Author Topic: nephew diagnosed Type 1  (Read 1491 times)

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Offline vickiT11979

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nephew diagnosed Type 1
« on: 19 August 2013, 08:10:12 PM »
Unfortunately my 4 year old nephew was diagnosed with Type 1 last Wednesday. Luckily he wasn't ketoacidotic at all, but had been drinking loads for a few weeks & had a venous glucose of 47mmol/L on admission to hospital. My sister just hadn't twigged - she says she never considered that either of her boys might get it & had thought the thirst was due to the hot weather. He's hardly lost any weight & had been acting normally so that threw her off the scent as well.

Anyway, he's been put on MDI & they're carb counting. They've been told to try to keep his diet pretty much unchanged to start with, then gradually shift him to the "healthy eating plate". They have correction ratios & insulin to carb ratios to work out bolus doses. I went down to visit on Saturday & he was eating fruit smoothie & lots of cereal for breakfast (she says 90g carbs), and mashed potato, meatballs & a chocolate biscuit (no veg) for lunch (she says 40g carbs). His BGs are running high - he was 16.1 before breakfast, 27.6 before lunch & 12.9 after lunch when I was there but the rest of the records are mainly over 14.0. On that day his bolus doses were much larger than his basal doses - he'd had 9u bolus by afternoon with basal of 2u.

I know it's early days, they've got good support from their local hospital & since i was there they've increased his basal dose from 2u to 3u & can go up to 4u if they keep needing to do lots of BG corrections. His insulin to carb ratio was 1:20 but has been changed to 1:15 for breakfast now.

Please can anyone with experience say how long it might take to get things reasonably stable?

I gave them lots of info when I went down - maybe too much - went on about basal:bolus split usually being about 50:50, maybe 40:60 in children, and about insulin resistance in the morning & that you can really reduce complications by good control. I stabbed myself with an old novopen & did a few BG tests with him, and he seems to be coping reasonably well, though he isn't keen on any needles of any kind & keeps asking if he'll still be diabetic tomorrow  :'(.

Type 1 since 1979, Addison's disease & hypothyroid 1998. HbA1c Nov 12: 54/7.1%, Feb 13: 53/7%, 46/6.4% April 13.
Cholesterol 6.2, HDL 3.1, trigs 1.4.
On insulin pump since 2009, now Animas Vibe & CGM, thyroxine, hydrocortisone, fludrocortisone.
Did have background retinopathy until a year ago - none seen on last 2 retinal screens!!

Offline kellyahayes

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Re: nephew diagnosed Type 1
« Reply #1 on: 19 August 2013, 09:43:54 PM »
Hi there, sorry to hear about your nephew. My DD was dx aged 3, she's now almost 7. We were started on novomix twice daily to begin with. It took several weeks to get her levels steady but there is always something to throw it as u may know such as growth spurts, activities, illness ect. We moved onto mdi and carb counting about 2 yrs later which was so much better, again it took a while for it all to fall into place. And just recently she is now on a pump which is even better for her. We were never really advised about diet and 90g carbs for breakfast seems a lot. Even now my daughter only has around 30g for breakfast. The dieticians just made sure she had some from each food group but not specific amounts. My DD was in very bad dka on dx and looked so frail, its amazing to see how much she has bounced back and handles her diabetes.
Mum to T1 diabetic daughter diagnosed dec 2009 aged 3, now aged 6
Pumping novorapid since 12/3/2013

Offline Liam

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Re: nephew diagnosed Type 1
« Reply #2 on: 19 August 2013, 09:46:37 PM »
I'm pretty sure his team will have started in on the low end of dosing and will have a lot of contact and will up his does pretty rapidly. At least 17 old years ago that is what happened to me. I saw people weekly for awhile and they called my mum often and she called them.

