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Hello - My son has just been diagnosed with T1D

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JessD

New Member
Relationship to Diabetes
Parent of person with diabetes
My son is in 14 and newly diagnosed with T1D (just last week). His dad and I are still trying to absorb everything we need to know and coping day by day. I’m really struggling with the guilt of not realising something was very wrong before my son got so ill and am afraid that there will be permanent damage to his organs.
 
High @JessD and welcome to the forum. I am not in your position but one thing I have noticed is that just about every "new" parent feels the same as you do now. Put it out of your mind if you can, there is enough to focus on in sorting out your sons new routine and I am sure some of our parents will be along to give you some pointers.

How is your son taking it? Another thing I have noticed is just how resilient teens and sub teens are when it comes to getting on with things T1. It is wonderful to see.
 
Hi @JessD and welcome to the forum.
It must be a huge shock but it’s not your fault. There will be plenty of things to learn and to adjust to and you’ll do so as a family, together.

How’s your son taken the news and can you tell us a little more about the circumstances leading to his diagnosis?
 
Hi Jess and welcome to the forum. It can be overwhelming at first, and very often parents are in the same position as you with the feeling of guilt. It isn't your fault, Type 1 Diabetes just happens and if you don't know about it, then it is hard to spot the symptoms. How are you all coping in general? How is your son? If there are more questions ask away.
 
Thank you @Docb @MrDaibetes @ColinUK.
My son is doing amazingly well in the circumstances. Totally got the hang of testing and injecting really quickly and it’s lovely to see his strength returning.
The signs were all there but we just didn’t join the dots. He’s 14 and not very communicative at the best of times.
He was very thirsty and needing to wee a lot but he didn’t say anything and I wasn’t aware that he was getting up a lot at night. We have since learned that teachers were getting cross with him at school because he kept asking to go to the toilet. He fell asleep twice at school but they didn’t tell us. One teacher even sent him out of the classroom for falling asleep! We’ve only found this out subsequently.
I had thought he was looking skinny but put it down to a growth spurt. It wasn’t until things got really bad that I weighed him and realised how much weight he’d lost.
He also complained about pains in his legs quite often but I had no idea this was a symptom of diabetes. I thought it was just ‘growing pains’ or sore muscles after exercise (he’s very sporty).
He was also very tired but I thought maybe he was staying up too late on his Xbox/phone even after we’d told him to turn them off (or being a lethargic teenager). He was also pretty moody and irritable but I put this down to being a ´normal teen’.
He was also complaining of nausea/feeling sick and not eating much at mealtimes but then also feeling very hungry at other times and constantly snacking. He’s always been a bit of a fussy eater so I thought he was filling up on rubbish between meals and then turning his nose up at proper home-cooked food with actual vegetables in.
When he didn’t want to go to football training last Wed eve because he was so tired and asked for a note to be excused from PE the next day, I realised something was very wrong so I weighed him, was horrified to see how little he weighed and rang the doctor. He asked all the right questions and told us to take him up to the hospital.
I know I can’t blame the school but it breaks my heart that he was being given a hard time by his teachers when he was so ill. I’m also pretty appalled they didn’t let us know that he’d fallen asleep in class (at least twice that I now know of and only because one of his mates told his mum who has since told me). Having now learned that the average age of diagnosis of T1D is 13, I do feel there should be a greater awareness in schools.
 
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@JessD I certainly wouldn't beat yourself or your son's school up for not joining the dots. I was diagnosed as an adult and assumed I was going to the toilet more than usual because I was drinking more; I was exhausted because I had a lot on at work; my eyesight was blurred because I probably needed glasses but was too vain to get hem tested; and why would I pay any attention to a bit of weight loss?

I was not aware that the average age of diagnosis was 13. More people are diagnosed as adults (over 20) than as children. Whatever the age, when you experience a Type 1 diagnosis, you definitely think more of us should know about the symptoms.

Glad your son is doing well. You mentioned his football practice so I assume he is into his sport. There are a couple of short interesting articles about Henry Slade and Chris Pennell - two high level Rugby Union players (Henry Slade is a England team regular) with Type 1 diabetes.
Sorry, I have not come across any football players with Type 1 since Gary Mabbutt but he's probably a tad old school for a 14 year old.
 
Welcome to the forum @JessD

Sorry to hear about your son’s diagnosis, but I agree with others - try not to torment yourself with blame for not acting sooner.

All of the reasons you suggested for your son’s emerging symptoms were perfectly likely, and it was only natural that it took a while to gradually put the pieces together.

I have a good friend who has been living with T1 since childhood, and is an active diabetes advocate and raises lots of awareness, but when his daughter was recently diagnosed with T1 it took him a very long time to put 2 and 2 together, because just like you, there were always easier and more obvious explanations.

Glad to hear that your son is adjusting so well and that his strength and sparkiness is returning 🙂
 
Hi and welcome to the forum
My 16 Yr old daughter was diagnosed in May and I have type 1 also. It was my daughter who picked up the symptoms and asked me to rest her blood sugar, so even armed with all the knowledge, life can still get in the way. I still feel guilty though! Part of being a parent i guess. We got a.lot of help from the team's psychologist, who my daughter still sees on a regular basis.
 
Hi and a very warm welcome @JessD

I'm sorry to hear about your news, but echoing what everyone else has said please do not blame yourself. I was 9 when I was diagnosed and I remember my mum being upset that she didn't notice as she is a lead first aider in a school. It's natural to feel guilty but, from my experience, teens that are diagnosed are so so resilient and just take it in their stride and by the sounds of things your son is already doing a fantastic job!

In terms of the school, I understand your frustration. It may be worth organising regular meetings with the school nurse and getting in touch with your son's healthcare team in order to draft an Individual Health Care Plan for him while at school. I know that once I had one of these in place when I was at school, the staff were far more understanding and supportive with managing my diabetes. 🙂
 
Hi and welcome. Before my daughter was diagnosed I googled symptoms of diabetes several times as she was drinking lots and weeing in the night etc but otherwise seemed really well and everything I read talked of how ill children were when diagnosed so I talked myself out of it for about a month before finally going to the GP. Hindsight is 20:20 as they say. Now I know that she had clear symptoms and would encourage everyone to get checked out even if they feel mostly ok. Guilt is totally normal.
I’m glad he’s taken well to the testing and injecting. We’re here for info and to help you to work through how you feel about it all. My daughter is now on a pump and CGM but has had good management since diagnosis. We often have to change ratios when she grows etc so get used to things always needing changing.
 
,,,, and when my mother told me (aged 22) I had the symptoms of diabetes I told her not to be so flippin dramatic, it won't be anything serious! Ooops.

Main thing now is to just forget all the angst - that don't help anybody, does it? - and get on with both helping him tackle his diabetes!

A very helpful book (and don't be put off by the title, cos the bulk of what's in it applies however young or old you happen to be when diagnosed Type 1) is

Type 1 Diabetes in Children, Adolescents and Young Adults (Class Health): Amazon.co.uk: Hanas, Ragnar: 9781859591536: Books

Good luck!
 
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