Kiwi Introductions

[kiwikid]

How about an informal introduction session? exchange stories tips and ideas, and see if anyone wants to meet up anytime if we happen to be in your area etc? :cwds:

I know theres MelStan, IvansMum, monkey97, Hockey7, kiwimum out there - ? anyone else.

My name is Jane, my family live in the backblocks of Taranaki. I'm heading to my first Diabetes NZ conference in Hamilton next month (very nervous), is anyone else going?

Rachel started pumping Jan 06 with a Cozmo pump, I see other kiwi familys are starting this month and the next - pumping is really taking off here - now we just have to get the Government funding on track. ;)

It would be great to meet you all. :D

[hockey7]

Im Karen...and live in Howick Auckland...My son Mattie was diagnosed just before his 2nd birthday...at the begining of the year I started thinking about a pump ..and we now have a pump start date of 14 May....on the brand new Animas 2020...well actually we are starting on the 1250 but are getting upgraded in July...when its released in New Zealand...Im looking forward to that as Mattie always has high blood sugars at night and wakes with Ketones most mornings...you may think to give him some more insulin...but 1/4 of a unit makes him go low...so the 0.025 the Animas lets us bolus is going to be great...

Hope to talk to you again soon...Im sure I will have a million questions for you..


Karen mum to Mattie dxd 0/5 aged 2 now aged 4....:p

[kiwikid]

Hi Karen,

Its great to see you are going to be pumping come May. And interesting to see that the 2020 is getting here so soon. We're looking forward to our Cozmo upgrade hopefully around the same time. :)
Rachel always had small ketones in the early morning no matter how we adjusted her insulin. Pumping has really helped and Rachel uses a higher basal rate overnight(0.30 from 10pm until 5am) than through the day (0.10 and 0.05 through the morning and afternoon).
Hopefully you will get things sorted really quickly, and find Mattie has a huge new burst of energy as Rachel did once we got the overnight numbers sorted.

We're off to stay in town tonight and then catching a Diabetes Youth Mystery Bus Trip tomorrow morning. Rachel is really excited as shes never been on a bus before :p not even a school bus!

[Ivan's Mum]

Well I know you jane and I know Karen well (or as well as people who've known each other a few months and pulled pumps apart together). I've chatted with some other kiwis (I think).

I think if we can get the others on board we should have a get together sometime. Even if only for the Xmas at the Zoo (Jane the offer still stands to bunk down here... we're not that weird... well not in an obvious way anyhow)

On with the pump pack production line.

[kiwimum]

Hi All, kiwimum here, aka Debs. Been keeping my eye on this particular forum and it's nice to see that someone has finally posted something. I am really new to all this and it's great to "chat" or "eavesdrop" on others with a bit more experience.
We are in West Auckland and are always keen to meet anybody who knows what we are going through. Tyler is only 20 weeks into the diagnosis and although things are great most of the time, we do have our moments!
I'll keep my eye on this particular thread and go from there!
Cheers, Debs

[hockey7]

Hi Debs....

Great to chat....I am in East Auckland Love to meet you and catch up...I remember when Mattie was dxd 2 years ago I met up with two other mums who had children with D...and it was fantastic I still talk to them,,,its a great way to make friendships as we all have something in common... How old is Tyler? and how is he coping?.....

Catch you soon


Karen mum to Mattie dxd 03/05

[kiwimum]

Hi Karen, great to hear from you. Tyler is 11 and was diagnosed on 29th November 06, one month after his birthday. He has an older brother Sam and my husband and I thank god everyday that it wasn't him! He would be on his deathbed now waiting for the world to end!
Tyler is coping great. He has a few bad times when he doesn't want to eat or there is nothing that he fancies. Most of the time it is just a habit. My husband and I have also encouraged him to be very public with it all so as a result he has no problem "shooting up" where ever we may be. And if people want to look that's fine, if they don't, they can turn away. From day 1 we have made it clear to Tyler and all our family that it is not a dirty little secret to be ashamed of.
My husband and I on the other hand were devasted at the diagnosis and even now have the odd day when it all seems too much. I blame myself because I have graves disease and pernicious anaemia which are both auto immune and I think I have passed on something to Tyler.
All in all, things are going okay, but as you know it is a real learning curve and just when we think we have it all sussed out, things go all out of whack and we have to dive for our parents manual!
We have met one other family that we keep in touch with every now and then. But I would love to meet others. As good as friends are, I don't want them to get sick of me bleating on about our lives and how stressed things can get with the diabetes. And I must say that friends and family have been awesome and supportive but at times they just don't get it.
Any offer of friendship and support is appreciated, not only for my sake but for our family as a whole. I know there are others out there, but the nature of the disease and the fact that it is not as common as people think can make one feel quite lonely at times!
Anyway, enough with the novel! Look forward to hearing from you.
Debs
Mum to Sam, 13 and Tyler, 11 dx 29 Nov 06

[MelStan]

Hi everyone!