I was older so just got told 'this is for the rest of your life' kind of thing. I guess over time he'll get used to it.   
DX Type I 1994.    Novorapid Animas Vibe pump
HbA1c 3/10 10.2%, 7/10 8.1%, 12/10 7.5%.
2/11 7.8%, 8/11 8.6% 9/11 8.3%.
3/12 62 (7.8%). 10/12 67 (8.3%)
4/13 63 (7.9%) 6/13 59 (7.5%)
1/14 71 (8.6%) 7/14 59 (7.5%) 11/14 (6.7%)
3/15 56 (7.3%) 12/15 49 (6.6%)
Ramipril: 10mg Quetiapine: 550mg Metformin: 2000mg

Offline Pattidevans

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Re: nephew diagnosed Type 1
« Reply #3 on: 19 August 2013, 11:04:44 PM »
Hey Vicki you are in the very BEST position to advise your nephew, being a T1 yourself and also being on the pump as well as your other qualifications.
Quote
They've been told to try to keep his diet pretty much unchanged to start with, then gradually shift him to the "healthy eating plate". They have correction ratios & insulin to carb ratios to work out bolus doses. I went down to visit on Saturday & he was eating fruit smoothie & lots of cereal for breakfast (she says 90g carbs), and mashed potato, meatballs & a chocolate biscuit (no veg) for lunch (she says 40g carbs). His BGs are running high - he was 16.1 before breakfast, 27.6 before lunch & 12.9 after lunch when I was there but the rest of the records are mainly over 14.0. On that day his bolus doses were much larger than his basal doses - he'd had 9u bolus by afternoon with basal of 2u.
His current diet seems a bit odd, perhaps you could steer them to a bit less carb?   I also agree that the basal is a bit low compared to the bolus.

I think he has about 3 months to sort it as most of us did.  I took 9 months but I had no real help when I was diagnosed.

I do feel for you and his mum... will she come in here or even www.childrenwithdiabetes.com which can give her lots of support!
Patti


Type 1.  Mis-diagnosed T2 May 2003, finally had CPeptide test 15/7/11 and proper diagnosis 1/9/11.  Now pumping Apidra with Roche Spirit Combo pump. Hba1c 6.1 April 2016.


© 2015 Patti Evans

Offline nytquill17

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Re: nephew diagnosed Type 1
« Reply #4 on: 20 August 2013, 12:36:35 AM »
It sounds like his mum, or perhaps the care team, or probably both, are afraid of hypos. Which is not unreasonable especially with such a young child! But I wonder if his mum has gotten so worried about injecting him with this rather powerful (in its way) medication and is overcompensating to make sure he's okay. It must feel very intimidating when it's all new.

When I was starting out, they sent me home with a meal plan - 30g carb per meal. I don't think I could stomach 90g even now, as an adult. Is that what he used to eat? Because that's what make me wonder if it might not be out of fear. Sounds like he might be a picky eater as well. I suspect Liam is right and they're starting him out slow while everyone gets used to it, will probably work to dial it in soon. When I was diagnosed, the protocol was to keep the new diabetic in hospital, learning how to inject, carb count, correct, etc. under supervision for two whole weeks before they let you out on your own! Of course that was 18 years ago and they'd never do that now, but the learning curve is still just as steep, so a lot of it happens at home with phone contact over the first few weeks. But definitely keep an eye out because it is a lot to cope with and they may have trouble taking it all in, especially without letting fear and anxiety take over.

My parents completely missed mine for months. Put the thirst down to me playing outside during the summer and the hunger down to a growth spurt. Our grocery store was an hour away (isolated community!) and it wasn't unusual for one or the other of us to need to stop at the halfway point, so no one really noticed when I started needing a stop every time, both directions. Wasn't until I went off to a birthday party that my friend's mother realized something wasn't right with me.  So I think it's not uncommon for parents to miss it! Sort of a boiling frog thing.
T1 DX 1995
Levemir + Novorapid
 
  ~-~-~-~
"If you can't ride, can you fall?"
"I suppose anyone can fall," said Shasta.
"I mean can you fall and get up again without crying, and mount again and fall again and yet not be afraid of falling?"
"I - I'll try," said Shasta.
  ~C.S. Lewis, The Horse and His Boy
  ~-~-~-~
"There is no answer; seek it lovingly."

Offline vickiT11979

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Re: nephew diagnosed Type 1
« Reply #5 on: 21 August 2013, 02:17:11 PM »
Boiling frog???
 
