I know what you mean, Gabe had been sick for about 6-8 weeks, with about a week of me burying my head. I had him booked into the Dr's to test on the following Monday and he was in A&E on the sat night.
Blood sugars of 47.something.
They were trying to diagnose him with pneumonia before the peads registrar came down and when she did she was 1/2 way across the ER reading his notes asking if anyone had done a blood glucose test as she could smell ketone's.

I could smell them but had put it down to him vomiting all day.
His father can't smell them at all.

But anyhow we're on the go now...

up down up down up down.
4 teeth and a cold . Swinging between 23 and 2!
Very frustrating as and minor adjustment i make has wild effects.
Half a unit of Novo to correct 22mmol/l brings him down to 2 not long after.
all in the learning i guess.
I felt profoundly sad for James last night. I checked his sugar as he was sounding very restless in his sleep ans it was 2. But he was so hard to wake and not keen on glucose.he went up , but then straight back down again, so more force feeding. It is one of the few times since diagnosis i have really cried and cried
he is, of my 3, the happiest and till now the healthiest.
Its just not fuc#ink fair

I think the middle of the night stuff is the hardest and also when they are sick. I remember feeling helpless trying to get food into Rachel when she was low and so sleepy.
When Rachel was tiny we worked in smidges (the merest movement of the plunger in the syringe)of Insulin rather than 1/2 or even 1/4 units. Also we found that Novo was too hard and fast for her, and we had less swinging using Actrapid (regular) until she was older. Teething always affected Rachel and still does so I can't wait until the last of the 6 yr old molars are through.

It does get easier!! Hang in There!

I'm off to the Diabetes Youth NZ Conference in Nelson next weekend (YIPPEE) - anyone else going from here???

thanks, i will try actrapid. Had gone home on dosing novo post meal,then levelling out to just protopane 2 x a day. But the last few days with 4 teeth coming thru thing have gone mad again.
what age did you get Rachel on to a pump?, Funded? Pros? cons?
thank you
:D"D"D

Protophane could explain some of those ups & downs - it's a bumpy ride on Proto, especially for kids. Wonder if you can get on a more straight level background insulin? No fun having to change I know, but proto is really hard to get balanced numbers with.

Also be careful correcting a high too soon after the original injection - it can take 4 - 5 hours for novo to fully stop working.

Teeth wont help! Any kind of pain or illness can play with the BGs. Test test test... it's the only way to get control.

Hi Eloise

Chiming in re pumping. Matt has been pumping for nearly 4 years.Although he is older I would pump a toddler in a heartbeat.It has the ability to dose in tiny amounts. Getting away from shots was a blessing for him. Teenagers graze as often as toddlers so you just bolus as they go. The only con is the cost- approx $250 month There is the Animas ping Which alot of toddlers use in the USA as it has a remote controller. I don't know if it is available here yet but the previous model is here(2020).Good luck with managing a toddler.
By the way Matt still swings from 2-20 but for now i have to stand back because apparently I nag

Rachel started pumping age 4. We had to travel to Starship twice, once for a pre-pump assessment and then for our pumpstart, as Rachel was the only child who had started on a pump from our area (Taranaki).
There was no pump funding available for us so we bought our own, but our DHB has funded some consumables for us.

Pro's: Ability to give minute doses, increase/decrease/suspend background insulin. 1 set every 3/4 days rather than 3/4 per day. Easier for caregivers and school to dose by carb count (I label everything) rather than work out sliding scales etc as the pump does all the maths. Lots of safety features, alerts and reminders with the pump.

Con's: Loose or kinked sets can cause loss of background insulin quite quickly and ketones can build up. We've had that happen once in nearly 4 yrs. Rachel also has to wear her pump continually, but for us it has turned out that it is a comfort to her and she HATES being without it. A bit like a favourite blanket I suppose. Cost - although we haven't had to buy many supplies.

hiya,
jane and mattsmum, what kind of pumps do you use and why did you choose them?

Jane, have you ever had any issue with the cannula being dislodged or other kids pulling? What was control like prior to Rachel having a pump? Thank you so much for your help

Mattsmum lol, nag? mothers never nag, just strongly suggest.

emnz, thanks for the suggestions. I try not to addin extra novo more than once a day, and half to quarter a unit seems to be more than enough, less would be better!

have great week and every one

Hey all

Em they can change to lantus but you have to prove a long period of hypo or hyper glycemia caused by being on proto, as lantus isn't funded.