What a great idea Jane:)
Well, for those who don't know me.. I'm Melanie. We live in Southland.
Eilish is nearly 10, and was dx'd 3 weeks after her 3rd Birthday. We started her on a pump (Cozmo) in Sept 2006, and are delighted with it!
She's the first child in Sthland to use a pump, so it's been a bit of a learning curve for us all. We're still struggling a bit to get things sorted, especially overnight basals, and we're really exhausted with all the overnight testing we've been doing, but would never go back to the old way!

It's great to see a few Kiwis using this forum, and I look forward to getting to know those of you I don't already!!

Mel

[hockey7]

hi Mel


Its such a cool idea to set this Kiwi Chat up....and good to meet other parents in the same boat...Mattie is starting on May 14...He is 4 and Im hoping the pump makes night time a lot easier..Its hard work in our house as he is so unstable in the night especially between midnight and three so Im really hoping changes that.... I guess we will wait and see!!!!!

Nice chatting:)

[MelStan]

Hi Karen
Nice to meet you!:cwds:

I'm sure you will find the pump will help in that way for Mattie! I should mention that Eilish is definitely going through puberty, and I suspect that's what's throwing everything out (well, more than usual;) ). Things were a lot more stable and predictable when we first started from memory, but we just didn't get long at it before things seemed to start changing big time. We've been told that growth hormones affect bgs an hour or so after kids go to sleep, so we've been increasing her basal between 9pm and 2am. Sort of getting there, but she just doesn't seem to be terribly predictable I'm afraid:rolleyes:
Anyway, i'm sure you'll love the pump like we do. There's really no comparison.
Which insulins is Mattie on now Karen? Eilish was on humalog and nph, which we just hated!

Good luck with the pump start!! Not long to wait now:D

Mel

[hockey7]

hi there

Mattie is on Lantus and actrapid but his numbers arent that good we usually are within range up until about 2 oclock then the haywire starts!!!!! so really looking forward to the pump start....Did the Sothland hospital fund your pump or did you have to raise money....we have had to raise the money...I wish the darn things were government funded or even just the consumables that would be a great help...I think I might write a email to Pharmac with Matties story I wonder if they would read it!!!:o

[Ivan's Mum]

We start pumping on Monday morning... wish us luck and keep everything crossed.
Ivan's wearing the tubeguard.. thanks Jane. Think we've lost one already, though it will probably turn up in the washing machine.
Can't bloody wait.... am excited. Now for the hard work. He'll be eating big slabs of chocolate cake by his birthday! (as will I).
To the others, I love in Howick, Auckland, near Karen who I chat with all the time.

Will keep you posted re pump developments.

[kiwikid]

Good Luck for Monday - I hope it all goes smoothly!!
we'll be here waiting to see how you are going:cwds:

[MelStan]

Karen, we were very lucky to get funding from Variety (they covered the entire cost of the pump) and we got $500 from our local Lion's Club to help with consumables. But we're struggling quite a bit now, and I'm very disppointed with our DHB, as they've refused to give us any help (from the Ped Pump Funds) as they think our Child Disability allowance should cover it!!!! Doesn't even come close!
I'm thinking about writing to Campbell Live, and maybe a few other places to see if they'd be interested in maybe doing a story. Anyone else interested in adding their piece?
I too am really annoyed that there isn't more help from Govt with these costs. I'm sure if people understood more of the ins and outs of T1, then we'd be more likely to get some funding.

And 'hi' to Fransesca too:)
Good luck with the pump start!!! We'll be thinking of you:D

Mel - mum of Eilish, 9 3/4, dx'd at 3 (Pumping Cozmo)

[kiwikid]

We had to pay for our own pump :( . They had a big fundraiser for pumps at the Starship foundation "Night at the Park" or something similar a month or 2 back - do you know who got those pumps? Didn't they raise about $40,000??? Also there is a yearly "Pump Up The Volume" which raises funds for 3 Cozmo pumps for kids.
I am going to the DNZ conference in 2 weeks , I'm really nervous and I'm sure I won't utter a single word, but it will be interesting to listen to the speakers about funding etc.
We met with Adrian Coombe (president of DYNZ) on our mystery bus trip and he said the whole D week this year is about Kids with Type 1 D. (next year its Youth and will have to cover Type 2 as well) Hopefully the DY AGM part of the conference will focus on getting these sorts of funding ideas across to the Govt.
My understanding is that while some DHB's will fund pumps, and some will fund consumables, then the Govt is sitting back and saying that they are leaving it to each DHB to fund whatever they want.
We have a capped amount of consumable funding here in Taranaki to be shared between all the pumpers there are. At present there are only 3 so we're not doing too badly. If 10 more start next year then the amount will be pittance. I'm not complaining though, I know we are better off than some :cwds:

