New T1 - diagnosis story

CambridgeLass

Well-Known Member
Messages
148
It's been 3 weeks now since my 6 yr old girl was diagnosed. I noticed she was drinking more and wanted to take her water bottle to bed. That evening I googled symptoms and diabetes just came up, either that or a kidney problem. My husband thought I was mad and colleagues thought I was over reacting. Tuesday went fine and I put it out of my mind, she wasn't finishing her water bottle at school either. But next few days she still took the bottle to bed and then got up one night to wee which she'd never done before. Saturday I bought glucose strips as i didn't want to seem like a paranoid mum if we went to the docs. I tested throughout the day, all positive, whereas ourselves and my 3yr old were negative. She was absolutely fine in herself otherwise. Called the out of hrs doc who said to go to the hospital. So Sun morning we woke and went to A&E. I didn't give her breakfast as thought they may want to do a tolerance test. BG was 9, a little high for fasting. They put in a Canula and took more bloods. 2hrs later it was 5.3. We were waiting for a peads doc and by now she was starving so I took her for lunch. Coming back, the doc wasn't worried and said to take out the Canula and send us home. When I questioned the symptoms she said it could be an infection - even though she has no signs and white cell count was -ve. I wasn't having it and insisted on another test. But it'll be higher now she's eaten I was told. Again I insisted as the Canula was still in. So she told the nurse to do another test to satisfy the parents and send us home if it was less than 11, and if not tell one of the other doctors. It was 22, and 3 hrs later was 31. Although I didn't want to be right, she was diagnosed Type 1, and started on insulin. I just had no idea about how many times injections were needed and about all the finger pricks and management. It broke my heart telling her, especially when she thought it would just be for a while until she got better. It still breaks my heart every time I hurt her tiny fingers and sometimes more than once if we can't get a decent drop. It's been tough 3 weeks, but she has been amazing. One of her first questions was why she has it, which I couldn't answer, to which she replied more scientists should research to find out why! Glad to have found this forum as I'm sure I'll have questions in the weeks ahead.
 

Dark Horse

Well-Known Member
Messages
1,840
Ah, bless her, children can be so resilient. Well done for getting her diagnosed, such persistence bodes well for the future. Good luck!
 

Daibell

Master
Messages
12,652
Type of diabetes
LADA
Treatment type
Insulin
Hi. Well done as you did all the right things. As you may already be aware most T1s are due to antibody destruction of the pancreatic islet cells. I gather this is partly genetic and no doubt through other causes. As your daughter correctly says even more research is needed to find out the range of causes although I suspect a cure is a long way off but perhaps future treatment may not need injections.
 

CambridgeLass

Well-Known Member
Messages
148
Hi. Yes, we have no family history so it was surprising as well as devastating. I think research is a long way from finding out triggers, there are too many variables. As for a cure, stoping the autoimmune response sadly hasn't appeared successful so far; islet transplantation may more commonly appear sooner than this. Easier management looks like it is on the horizon. Injections so far aren't such a problem and she accepts having to have them, but the finger pricks are a different story.
 

CambridgeLass

Well-Known Member
Messages
148
Dark Horse said:
Ah, bless her, children can be so resilient. Well done for getting her diagnosed, such persistence bodes well for the future. Good luck!

Thank you. Yes, children are very resiliant. She has surprised me with how strong she is. There was another very young child in the hospital the same time as us, and when her mum said it was dinner time she automatically put out her finger. Amazing.
 

jayne15

Well-Known Member
Messages
115
Hi we are 11 weeks into diagnosis for our 7 year old little girl we were like you- symptoms-googled-diabetes-hoped it was a urine infection-GP=A+E.

It will get easier and the key for us was our little girl learning to do things for her self your 6 year old will inspire and amaze you when she starts to do this, Meg is doing all her own BM's now and wont let me do them because I am not as good as her ! and she injects her own insulin if requested to do so.

We were like you absolutely devastated this will get better I promise. There are lots of ups and downs- your brave daughter will get you through the rough time xx

A star chart worked for us doing own BM's got a star-10 stars= trip to claires accessories. Meg was doing her own BM's within a week. For her insulin (we had to pin her down for a week) she got 5 pounds within 2 weeks she was doing this for herself and was loaded !

good luck and if you ever need to chat PM me x
 

CambridgeLass

Well-Known Member
Messages
148
Thanks, Jayne16. That's encouraging. Well done to Meg for being so wonderful!! :) As I'm new I have do have a few posts then I'll be able to PM. xx