Thanks for your replies & support, she has said she's more afraid of hypos than highs & I appreciate the DSN doesn't want to scare them to start with so is taking things slowly.
They know I eat differently from them (I try to limit carbs & eat low GI stuff) but not the details of it. I don't intend to go into any of that until they've tried control on a high carb diet & had problems - they might be fine on it or if they aren't they might get offered a pump.

My sister's got to go to Hong Kong on Fri for a week for work, so is worrying, but I've offered to go again if they want. He starts school in 3 weeks so that's a challenge, and both parents work full time so their childminder needs to be taught everything as well. I think you can get parental leave for things like this, but don't know the details. Kelly, how did starting school work for your daughter?

I've given her some website addresses & will mention Facebook groups too, thanks Patti.
Type 1 since 1979, Addison's disease & hypothyroid 1998. HbA1c Nov 12: 54/7.1%, Feb 13: 53/7%, 46/6.4% April 13.
Cholesterol 6.2, HDL 3.1, trigs 1.4.
On insulin pump since 2009, now Animas Vibe & CGM, thyroxine, hydrocortisone, fludrocortisone.
Did have background retinopathy until a year ago - none seen on last 2 retinal screens!!

Offline kellyahayes

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Re: nephew diagnosed Type 1
« Reply #6 on: 21 August 2013, 05:02:30 PM »
Starting school wasn't too bad for us as she attended the same place for nursery doing half days. The dsn went in to give teachers training before hand and divised a care plan with them. Being on 2 inj at the time they didn't have to worry about that but once they did they were brilliant at learning and dealing with it.
Mum to T1 diabetic daughter diagnosed dec 2009 aged 3, now aged 6
Pumping novorapid since 12/3/2013

Offline nytquill17

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Re: nephew diagnosed Type 1
« Reply #7 on: 21 August 2013, 11:16:38 PM »
Boiling frog was meant to be shorthand for that old proverb or parable or whatever you call it: put a frog in a pot of boiling water and he'll hop straight out. Put him in a pot of cold water and slowly heat it and he won't notice he's getting cooked! (dunno how true that is as regards actual frogs though and don't want to know!)
T1 DX 1995
Levemir + Novorapid
 
  ~-~-~-~
"If you can't ride, can you fall?"
"I suppose anyone can fall," said Shasta.
"I mean can you fall and get up again without crying, and mount again and fall again and yet not be afraid of falling?"
"I - I'll try," said Shasta.
  ~C.S. Lewis, The Horse and His Boy
  ~-~-~-~
"There is no answer; seek it lovingly."

Offline vickiT11979

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Re: nephew diagnosed Type 1
« Reply #8 on: 23 August 2013, 10:15:12 AM »
Ahh, thank you  ;), and thanks for your reassurance Kelly  :).

Think they're settling into the "new normal" now, getting some readings below 10 & feeling a bit more confident with it so things are going in the right direction  :).
Type 1 since 1979, Addison's disease & hypothyroid 1998. HbA1c Nov 12: 54/7.1%, Feb 13: 53/7%, 46/6.4% April 13.
Cholesterol 6.2, HDL 3.1, trigs 1.4.
On insulin pump since 2009, now Animas Vibe & CGM, thyroxine, hydrocortisone, fludrocortisone.
Did have background retinopathy until a year ago - none seen on last 2 retinal screens!!

Offline kellyahayes

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Re: nephew diagnosed Type 1
« Reply #9 on: 23 August 2013, 11:50:14 AM »
They will become more confident and time goes on and will learn what factors effect his levels. Recommend the carbs and cals book, that is our bible!! There are some Facebook pages I belong to that offer a wealth of knowledge for dealing with kids and diabetes.
Mum to T1 diabetic daughter diagnosed dec 2009 aged 3, now aged 6
Pumping novorapid since 12/3/2013

Offline Pattidevans

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Re: nephew diagnosed Type 1
« Reply #10 on: 23 August 2013, 11:50:24 AM »
That's very good to hear Vicki.
Patti


Type 1.  Mis-diagnosed T2 May 2003, finally had CPeptide test 15/7/11 and proper diagnosis 1/9/11.  Now pumping Apidra with Roche Spirit Combo pump. Hba1c 6.1 April 2016.


© 2015 Patti Evans