[Ivan's Mum]

We'll you've probably all read about my pumping disaster. Jane knows, thou what's she doing up at this hour I don't know, the girl is a night owl or a vampire... the finger pricks have me concerned now.
Starship give us 6 months worth of supplies when we start (thou that might just be needles, I've not opened the boxes yet) I'm trying to raise funding with various groups. Maybe we should just get ourselves a pumping collective and either A: buy in bulk together or B" (and I'm liking this one) get some funding proposals out to get us a large chunk of sponsorship.

However,if we never get back on the pump.... you're all on your own.:D (though I might we getting rid of some infusion sets on trade me if you're interested LOL) kidding, Starship would cross me off their christmas card list.

[kiwikid]

Oh I LOVE TradeMe for a good bargain :p
I think the only place we can lobby is the govt (Pharmac). They are using the "DHB funding initiatives" to back out of it themselves. If we find our own sponsorship then some families will be left out again. It has to be proven that we will save the Govt money in the long run with better control for our kids.
We can't get Carer support down here either which is an ongoing battle - some DHB's took it on, some didn't. Its now in the hands of the Human Rights Commission to provide Equality to all families.

I was a Vampire in a previous life - prior to the kids of course. People often see me in the street and say "I know you - you took my blood" :rolleyes:

[Ivan's Mum]

Well that's just plain rude that you can't get C.S. who can I write to on your behalf. It's just wrong. I feel that we should lobby some MP's or something. I must say I was thinking of talking to my local to see if something can be done. We pay all this money in insurance and I get told that if I take Ivan private for a visit to an endo that I won't be able to go back to the starship team. There is a no cross over policy. This is NOT what I pay my taxes (or go without to have medical insurance) for.
I think that when the Diabetes awareness week comes up this year we should approach Cambell Live to do a story about it. It can cover what we get from the government as 'pumpers' and what different health boards offer.
I feel a crusade coming on.

[hockey7]

I could have told you this on the phone but then nobody else would read it!!!! totally agree...I defintely feel a crusade coming on...we need to go to either Close up....I have a contact one of my friends is a journalist there...or Campbell live ...Do we need to wait for diabetes awareness week or can we do it sooner...hopefully if we could all put our stories on email...Fran the fabulous writer could write something collectively..(you see why it cant be me I cant spell!!!!) and ship it off to both stations...see which one shows the most interest..and get them to bring in the Health minister and challenge her face to face...I feel diabetes is not something we choose and we should defintely be supported in getting the best care for our children...better than the hundreds of thousands they will be paying in years to come to treat all these children that have long term side effects....and Im sure we all have paid our taxes and our husbands pay taxes...I think as parents of children with a lifelong disability we deserve answers..

Anyway off to bed now..Ive tired myself out thinking about it...

[MelStan]

I think we really should do this. Should we see if everyone in the same boat on the email list would be interested in joining with us? I know of one Mum who has already written to Campbell Live on the subject, but didn't get a response. But perhaps if we all write some pretty heated emails, they might look into it?
It would make a good 'story' for them too I think.
Lets do it!! The squeaky wheel gets the oil...or whatever the saying is!

Mel- Mum of Eilish, 9 3/4, dx'd at 3. Pumping Cozmo, and still going horribly high at night:(

[kiwikid]

Diabetes Awareness Week this year is our big chance to get it out there for our Type 1 kids. I'm looking forward to conference and hearing DY's plans for that week. I'm happy to pass on your ideas if you let me know them. DYNZ are the ones who have instigated the discrimination case in the Carer Support, so they may have news on that too.

Rachel is lying on the sofa with a temp of 39 c, shes been low all day even with an 80% temp reduction and I'm dreading what will come next.
We tried a "Cleo" on Weds afternoon after her Rapid D just "popped out" and its been great so far though very fiddly to disconnect. I'm going to change it tonight and try to get back in 'site change' synch for my weekend away - hopefully she won't be for sick too long and I'll actually manage to get there :rolleyes:

[kiwikid]

There's a thread on this forum http://www.pumpitup.co.nz/ about fundraising (or trying to) for pumps and consumables.

