suspected her and therefore dad. I never told him that.

MDI is multiple daily injections, alternatively known as the Basal/Bolus system - both of which shouldn't need further amplication cos their names are what they say.

 

[everydayupsanddowns]

I went back a good 10 pages but couldn't find the thread I was looking for.... I believe @everydayupsanddowns may have started it so he might be able to find it for you and link it. It was something like "top tips for newly diagnosed" or "what you wish you knew when you were first diagnosed".... along those lines anyway.

Was it this one @rebrascora

5 Top Tips for Better Diabetesing

Just found myself absently wondering what I would say to myself if I could go back in time ‘Bill and Ted’ style and offer newly-diagnosed-me some hints and tips for better diabetes management, and a better relationship with my diabetes from future-me. What 5 hints and tips I might offer myself...

forum.diabetes.org.uk

Welcome to the forum @James Ross 🙂

Sorry to hear about your double-diagnosis. Hope there are a few nuggets in that thread to help.

 

[SB2015]

Welcome to the forum @James Ross . Sorry to hear of your doagnosis along with that of your son, but I am glad that you have found us.

The antibodies that do the work of destroying our beta cells can be triggered by a variety of things, and often it is difficult to track back to what it was. An severe illness can then tip over the balance as your body just needs more insulin, which it can’t get, overworks the beta cells that are left and finally tips us into crisis. In children the T1 often develops more quickly than in adults so it could have been the same trigger and yours just took a bit longer to progress.

Whatever the trigger we are each where we are and just have to focus on managing as best we can. This is a great place for that as there is a wealth of experience to tap into.
Whatever questions arise - Just ask.

 

[helli]

Welcome to the forum … and team.
To be honest, I spent very little time wondering why I got Type 1 - I focus on managing the future, which, I guess, is one of my tips - look forward rather than backwards.
Another tip would be to tell your colleague. I usually tell mine in case they are concerned about needles but tell them I can manage it myself.
My final tip would be to keep a diary for the first few months to help look for trends with your blood sugars. It will help that you have been helping your son but we are all different so you may find your levels behave slightly differently or you my do things your son doesn’t such a finding your levels rise when you drive.

 

[Thebearcametoo]

Welcome. What a double whammy for you. I hope you’re all adjusting well. We’re here for the stresses.

 

[Inka]

Welcome @James Ross 🙂 I remember hearing that something like 9 out of 10 people diagnosed with Type 1 have no family history of it. My consultant said it’s 20% genetic, 80% environmental - that is, it’s not so much the genes, more being unlucky enough to meet the/one of the trigger. Most people with the Type 1 genes don’t develop Type 1.

You sound pretty organised with your hypo kit, DVLA, etc etc, but do you have a medical bracelet? I’ve had mine since shortly after diagnosis and it gives peace of mind. I also like to carry a snack box as well as my hypo treatments. This has longer-acting carbs in and I’ve found it useful over the years to have an easily available source of extra carbs.

 

[Mumof1]

Hi,
I too am a mother with t1 to a son with t1. My son was diagnosed last April, I myself have been diagnosed for 19 years.
So mine all happened the other way around but I can also relate.
For my son he has told me it makes it so much easier for him as he can discuss with me and I actually get it, I'm sure as your son gets bigger will feel that too.
I think your pretty on it with what you are packing. I always have a spare monitor and bits with both my son and myself and I also have a ketone monitor that we both carry with us. Agree with keeping carby snacks with you aswell.
I found that I was fast tracked onto a DAFNE course after my sons diagnosis and found that that was really helpful to us all going forward with understanding of not only how's but why's.
My sons diabetic team also organises days out, trips and camps for t1 children and their families, one of which we are looking forward to attending in the summer.

 

[Leadinglights]

Hi,
I too am a mother with t1 to a son with t1. My son was diagnosed last April, I myself have been diagnosed for 19 years.
So mine all happened the other way around but I can also relate.
For my son he has told me it makes it so much easier for him as he can discuss with me and I actually get it, I'm sure as your son gets bigger will feel that too.
I think your pretty on it with what you are packing. I always have a spare monitor and bits with both my son and myself and I also have a ketone monitor that we both carry with us. Agree with keeping carby snacks with you aswell.
I found that I was fast tracked onto a DAFNE course after my sons diagnosis and found that that was really helpful to us all going forward with understanding of not only how's but why's.
My sons diabetic team also organises days out, trips and camps for t1 children and their families, one of which we are looking forward to attending in the summer.

That sounds like brilliant support you are getting, it must make life much easier.

 

[James Ross]

Thanks all for the replies and support. I had not thought of the medical bracelet but yes that is a great idea. Funnily enough I am a H&S consultant so I’m briefing my colleagues in the format of a training session not only for myself but so they are clued up themselves with what to look for with employees of our clients. I am quite sure I will be on here in future with many a question and I hopefully on time, support for others as there has been for me. Thanks again and talk soon.
James.

 

[TheClockworkDodo]

Hi @James Ross and a slightly belated welcome to the forum 🙂

I was diagnosed as an adult with no family history of diabetes either - it seems to be more common than we're led to believe - and now my Mum (who is in her 90s) has prediabetes.

I have two thoughts, having read this thread - one is that you didn't mention it, but I presume you have organised yourself free prescriptions? - if not you'll want to do that fairly rapidly.

The other thing is that you say you have a Libre with test strips for back up - just to say, do be aware that the Libre is not always accurate so if you're in any doubt at all do use the test strips and check on your meter. I usually test 5 or 6 times a day despite having the Libre, as I've found I can't rely on it enough to do an injection based on its reading, and I also always test on my meter if my Libre says I'm hypo, as I've had a few sensors which just got stuck and read hypo all the time when I wasn't. You may find it's more accurate for you (especially as yours will be more up-to-date than mine) but all the same, be prepared for the odd dodgy reading or even dodgy sensor.