Hi from a T1 + T1 Parent

[Bufger]

Hello to everyone. I hope you are in good health and i'm looking forward to making some friends and allies on my journey.

I was diagnosed as T1 six years ago at the age of 30. I haven't been the best diabetic in those 6 years as I've struggled with the mental journey. I have been recovering from Bulimia for two years as I started to control my weight loss through insulin and riding on the edge of DKA.. I feel like I am much stronger to cope with diabetes now and its a good thing really because... bam!... My son was rushed into hospital 4 days ago and got diagnosed with T1.

In my limited experience its a little different being a parent of a T1. You don't get as much anxiety when you're only responsible for your own life, its a whole different ballgame now.

I'm mainly here to draw from experience of other parents of T1's , including the tips and tricks, the recipes and all. I'm more than willing to share any of my experience with others.

Thanks for reading and I hope we speak soon

-Buf

 

[Thebearcametoo]

Hi and welcome. I’m sorry to hear about your own troubles and your kid’s diagnosis. My daughter (now 10) was diagnosed last March and the first few months were a very anxious time. We’ve hit a rhythm now though and things are mostly good. There will be ups and downs but if you already have an understanding of the basics you’ll work it out. You’ll notice a huge difference in terms of support from the paediatric team compared to the adult team.

 

[Inka]

Welcome @Bufger 🙂 There are a number of parents of Type 1 children here and they’re all very helpful. How old is your son?

Congratulations on your recovery from bulimia. Diabetes is a horrible thing for many reasons and the link with food can really mess with you. It’s hard not to think about food when this medical condition makes you think about food so much of the day.

 

[everydayupsanddowns]

Welcome to the forum @Bufger

Thanks for sharing your experiences and struggles so candidly. Great to hear that you are feeling stronger and more able to cope.

A member @stephknits has a daughter who also recently received a diagnosis with T1, and we have a number of knowledgeable and helpful parents like @Thebearcametoo (who has already posted) @Sally71 and @Bronco Billy

 

[Bronco Billy]

Hi @Bufger, welcome to the forum. No question is too silly, but you'll be fine, I'm sure.

 

[stephknits]

Hi Buf
Welcome to the forum, I also have type 1 and my daughter was diagnosed on 1st May. I can really relate to how different it feels being a parent! I definitely have renewed respect for all the parents of type 1s out there. Sorry to hear of your struggles with your own diabetes and glad you managed to see a way through. No where near the same, but I had a really bad hypo this time last year where I had seizures and went unconscious and ended up in A&E. This has led to me running over high as I became scared of hypos. My daughter's diagnosis has really made me pull my socks up as I want to be a good example for her.
How is your son getting on? How old is he?

 

[Sally71]

Hi there

My daughter was diagnosed at age 6, almost 8 years ago. She has just had her 14th birthday and has been diabetic longer than she hasn't, so it's getting harder for us to remember what it was like when she didn't have it! It does eventually become second nature, it took a long time for me though, to get to the stage where it wasn’t the first thing I think about all the time, and that I feel like I know what I’m doing most of the time! Even then I still get some days when I want to scream “why us “ and wish it would all just go away, my brain doesn’t want to deal with this any more.

It does get easier with time, and also as the child gets older and can do more for themselves. I used to hate leaving her with any other parents in case they didn’t understand it or take it seriously, the ones that did have her for tea did brilliantly though. Nowadays I don’t have to worry because she can just deal with it herself. She still likes me to deal with all the little adjustments to doses though and trying to work out why things go wrong sometimes!

Is your child of school age? Once he goes back to school (whenever that may be!) make sure you get a care plan in place and go through it with his teachers. This is a set of instructions which tells school staff everything about how you want the condition managed, including meal time procedure, how to spot and deal with hypos, how to deal with high blood sugar, who to contact if there is an emergency which they can’t deal with etc etc. The paeds diabetes team should be able to help you with that, our nurse even went into the school to speak to the staff for us in the first instance.

It's a real shock at first isn't it, and yes you do tend to worry about your children’s health a lot more than you worry about your own! Maybe this will help you get back on track though, and you can support each other by testing together and injecting together.

Good luck to you both, and if you have any questions do ask! 🙂

 

[Bufger]

All, thankyou for taking the time to reply.

You’ll notice a huge difference in terms of support from the paediatric team compared to the adult team.

@Thebearcametoo Yes this is already very noticeable! They have been fantastic so far and the information they provide seems to be more comprehensive than the info I received on my diagnosis.

Welcome @Bufger 🙂 There are a number of parents of Type 1 children here and they’re all very helpful. How old is your son?

Thankyou @Inka , He is 9 years old.

Thankyou for the welcome and for tagging relevant members @everydayupsanddowns

Thanks @Bronco Billy

@stephknits he is 9. He is coping really well to be honest. I thought injections would be a nightmare but he allows us to get on with it. We went to the park yesterday and he had a good run around and play, we obviously had a rollercoaster of BG and tried our best to control it. I'm sorry to hear your daughter has also recently been diagnosed. It would be great to stay in touch and share experiences as we are on a similar stage of this journey.

It does get easier with time, and also as the child gets older and can do more for themselves. I used to hate leaving her with any other parents in case they didn’t understand it or take it seriously, the ones that did have her for tea did brilliantly though. Nowadays I don’t have to worry because she can just deal with it herself. She still likes me to deal with all the little adjustments to doses though and trying to work out why things go wrong sometimes!

Is your child of school age? Once he goes back to school (whenever that may be!) make sure you get a care plan in place and go through it with his teachers. This is a set of instructions which tells school staff everything about how you want the condition managed, including meal time procedure, how to spot and deal with hypos, how to deal with high blood sugar, who to contact if there is an emergency which they can’t deal with etc etc. The paeds diabetes team should be able to help you with that, our nurse even went into the school to speak to the staff for us in the first instance.

It's a real shock at first isn't it, and yes you do tend to worry about your children’s health a lot more than you worry about your own! Maybe this will help you get back on track though, and you can support each other by testing together and injecting together.

@Sally71 You have hit on a couple of really good points here. One thing I hadnt considered but i'm now terrified of is leaving him in the care of others! Since my boys were young we wanted them to be comfortable in different environments so they often have sleepovers and parties round friends or family members. It'll take a while before I get my own independance back in this respect I think!

Yes he is school age but there are 3 other diabetics at school (on Libre's and pumps) and we are discussing his needs already between the DSN and the headteacher. We have a great relationship with the school as I used to work there so they are super supportive.

Thank you so much for the welcomes and replies

 

[Thebearcametoo]

One of the things we found hardest after diagnosis was sleepovers and staying at friends for meals. We found ways round daytime stuff but for various reasons haven’t yet gone back to her staying with friends (but have friends here). You’ll find ways to do it. We have had text exchanges with photos of food working out portion size etc. My daughter has done her own injections and testing for a while so it’s mostly that aspect that’s been the stumbling block plus the additional responsibility on another adult. You’ll work out which households are a safe pair of hands (mostly the ones who aren’t overconfident and are willing to ask for info) when the time comes.

 

[stephknits]

Although Alice is older at 16, I felt funny leaving her in the park today for a first social distancing meet up with a couple of friends. It was for a birthday picnic. She still won't inject herself so didn't eat anything, but had a good time. Was difficult not to check up on her by text whilst she was there.

 

[Ditto]

Hello and welcome to the forum. 🙂 Sorry about your lad. Congrats on beating your bulimia.