[hockey7]

The big day is nearly here...Monday morning 9.00 hopefully we will start pumping I keep telling Matt one more sleep but his 4 year old mind doesnt have a clue what hes in for....apart from the fact I keep telling him no more morning injections....

Wish us luck....Ill let you know how Matt goes..:)

[kiwikid]

Good Luck!! I hope it all goes smoothly for you :cwds:

[DylansMum]

Hi, I am Kim, mother to Dylan who was dx'd May 06 at age 7. Cannot believe a year has gone by.
Dylan is coping really well, more so than me initially, but now it is like a normal part of our lives.
He has had two seizures since he was diagnosed, one last August, and one about 6 weeks ago. However the drs are not sure whether his last seizure was related to diabetes, although it was almost identical to his first seizure which they did say was diabetic related. He is back at Auckland hospital tomorrow for another EEG , then on Tuesday to see the Paed clinical director at the outpatients at Starship, and then on Friday he is back to his normal clinic check up with his Endo Specialists at Botany.

All in all a busy week!

Kim

[hockey7]

Hi Kim... You must be close to me as Botany is our closest clinic to....Just to let you know we are starting up our coffe mornings on the 1st of july at the driving range in Orministon road it has a fab cafe there....what school does Dylan go to....good to hear from you

:):):)

[kiwikid]

Hi Kim,

Its nice to meet you! I hope you find answers to Dylans seizures. They are pretty scary aren't they. You do sound as though you have a busy week.
I seem to spend my weeks running from school trip to after school activity to town etc.
Catch up with you later.:cwds:

[Ivan's Mum]

We're at the Bot clinic on friday 8.30 am - first in the door! As little time off school as possible. It's mufti day after all and then Ivan is giving a little talk at school assembily (spelling!) and I'm just hoping that he doesn't add any armpit farts to the end of it (the possibilities go on and on if he's high). Am thinking of talking lantus this friday - anyone else got thoughts about it. Not sure if I'm reliable enough to deliver it at the same time every day!

[kiwikid]

Hey Fran! Be Careful - Aren't you happy with whats working for you now?? :p

I loved Lantus - before pumping of course :rolleyes:
I used to give at around 9pm in the evening. It seemed to fit in then because if we'd been out we were usually home, Rachel was most often asleep so she didn't even know about it, and we had really good morning numbers with it.
Let us know how you get on! Will Ivan be keen on another trial, possibly with more injections?

Rachel loves her brother doing armpit farts (hes 14 so he does really good ones), but her latest goal is a handstand - both girls seem to spend lots of time upside down at the moment! :D

[Ivan's Mum]

was looking in to the lantus as Ivan has a def drop when the protophane kicks in and I don't think you get that with the lantus. Also, his morning injection is quite large (12 units in total) and can leave marks etc so the thought of only giving small injctions is good. I think the 9pm thing is a good idea, we're always around (have no life after all) and it's not at a time when everything else is goingon.

Still not sure really.

Have been having some great numbers. Have had to knock pm protophane back half a unit and am still having lows in the morning.

Why they don't teach you carb counting in the beginning I don't know. I guess it's all just a head spin but you feel so much more in control when you have a rough idea of how they're going to climb.

My new pet hate is dried apricots!

All well in our little world at present. Ivan is working at mastering the 'gun' fart which is where you pretend your shooting a gun as you pump the armpit. Very charming. He's his fathers son.

[DylansMum]

We're at the Bot clinic on friday 8.30 am - first in the door! As little time off school as possible. It's mufti day after all and then Ivan is giving a little talk at school assembily (spelling!) and I'm just hoping that he doesn't add any armpit farts to the end of it (the possibilities go on and on if he's high). Am thinking of talking lantus this friday - anyone else got thoughts about it. Not sure if I'm reliable enough to deliver it at the same time every day!

Hi, I was at Botany clinic today with my son Dylan, our appointment was 8.30am but we didn't get in to see the dr into about 9.30am.
We are going to try Lantus, but we have to wait until they get the approval so we can get the insulin a lot cheaper from the pharmacy.
Dylan had his EEG on Monday, and all was clear, so they are keeping a close eye on him.

Had a rough week, my 14 year teenage daughter decided she would wag school, and being having countless problems with her.

Hope you have a nice weekend.

[DylansMum]

Hi Kim... You must be close to me as Botany is our closest clinic to....Just to let you know we are starting up our coffe mornings on the 1st of july at the driving range in Orministon road it has a fab cafe there....what school does Dylan go to....good to hear from you

:):):)

Yes, we live in Addison, Dylan goes to Ardmore Primary School, the coffee mornings sound great. I would be keen, I have only met one other mother who has a child with Type 1 Diabetes, but she nows lives in the Bay of Islands.