We were kinda lucky in that Gabe's day care was doing such a bang up job of shoddy care that we were funded he's been HEAPS happier since being on lantus.

I've talked to his nurse ed about getting some info on pumps and one of the things that he said was that (and this is in welly bear in mind) they don't like to put young kids on pumps as there is more risk of them pulling out the pump site and fiddling and playing with it.
There is also no pump funding down here, so it might be a while since it's ruddy expensive to buy one if we looked at going down that path. He was saying to expect in the $8,500 mark

Eloise Gabe ended up on diluted insulin right near the start, he would have been getting about 1/8th of a unit. if that.

We have a sick little boy at the moment
which is hard, he's happy to drink as he's got a chesty cough but not all that interested in food, but he's more resistant to insulin, but seems to be coming right.

We have an appointment to learn carb counting tomorrow, which should be good, as hopefully it'll mean the ex will actually do thing correctly and Gabes blood sugars wont be all over the place so often.
His problem is that he doesn't know how much insulin to dose so tends to Gabe an hour or so after eating and then dose a correction rather than giving a dose with his meal.

Interestingly we've never had a problem with novorapid.

I have how ever had a problem with hypos and once had to physically force glucose down gabes throat (disolved into water) so he came up enough he could be reasoned with to have the rest and then something to eat.


i looked at going jane to the conferance, but couldn't afford it so have to sit this one out.

Hi,

I am kind of new to this ...

My 22 month baby girl has just been diagnosed with Type 1 at Starship. Insulin, injections, glucose testing and the guilt is all overwhelming.

Does anyone have any tips on when this pain/guilt subsides?

Also, I haven't had any appointments with Dietitians yet, so I am flying blind. What are the best things for the littlies to have for M/Tea, A/Tea and supper.

Thanks

Hi Taznunu, Welcome to the club that no-one wants to join. It DOES get easier and I agree it is all very overwhelming at the beginning. Is your daughter still in Starship?
You shouldn't feel any guilt as nothing you have done has caused your daughters Diabetes. As for the pain - it still hits sometimes and we're 7 years in this month

I can't even remember what 22 month olds eat! Let alone what Rachel used to have. She should still be able to eat anything that she was having before, just keep anything high GI and fast carbs down. The Dietitian should have much more info for you.
I really recommend the book "Sweet Kids - How to Balance Diabetes Control and Good Nutrition with Family Peace" by Betty Page Brackenridge if you'd like some reading.

Alpha - I hope Gabe feels better soon. Lantus is now subsidised so available on prescription the same as any other insulin.

Eloise - We use a Cozmo pump and it has been brilliant, but there have been 3-4 models of the other pumps released since we bought ours. I think there is very little to choose between them. Maybe Animas would be better for a little fellow because of the smaller basal rates, but they all do pretty much the same thing, just different bells and whistles. ANY pump is a good pump and they all offer great 24 hr service and 4 yr warranties.
Rachel did really well on Lantus and Novo/Actrapid mixed at mealtimes but she absolutely hated injections (I recommend an InjectEase for small kids ). No other child has ever touched Rachel's pump and the only time it was pulled out was when I lifted her shirt over her head and caught it myself. We had the tubing break away from the pump once - I don't know why - but with regular testing any missed insulin is soon picked up.

Rachel has always treated her pump with respect and 'awe' almost - she knows how very important it is to her and she has never fiddled with it or pulled out a pumpsite. We still keep it locked so no buttons can be pushed accidentally.

Phew - 10.30pm, Rachel is 7.6 and I'm off to bed

Thanks Jane...
We had to get a special thingy for going onto Lantus, but it might have changed since we started it, in the last 3 months who knows.
Gabes almost better.
Well his bloods are stabling now again which is good.
and we can go back to normal doses of everything
Interesting with what you say with the pump. I'm just not sure a 3.5 year old boy is ready for it. But as i said still something we're collecting info on.

Taznunu: Welcome. as Jane said to the club no one wants to join ... The guilt will subside as you get further through the acceptance phase ... Did they offer for you to speak with a counciler?
I know we were when Gabe was diagnosed.
It might help.
It's hard though but as Jane said you didn't cause it, there wasn't anything you did or didn't do to cause it.
As for eating. We didn't change anything Gabe ate, at all.
But the dietitian will be able to help heaps in that area.
Also keep talking. It helps.
We're all here to help/support.
I found I don't talk to other parents about the problems with it as they just don't get it.
*hugs*
It's 2 years down the track and I still feel sorry for him. and Know that there are harder years to come.

