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New mum of type 1

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This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
A

Adrasteia

Active Member
Relationship to Diabetes
Parent of person with diabetes
Hi all,

My son was diagnosed with T1 a month ago - 2 days after his 4th birthday - and i'm still feeling pretty overwhelmed. The support we've had from our diabetes team has been incredible and the day to day management has been going really well but i suppose i'm feeling at a bit of a loss. I feel fine about all of the carb counting, ratios, injections etc and i've been reading up like a demon but I can't get past the 'why him', 'it's so unfair' angry/sad/guilty/really angry mindset. Knowing that it's noone's fault, it's not going to limit him and all that other logical sensible stuff which i really do know and do accept doesn't seem to help those thoughts go away.

I hope that's ringing bells with others, and if so i'm open to any ideas on how to constructively deal with it - i hate feeling useless!

Thanks
 
Hi Adrasteia

Sorry you have to be here, but welcome to the forum! It sounds like you're coping well with the medical side of things, which is a good start, and if you have a medical team which knows what it's doing that's even better.

Regarding all the negative thoughts, after 3 years I still occasionally get sad about the fact that my daughter's body can no longer sustain itself without medical intervention, the only way I can deal with that is try to banish those thoughts from my mind. I have to remind myself that 100 years ago she wouldn't have survived, and I have to be grateful that we live in a time and a place that we can get what we need to keep her alive and give her a happy life. I also try to remember that it could be worse, at least it isn't terminal! Insulins and technology are improving all the time, I don't know if there will ever be a cure in my daughter's life time (they've been saying it's 10 years away for at least 50 years!), but hopefully her quality of life can only improve.

I don't know if that helps, but it's the only way I can do it, you just have to try to channel all the negative thoughts and energy into something positive.

You might well still be in shock too, you need to grieve for the perfect life you no longer have. That can take time for some people but once you've got through it you'll feel a whole lot better, honest!
 
Hi Adrasteia, welcome to the forum 🙂 Very sorry to hear about your son's diagnosis, and at such a young age. It's great that you are receiving such good support from your team. It's all a bit of a whirlwing to begin with, but things do get better, with time and experience. Can I suggest you read Adrienne's essential guide for parents of newly diagnosed children, it might help you to understand you are not alone in feeling as you do. I'd also highly recommed getting a copy of Type 1 Diabetes in Children Adolescents by Ragnar Hanas It will explain everything you need to know about living with Type 1. Well, maybe not everything, but for those things it doesn't, you have us! 🙂

The Children with Diabetes website is a very useful resource for parents. Also, you might be interested in getting a JDRF children's 'KIDSAC' with Rufus bear.

What insulin is he on? How is he dealing with the injections and fingerpricks? Please do let us know if you have any questions or concerns and we will do our best to help 🙂
 
Hi Adrasteia and welcome.🙂 Sorry to hear about your little boy's diagnosis. It's only natural to go through a period of sadness - I certainly did - but it does get better. As Sally says, try to focus on all the positives, I've found that really helps. 😱🙂
 
Thanks all for the messages. We've got a 7 month old and i've just returned to work from mat leave so i suspect the diagnosis on top of an already emotional time is pushing my limits a bit!

Adam is on Levemir twice daily and Novorapid, and has dealt with the injections brilliantly since leaving hospital. We're struggling a little with compensating for exercise - he swims like a fish! - but hopefully more time and experience and we'll get that sorted.

Northerner, thanks for the recs. The hospital gave us Rufus who he loves and i have the Hanas book - it has already saved us from an ice cream related hypo, it's brilliant. I'll definitely have questions that only group wisdom can help me with though so thanks again for the welcome!
 
hi,
sorry to hear of your son's diagnosis. I can't really offer any words of wisdom apart from try to focus on the positive….I know its easier said than done….but I always try to remind myself that there are loads of conditions and diseases that are so much worse than T1 diabetes !
I was diagnosed 20 years ago and the changes that I have seen are amazing, and thats only in 2 decades.
take care of yourself xx
 
Hi
Sorry to hear about the diagnosis. From someone who was also diagnosed aged 4 - 56 years ago, growing up with it means it is just a part of life and the things you need to do like testing, injections or a pump, become habit. I think it must be harder to cope with if diagnosed as an adult as it would be a whole lifestyle change. At 4 he will adapt well but I can see it must be much harder for you. 🙂🙂
 
Welcome to the forum. From someone who has been T1 from the age of 3 (49yrs). Please keep going & every day you will learn how things work. Good luck with looking after those 2 🙂
 
Its normal to go through all those feelings............its usually the diabetic patient themselves but at 4 years old that burden falls on you.......:(

Sounds like your doing a great job..........just surround yourself with family and you will get through these emotional times in no time at all......
 
Adrasteia said:
Hi all,

My son was diagnosed with T1 a month ago - 2 days after his 4th birthday - and i'm still feeling pretty overwhelmed. The support we've had from our diabetes team has been incredible and the day to day management has been going really well but i suppose i'm feeling at a bit of a loss. I feel fine about all of the carb counting, ratios, injections etc and i've been reading up like a demon but I can't get past the 'why him', 'it's so unfair' angry/sad/guilty/really angry mindset. Knowing that it's noone's fault, it's not going to limit him and all that other logical sensible stuff which i really do know and do accept doesn't seem to help those thoughts go away.

I hope that's ringing bells with others, and if so i'm open to any ideas on how to constructively deal with it - i hate feeling useless!

Thanks
Click to expand...

Hello and welcome to the forum.
You are quite right no one is to blame least of all you so no1 rule is try and banish any guilt feeling you may have.

As a mum you will worry about Adam to the day you die. Speaking from experience here 🙂 My mum is almost 80 years of age I was diagnosed over 50 years ago and left home at 18 Mum still worries about me 🙄
 
Thank you all for the support.

Things are slowly getting better, we're finished the new patient sessions at our clinic and moving on to the quarterly appointments. HbA1c was down from 80 at admission to 56 so we're pleased he's making good progress. Hopefully at our next appointment we can join the waiting list to get a pump - it's the Medtronic 640G which seems to get such positive reviews!

It's getting a bit easier to see now that despite his diabetes he's a really happy, healthy little boy and I'm lucky for that!
 
Pleased its heading in the right direction. I had 40 odd years of up to 4 injections a day 😱 A pump is far more controllable. Can you imagine being at a buffet. A couple of pushes of button & you could have that whatever 😎
 
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This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
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