[Ivan's Mum]

We got out of our appointment at about 9.15 - where were you in the waiting room. Ivan was out there without me because he was so bored. NowI'm trying to think which one you could be.

Was your back to the wall and your son sitting opposite you?

You wouldn't have missed Ivan he'd have tried to get anyone and everyone to play with him.

We've opted off the lantus at the mo but I think we might revisit that shortly. We're knocking back the protophane too but I suspect that it will be back up again soon.

[DylansMum]

We got out of our appointment at about 9.15 - where were you in the waiting room. Ivan was out there without me because he was so bored. NowI'm trying to think which one you could be.

Was your back to the wall and your son sitting opposite you?

You wouldn't have missed Ivan he'd have tried to get anyone and everyone to play with him.

We've opted off the lantus at the mo but I think we might revisit that shortly. We're knocking back the protophane too but I suspect that it will be back up again soon.

Yes I was in the waiting room, my son was sitting next to me, there was another lady with her daughter sitting opposite us, there was also a couple there with their two sons and they were sitting opposite a lady and her son. Was that you?
Its a small world.

[Ivan's Mum]

We got in at 8.45 and left at 9.15 so I think we beat you too it. I was racking my brain for who was left in the waiting room. We will have to meet up on the coffee morning.

[DylansMum]

Yes we will have to met up at the coffee morning. I know we waited ages to be seen, our appointment was for 8.30am ,but we didn't get seen until 9.30am, its the longest they have ever taken.

[Ivan's Mum]

sorry in delay. The reason it takes so long is I get in first.... NEVER get an appointment after me as I've got a list of questions and why nots that I bat around (I think they draw straws to see who's going to get me)

[Vicki]

Hi All I am Vicki mother of Jamie aged 6 who was diagnosed at 2 1/2. I am so glad i came across this site as I seem to of got caught up in an american site which totally confused me as i had no idea what they were talking about. My son is managing well with his finger pricks and insulin but his moods swings leave alot to be desired. Anyone else had these problems???

[kiwikid]

Hi Vicki - its nice to meet you :) Its great to hear you're doing well.
We are having a few moody times - I think its more age than Diabetes though. Rachel is just trying to stamp her authority on our family. Lifes hard when you're the youngest of 4 :rolleyes:.Our kids do have issues with feelings though, and it would be nice to have some help to deal with these things when they arise.
I have the feeling you're down south? :cwds:

[Vicki]

Hi Jane Yes I am from Timaru. Its amazing all you guys talking about pumps we down here have not even brooched the subject.. I did look into it though and the price put me off but you never know whats gonna happen in the future. Jamie seems to be managing ok as he is so why spoil a good thing, although i will look into it again. His moods are really radical so we have now got the woman from learning and behabioural who has been assessing him at school to also deal with us at home which has only happened in the last day or so, so fingers crossed.

[kiwimum]

Hi Vicki.

I'm Debs. Welcome to the site. 8 months into our new normal and this site has been a real sanity saver at times. I don't add my two pennies worth much but I do lurk alot.
Debs

[Vicki]

Hi Debs I must say it was a relief to find people who talk same language. Ive found it quite hard not knowing that many people with kids with diabetes. Jamie is the only 6 year old around here, I know acouple of younger ones whose littlies have been diagnosed and my daughter who is 15 has two friends that wer dxd 2 years ago. They are great to talk to

[Ivan's Mum]

Greetings.

Don't normally hover at this end of things but see that we have a newby.

Yes, it sucks farts to have this in your family but at least we help each other make the best of a bad situation.

Because no matter what, if someone isn't living with this on a day to day basis, they just don't get it.

Hang around the forums, you'll learn so much and finally get it.

There are a few really good books that I've got if you want any titles.

BTW - my son is 6 and JAnes daughter just turned 6

[kiwikid]

No No No Fran!! Rachel is still planning the big 06 birthday of the century:rolleyes: end of August for us!
I think you are all invited - she seems to be planning on inviting the whole of NZ!
I think I am going to sneak a cake into school on the Friday and be done with it that way :p

Which insulins and what sort of regimen is Jamie on Vicki?

[hockey7]

Hi Vicki...

Im Karen and Mattie was dxd at 1....hes now 4 and on a insulin pump and also just today got a teacher aid at kindy which Im really grateful for...you know you dont always have to pay for the pump...I here the variety club pay for pumps another mum mel who is down south applied and got one...the lions club of howick helped pay for ours....in fact the rotary wanted to pay for it as well...so there are many options...I find pumping great it helps so much with behaviour because their BSLs are kept so much more accurate and we have been pumping about 8 weeks and have noticed an incredible change in Mattie...so much more reasonable than before...mind you he was very young so his control was not great..no matter how hard we tried...Ivans mum and myself can help you if you want to put a proposal together in the future to get a pump.....we are highly experienced!!!! whatever!!!! but we will try...:) let us know if I can help in any way...up here in the big smoke we are quite friendly people...

