T1 parent with a healthy son

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Gog78

Gog78

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Relationship to Diabetes
Type 1
Hi
This is my 1st post so please be gentle with me!!!
I'm T1 diagnosed 18 years ago and have a 3yr old son. So far he is perfectly healthy but ever since he was born I've been worried that I may have passed diabetes onto him (my dad and his mum-mobile gran- also had/have T1) .
Every time he drinks a little more than usual, says he's tired or goes to the toilet more often I have a nagging worry that he may be developing diabetes! Sometimes I feel like it's totally irrational but I can't seem to shake this feeling! It didn't help that when he was ill over Xmas with tonsillitis, the out of hours Doctor checked his wee and said that there were high level of ketones showing. She hadn't been made aware that I was diabetic at this point but when I mentioned it she tested his bloods and they were OK said that ketones is an indicator that a child is dehydrated.
I can honestly say that the bottom fell out my world when I heard the word ketones! When we got back to the car I broke down and took a while for my wife to get out of me what was wrong.
Ever since then I haven't felt right and feel sick at the thought of something that might not even happen. It doesn't help that I feel like I'm suffering from burnout too after a pretty crap year. How do other T1 parents cope?
 
Hi Arwyn, welcome to this very friendly and supportive forum.

The first thing to say is that ketones can be present in dozens more conditions than diabetes, and in an infection like tonsillitis, where there is a minor catabolic effect (fat being burned up to help fight the infection), you will always get ketones in the urine, particularly if there is dehydration. Urine ketones in the absence of a load of glucose does not indicate diabetes.

Type 1 Diabetes is not inevitably inherited. I’m one of three brothers with a T1 mum, and neither of my brothers are diabetic. Im the lucky one with T1. And your son, having half his mum’s genes, might never develop it. More likely than not, he won’t.

So try not to worry. I can well understand your reaction when ketones were mentioned, it must have sounded like the knell of doom. But it wasn’t, as your doctor said. Try and forget it - it was just a reaction to the infection. If you don’t believe me, test his urine for ketones when he gets around to catching chicken pox.

All the best

Mike
 
I struggle with this one too, I did even resort to testing my 4 year old’s blood sugar once when he’d asked for a few too many glasses of water, then felt bloody awful for doing it. I think it’s like everything in life, try not to plan for pain and cross each bridge as it comes. No one in my family has diabetes so the only saving grace for me is that if my son were to develop it (fingers crossed that won’t be the case) at least I am there with the right knowledge and support, as you and your family would be for yours (generations of knowledge!) I also think technology such as the libre would help to reassure me as a parent. Be assured you will cope no matter the outcome 🙂
 
I have been scared to get pregnant for this very reason. Scared of passing on my diabetes. I had counselling and the best advice they gave me was this:

In the worst case scenario, that my kid is diagnosed type one, well at least that kid will be in a family who understands the disease and will understand the needs of the child.

I felt that really helped me.
 
Hi Arwyn
I think we've probably all been there. As parents, type 1 or not, we are naturally wired to worry about our children, particularly our first when every stage and experience is new to us. Can't be many parents who haven't crept into a bedroom in the middle of the night to check our child is breathing, hasn't worried about a high temperature and checked for rashes, gone to gps with exceptionally tired child and been concerned with all manor or childhood illnesses...and yes I've worried about the extra drinks many times. It's just that as type 1s we have our own personal worry. I know quite a few type 1 parents, none of their children, now adults, have developed diabetes.

There's absolutely no history of type 1 in my family going back or sideways, but here I am.

Mike, Roisin and Amberzak all make very good points and I hope they go some way to help ease your worries. These cant have been helped if you've had a rough time recently yourself...I hope this year is a better one for you.

Now you need to get back to worrying about the chaos, disruption and fun that the "terrible threes" bring! 🙂
 
I feel the same way Arwyn. I also have been T1 since being 3. Its a horrible feeling that gets you. My kids are ok & my son is 6ft3,16 & runs as fast as anyone. Kids ! Whed av em ? Really good luck & I know how you feel 🙂 .
 
It would be unnatural not to worry about your children- that's what good parents do and it never stops. At least you will be prepared if, God forbid, your worst fears come to fruition.
My son was diagnosed T1 at the age of three, thirty years ago now. They kept you in hospital in those days and the hospital allowed one parent to stay overnight with the child. I remember that day he was diagnosed I sat in my car in the hospital car park and wept my heart out. But here we are thirty years later and still worrying about him.
As a parent you have to cope with whatever happens to your children whether it's a grazed knee or a serious illness. Just ask your dad!
Trust me, you will cope.
 
Thanls everyone! I think everything just seems worse coz i've not been in the right frame of mind lateleylateley-im (few months if truth be told and keeping kit to myself!) it's impacting on my daily life and work now too so I've left a message with my lead diabetic nurse and hopefully she'll get back to me next week! Just need to sort my own head out more than anything-always good to know that u'r not thetonly one and hearing from others in it he same boat
 
Apologies for the poor typing-running round after the boisterous 3 year old mentioned in my first post
 
Both myself and my husband are type 1, with a nearly 5 year old.
He is perfectly fine with no health issues. The only thing we were told is that if we had concerns, he would be checked as a greater priority due to our health.

Unfortunately some of us get the short straw and there is no way to know
 
Thanks everyone. Just an update-I can't get an appointment to see my diabetic specialist until the 2nd of March and coz I wasn't getting any better went to see the gp. She diagnosed me with depression and started me on antidepressants! Not sure I like the idea of even more medication, but was in such a bad place that I took the prescription and had one tablet. I haven't taken another one yet as I'm not sure it's the right thing to do! I have been feeling progressively worse though, struggled to even get out of bed this morning, been skipping meals and feel so down and sick with worry that I don't even recognise myself any more. It's scary coz I always used to be the positive one, laid back and wouldn't let anything worry me! Feeling burnt out started all this off and now my head just feels broken and this is affecting my diabetes too! It's just a horrible vicious circle and I just want snap out of it!
 
Don’t worry, Arwin, you will improve with medication, though in your situation a few CBT (cognitive behavioural therapy) sessions would help as well. Been there, done that.🙂
 
It takes one day at a time. At the moment you feel trapped with no way out but I assure you there will be. I have been there and it's not pleasant. I tried to concentrate on the positives in my life and gradually it got better. Talk to those around you. You have a three year old son, concentrate some of your time on him. It will get better slowly.
 
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