Anyhow must go get myself breakfast and another coffee

Thank you Jane & Alpha for your comments.

It is nice to know that there is support out there ... especially in NZ. We were discharged from Starship, just recently, and this flying solo thing with out the support of the nurses at the push of a button is a bit scary.

We experienced our first hypo the night we got home at 3am, which wasn't pleasant. Since then Hayley has had a few hypo's especially after she has had her nap, but she has been within range 7.5 & 8.5 before going to sleep. So that has thrown us. Doc's think that she must still be producing a bit of her own insulin still. I am glad for the daily chats with the Diabetes Specialist team at Starship ... it is comforting at times.

And now that I have been introduced to this forum, maybe now I can be armed with more knowledge and be stronger for my baby.

Hayley turns two in just over a month. Does anyone know of a good ... dare I say it "Chocolate"cake recipe ???

Thanks ... and forever grateful

Hi taznunu

can really identify with your feelings, James was discharged from starship 3 1/2 weeks ago. Things getting easier already!
starship team amazing and so supportive.
I use good old edmonds cook book! add up total carbs and work out portion size and wrap and label Have found that much easier and keeping things 'normal' for the other kids.
James has alot of night hypos and have found carrero glucose sachets great
he also goes low after nap, so try to feed yog, kumara and low gi type foods that last longer
will put up recipies tonight
hugs
tash

Taznunu, we just feed Gabe as he was always feed and dose insulin based on what he's eating.
There are somethings I change like if I make Jelly I'll use the weight watchers stuff as it doesn't push as high.

So my 2c worth would be let her eat cake
let her be a normal 2 year old.

We have a meeting today to learn carb counting.
Although I'm not sure why they have left it for 2 years, I mean aside from that we have been doing really well estimating insulin doses which has worked so far for us but it'll be nice to get a better idea and better for Gabe father since he just doesn't get it.

But anyhow.

hi all

any one had any issues with medicines?
James has ear infection and conjunctivitis AND teething so i know this will pushing his sugars up. But have thought after fenpead it is very very high, as in reading HI on meter. Says sugar free but glycerol has carb component. phamacist wasnt sure if it would push it up so high with only 5 mls. Any way.

Alpha, how did dietcian go?

Tash

Eloise, being sick and the likes they become more resistant to insulin so need more, I know Gabe needs about 15-20% more when he's sick ontop of his normal dose.

The dietitan went well. although I do a better job guestimating what he needs than using a carb count.

And I couldn't seem to get through to her that what a carb count should tell me to give him for a musli bar (For example) is WAY off.
According to her info I should give him either 1 unit (at 1:25) or 2 Units (at 1:15) ratios for a muslie bar BUT i know through personal experiance that he needs approx 5/5.5 units for a muslie bar.
So in short I'm not sure how well this is going to work even once we find the correct ratio. We're starting at 1:25 but I don't think that's right i think he is closer to 1:15.
So his results are going to be crap for about a month while we get it sorted. BUT I have worked out that he's at a 1:6 for correction which is a good start.

Any thoughts or suggestions from those of you who know more about carb counting?

I have found that even with the lowest GI food Gabe peaks really high really quickly and then sits high for AGES (which strikes me as not being the point of low GI foods) ... if that makes sense, someone needs to tell my boys metabolisim what the meaning of low GI is (his daddy was the same as a kid)

thanks ahpha

he has only 1 unit at night and 4 in the morning so any increace is pretty significant,and he still goes down over night so rapidly even when sick

That's protophane I take it not rapid?

yeah, i assume he is in honeymoon as prior to being sick the last few days just those few units of protophane were doing it, and even then still having lows!!!!
But last night 27! have anti biotics , eye drops and neurofen for kids now which the pharmacist swears is not sugar related.And I increased proto slightly and gave 1/4 novo
And most importantly glass of wine for me!
Sounds like you were managing really well with out carb counting. Do you think it will help long term

Taznunu, you still hanging in there? did the starship team give you detail of a pre preschoolers with diabetes meet up?

Tash