[Vicki]

Hi all
Fransesca i would love some book titles. That would be great.
Jamie is on Penmix 30 twice a day. We were on two different mixes one for morning and 1 for night but the Penmix 10 is being deleted from September so now its abit easier with just the one pen. His readings have been alot better since this happened. Having alot of trouble with him taking food from the cupboards lately. Apart from locking them all what can I do??
I am interested in hearing alot more about the pump. Where do i get good clear info on them?

[kiwikid]

Ask your Dr about pumps - our paediatrician had got to the stage where he rolled his eyes whenever I asked to try something new, but he was more than happy to help us get started. We had to have 2 trips to Starship (5hrs drive each way) but it finally happened for us.
Ring the pump people and they should send a pump rep to your house. Pumps are expensive, but the Variety Club are fully subsidising them for some people, or you can apply to your local service clubs as Karen said. They are also very expensive to run, but some area health boards do supply supplies or financial assistance ( I wish we lived in the Waikato as they pay for both pump and all supplies :rolleyes:)

Cozmo - www.insulinpumps.co.nz 0508 4 COZMO
animas - www.nzms.co.nz (go to products - diagnostic and screening - diabetes- insulin pump therapy) I can't find an 0800 number???
MiniMed - www.medica.co.nz 0800 106 100

Theres lots of threads on here about different pumps and comparison sites.

Because we are pumping I let Rachel have whatever food she wants- within reason - its so easy to give insulin through the pump. I try to never say no to food - I only ask that she tell me whatever she going to eat, so we can tell "Dora" (her pump). It always amazes me how much Rachel can eat - I think 6 yr olds must be really hard to fill up. It must be extra hard on penmix as you can't just give an extra injection to cover the food. Would free food fill him up? veges, cold meats, bacon and eggs??

Good Luck!

[Ivan's Mum]

[QUOTE=Vicki;55099]Hi all
Fransesca i would love some book titles. That would be great.


The others can help here, but what I did was get them out the library first to see if I wanted to buy them. Manukau Libraries even ordered in several books just for me so if your library doesn't have them, ask them to get them.

The best book I read was Type 1 Diabetes a guide for Children, Adolescents, "Young Adults and their caregivers. By Ragnar Hanas. It's a bit more of a users manual and you don't need to wade thru all the T2 stuff.Had some really great tips in it.

I did read think like a pancreas - can't remember who wrote it but great book too. Probably a oncer thou (in saying that I might still get it). You can find the details on AMazon.

I've heard the Pink Panther books are good but have not needed them with the T1 Diabetes book I've already got.

Any others ladies?

Good god Jane, all this talk of birthdays and it's not even happened yet? Well I hope you got the barbie computer when it was on sale!

[Ivan's Mum]

yeah, I recond it's easy to get a pump (it's running it that's the killer) the only thing I would suggest is not to run before you can crawl. You need to know how to deal with what you've got before the pump IMHO so that if things go belly up you know how to survive until the pumps fixed.

Also, you'd need to check where you would go for a pump start. Your district health board normally pays another if they don't have anyone that knows about it.

I suggest you start talking about it now so it won't come as a shock to them when you put the wheels in motion.:D

[kiwikid]

You need to know how to deal with what you've got before the pump IMHO so that if things go belly up you know how to survive until the pumps fixed.

Rachels pump has just been sent back to the US as it developed a tiny crack around the cartridge window - we had the loan pump before we had to send the other back (prepaid courier bag supplied). Our pump rep has said he'll fast track a loan pump to us if anything ever happens in an emergency. :cwds:

[Ivan's Mum]

Indeed they all promise to get you a loan pump, but if you're out in the whaps or it's a weekend, you're on a cruise, or you can't get hold of the pump rep, prepare to be at least 24 hours without one.

ANyway, I bet the doctors won't let you pump til you're 12 months down the line. They wouldn't in AUckland but I recon about 6 months in to it you're the expert regarding your child.;)

Either way the offer is there is you need a creative eye for a letter.

[Francie]

Hi Everyone I'm Francie Mum To Fabian now aged 19yrs he has been a type 1 diabetic now for 4 years I know Jane very well and her wonderful Family as well as her parents. We were involved in Diabetes for youth together when Fabian was first diagnosed she is just great. Good luck with the trip Jane you will be great.I have chatted to Mel before Hope all is well down South Mel. Fabian has had his first visit back to hospital after 4 years with dehydration due to having the flu and is back on track with his Numbers. He has been running high for some time but hard to tell teens what to do. He is back to single figures and is doing great.:D

[kiwikid]

Hi Francie **waves** :D Its nice to seee you here.

