Diagnosed As T1 After My Daughter

[jharding]

I have a bit of an unusual tale.

Three years ago, my five-year-old daughter (now eight) showed a few signs of diabetes - excessive thirst while on holiday was the main one, and although the blood glucose test with my type-2 diabetic father's spare meter showed her blood glucose was a little elevated it wasn't really high.

A few days later, the GP and then Hospital confirmed that she was type-1 diabetic and a few weeks later we got the insulin pump replacing the injections. We've lived with the condition (and another autoimmune) with her for almost three years.

Last month, I had a the tiredness and excessive thirst on the hottest day; not unusual but it triggered an alarm bell. I used my daughter's spare monitor, just to check, and my sugars were 24.0. Ketones were 0.5. An out-of-hours GP appointment said I was T2 the following day and three days later, I was diagnosed properly as T1.

I am now insulin dependent.

I know there is some research around T1 and whether it is genetic; we now know the wonky genes that my daughter inherited, but we thought my susceptibility to T1 should have showed a long time ago. I am 35 in November.

 

[therower]

@jharding. As a lot of people on the forum will testify T1 can strike at any age. I was 27yrs old with no history of any diabetes in my family whatsoever. I have met fellow T1s diagnosed in their 50s.
It is unusual to be diagnosed later in life as T1 but not unheard of.
Hope you and your daughter are managing OK and good luck.

 

[azure]

@mahola and her daughter were diagnosed very close together, I believe. That's just one example, but there are others here too.

Type 1 can happen at any age unfortunately. It needs an environmental trigger or triggers, as yet unknown.

Is the genetic type of diabetes you're referring to MODY? There are tests for that, but that would be something you'd have to speak to your consultant about to see if there was any reason to suspect that.

I hope you and your daughter are doing well

 

[himtoo]

Hi @jharding
I just wanted to add a welcome to the forum

 

[fletchweb]

I have a bit of an unusual tale.

I know there is some research around T1 and whether it is genetic; we now know the wonky genes that my daughter inherited, but we thought my susceptibility to T1 should have showed a long time ago. I am 35 in November.

I can certainly relate to this - I was diagnosed when I was 4 - but my sister was diagnosed when she was 50 and she too is insulin dependent and I believe might be using a pump - not sure. I think it's more difficult for her and then it ever was for me. I can't remember a time I didn't have diabetes while my sister had years of being a non diabetic to reflect upon. When you grow up testing and injecting along with a specialized diet it just seems normal but someone who suddenly has to make those changes in their adult years. That would be tough!

All the best and don;t get too frustrated when or if you struggle with your BG Levels because we all do ....

 

[jharding]

@mahola and her daughter were diagnosed very close together, I believe. That's just one example, but there are others here too.

Type 1 can happen at any age unfortunately. It needs an environmental trigger or triggers, as yet unknown.

Is the genetic type of diabetes you're referring to MODY? There are tests for that, but that would be something you'd have to speak to your consultant about to see if there was any reason to suspect that.

I hope you and your daughter are doing well

Thanks. We're fine. It was the overnight stay in hospital that freaked me out. I am hospital-phobic and had a bit of breakdown before i went in.

I was diagnosed at 34 so MODY would be unlikely, would it not? And although I've been having hypos for 48 hours, in the four weeks before that I've adjusted my values so I've been pretty stable on the insulin.

 

[jharding]

Hi @jharding
I just wanted to add a welcome to the forum

Thanks

 

[jharding]

I was diagnosed 28th January 2016 when I was 31. My 11 year old daughter was diagnosed on 2nd February 2016. 5 days apart and I'd never had experience of type 1 diabetes. It was a bit of a smack in the face! Nobody else in our family has type 1.

Ouch!

We've had three years of living with the condition, although my daughter was also diagnosed with Neuphrotic Condition (another autoimmune) a few months after the diabetes and was on steroids and then chemo for that so we had awful trouble getting her sugars to be stable with the steroids.

My daughter has already started comparing my sugar readings with hers at the dinner table.

 

[himtoo]

Ouch!

We've had three years of living with the condition, although my daughter was also diagnosed with Neuphrotic Condition (another autoimmune) a few months after the diabetes and was on steroids and then chemo for that so we had awful trouble getting her sugars to be stable with the steroids.

My daughter has already started comparing my sugar readings with hers at the dinner table.

awww bless you @jharding
have just read about the nephrotic syndrome and that alone does not sound very pleasant-- do try and keep posting here -- it is a great community and I am sure we will try to be there for you and your family when needed .
and in time your experience could help others too !!
take care
all the best !!

 

[jharding]

awww bless you @jharding
have just read about the nephrotic syndrome and that alone does not sound very pleasant-- do try and keep posting here -- it is a great community and I am sure we will try to be there for you and your family when needed .
and in time your experience could help others too !!
take care
all the best !!

Neuphrotic syndrome is essentially where the kidneys excrete protein so when my daughter first showed signs of something being amiss she had a huge belly and thunder thighs like she was in a fat suit - she had gone from under 20kg to 25kg in less than a week through water retention. She spent nine days in hospital on steroids.

We now know that the two conditions together are extremely rare - as in low single digits of kids in the UK.

Every time she got clear of the neuphrotic syndrome from steroids (stepped down in dose) she would relapse, which is why she went on the chemo drug. We've been clear for about a year, but she's been on a low permanent dose for most of that time. This will be the first winter when she's not on or been on any type of steroids for three years and all her other relapses were triggered by a cold so we do expect a relapse and have protein strips to test her wee. (Joys of parenting)

The only upside to this, was that on school sports day first time round she aced everything; she had been on adult dose steroids for eight months and she tore up the field quicker than kids three classes above!

And as for the hospital; Macc Hospital Childrens' Ward was fantastic. The Neuphrotic Syndrome was not a new condition for them, but combined with Diabetes was very much so. But they took advice from Manchester and I remember when she was in for the nine days, I spent a lot of time with a trainee nurse and I felt as though we worked out her diabetes together.

And 95% of children outgrow Neuphrotic Syndrome so here's to hoping.

But steroids and diabetes is scarily difficult. I doubt we would have managed without the pump.

 

[himtoo]

your post is pretty much what I read on my search
just give your daughter a hug from me and tell her she is the bravest and most wonderful girl on the planet
xxx