[Alpha]

Hi everybody :)
just new here, my wee boy was diagnosed with type one on saturday night, he's 19 months old.

Still in the learning stages, but found this site and thought would be good to sign up for support and the likes :)

Look forward to getting to know you all...

[kiwikid]

Hi Alpha :cwds:
Its nice to meet you, but we wish you hadn't had to join us here:(
How are you and your son doing? Don't they just seem too little to have to cope with this? Have you got lots of support? How are YOU doing?

Let us all know if you need anything - we'll do what we can to help. Things do get easier as you settle into a routine.

Its 5 yrs since diagnosis for my girl, and the poor kid is still only 5. Shes busy planning the 6th Birthday of the Century though, 9 days and counting.

Take Care for now - catch you soon :cwds:

[Alpha]

Thanks Kiwikid.
I think I'm doing well, as anyone can in week one, I dont think the shock was as bad as it could have been due to suspecting for about 3-4 weeks, due to things like him drinking about 3L a day, I dont know any adult who drinks that let alone an 18 month old.

Most of the learning as been easy in terms of the theory as I had gestational diabetes and he's on the same insulin i was on which has helped.

We're trying to settle back into our own routine, hopefully that wont take too long :)
but who knows.

[hockey7]

HI Alpha

My litle boy Mattie was dxd just before his 2nd birthday...that was 2 years ago...we have just started pumping and that makes a difference....I wish you didnt have to be here either its not a easy thing having a toddler with diabetes ...Its damn hard work...but at least you have us we can offer any advice and hopefully help out a little..I know I use this list an awful lot to read and just learn more about Mattie....

Its a pity we dont live in the same city....coffee always helps!!!

my email address id kbass@xtra.co.nz if you need any help at all.....

Looking forward to getting to know you...:):):)

[Ivan's Mum]

Hi ALpha,

WELCOME..... sad that you're here but we're here for you. My son is 6 and a ball of energy. We're working on a combo of lantus and pumping (starting the pump again september girls). We're all a good bunch of chatters so check in if you want to know something and remember there's no such thing as a silly question. You should see all the dumb stuff I've asked!

Hope to see you around anyhow.

Jane, posted the pump pouch today. Hope she likes it. The pink lining is not my best work. It's all been pre-shrunk so should be good to go in the machine when the cows get at it. It might not be my best work but comes with all my love and wishes for a great b.day.

[Alpha]

Thanks Ivans Mum.

We'll we've been through our first couple of hypos which wasnt too bad.
and come out the other side obviously.
Might be the start of him hitting honeymoon period me thinks, but who really knows.

Had his b/s high the last few days due to some pregnazone he had at the Dr's for his cough which was cool, well at least understandable.

Just wish he'd pick up his day nap again so I could get some down time :)

[kiwikid]

Ah - the daytime nap. Now that my kiddies are all at school, I get one nearly every day :p

Seriously though - I can't remember the first few weeks, months or years since diagnosis because they have all passed in a blur. We had a few scary hypos and some whacky high numbers (and we still get them) and we didn't get a honeymoon period at all (I haven't ever had any type of honeymoon :( ) We seem to have got through pretty well unscathed though, as Rachel is a happy, energetic, bouncy, naughty, and normal little girl.

I do hope you manage to get a break soon Alpha. Do you have anyone who is helping you out? I'm happy to mind your little fella if you're ever passing through this way.
Which insulins are you using? I think we've been through most that are available and now we're pumping. Its the best thing we've tried so far.

Rachel is wearing a cool new spotty pumppack that arrived in the mail today :D Thanks Fran - she thinks its so cool.

Take Care

[Alpha]

Yip i have hubby (well will be when he get's round to blardy asking :rolleyes:) helping out and he's great letting me get some time to myself etc in the weekend and evening's.

Although it's just me during the day.
Might have to look at picking up some more play groups etc to help get us out of the house.

We're using novorapid and protophane (sp) which is what i was on while i was preggers. (gestational diabetes)

Im actually starting to wonder if we wont get a honey moon period, as Gabriel had the same symptoms he had when diagnosed about 9-12 months ago and nothing was done of it, they said he just had a tummy bug and sent us home, and Im starting to think that that might have been the onset of things, but who really knows.

yeah Gabriels come out high just now for dinner so wont eat anything.
Didnt think he'd go form 3.5 hypo to 29.9 in 3 hours though :confused:

Right time to poddle off and start the bedtime routine.

[kiwimum]

Hi Alpha

Debs here aka kiwimum.
Diabetes sucks!! We are 8 months into it and still find it bloody tiring, stressful etc etc.

Hubby Carl is awesome but he goes away alot so as usual it is me that keeps the home fires burning!

What's the support like in Wellington? Chance we may get moved there with the airforce but then again may not!

kiwikid, know what ya mean about the nana naps. Sometimes Dr Phil and Oprah just aren't interesting enough to keep my attention either. Hope you have a good day to yourself at the library etc (saw it in another post). I turned 40 a couple of weeks ago (look 60, diabetes, kids and a husband will do that to you) and my mate took me out to get my nails done. 1st time I've ever been a lady!

Francesca, haven't forgotten ya! Going to ring you sometime next week if you're around. Hubby is home on leave this week and really cramping my style! He wants to go to the erotica expo this weekend, thinks he might get asked to do a movie!!! Yeah right!

Better go and organise my little cherubs. Anyone want a 13 year old hormonal boy? Going cheap!
Catch up later
debs

[Alpha]

The medical support is great. the peads guys are fantastic.
there is also apparently Diabetes youth which is supposed to be quite good, I havent had a chance to check them out yet.
Although we we're put in touch with a family who's son was dx at 4 and is now 8 and we are meeting them this weekend for afternoon tea.

And if you move to wellington there will also be me :)
tehe.

I dont need a hormonal boy thanks I have a strong willed 19 month old and that's enough.

[kiwimum]

Glad to hear that the support is great. Given the choice of moving to Wellington or Ohakea, there really is no contest! I've had dealings with palmerston north hospital before and wouldn't trust them as far as I could throw them to be honest! The support here in Auckland is good too. We have had awesome help from the diabetic specialist team at Starship.
Tyler has been on Camp with Diabetes Youth and had a whale of a time. It was about 6 weeks after his diagnosis and it was really great for him to see that there were other children like him. He also learnt to do his own injections which has been a god send.
At 11 he has grown up a bit faster than other kids but he has taken it all in his stride. His dad and I do really well physically but have the occasional pity party for two! As a family we are real whizzes at label reading and carb counting as I suspect all parents with this 'boarder' are.
We have our next 3 month appt at Greenlane in a couple of weeks so we'll see if we are doing as great as we like to think we are!
Debs

[ruralmum]

Hi, I've just joined so thought I'd better introduce myself and my daughter.
My daughter Sinead will be 16 in Dec. She was diagnosed 3 years ago. We started pumping in May this year (Animas). We live in Whitford, Auckland.
We have another daughter, Nicola who is 13 and is very close to Sinead, oh and lots of pets :) Heather.

[kiwimum]

Hey Heather

Welcome aboard!
Now I'm going to show my ignorance and ask....Where is Whitford? North or South Auckland?!! Sorry for being a bit dumb but my blonde genes are slowing down for the night!

Hope to hear heaps from you

[Scotty]

Hi Heather, welcome. We are pretty new here also, but you'll find it a great place. My son is 14 and he was diagnosed at 3, but like you he has only been pumping since June. I'm with Debs - where is Whitford?

[ruralmum]

Thank you for the welcomes. Whitford is between Howick and Clevedon so kinda South East Ak. We're on a small lifestyle block and both daughters go to Howick schools. Heather.

[kiwikid]

Hi Heather - Its nice to meet you :cwds:
This is a great place for advice and support and making new friends- I just can't stay away :p
My eldest daughter is 16 - not an easy age :rolleyes: How is Sinead coping?
We're hoping to come up over the Summer school holidays and meet up with some of the people we've met both from here and the CWD NZAUS email list.
Its a beautiful sunny Monday afternoon here, nice after all the rain of the past few weeks. Have a great week :cwds:

[ruralmum]

Hi Jane, she's not doing too bad thanks. She's a bubbly sort but I'm sure she gets fed up with everything, especially if she's tired. She's really enjoying the pump so that has been a boost. She was injecting about 7 times a day previously and not winning, she was usually high, or bad lows regardless of what we did. Lantus didn't help. She changed Colleges half way through last year and where she is now there is a handful of Type 1's and a neat nurse so this year has been a lot better than last. Heather.

[Ivan's Mum]

hi Rural, I'm Cockle Bay way as is Karen (hockey something or other) she's out dannemora way. Karen sorts out the coffee morning thing 4 times a year and the zoo trip is coming up with D youth (thou with the teens I'm never too sure if they are in to that kinda thing).
We do a mixture of pumping and lantus and are enjoying the freedom from the injections.
I'm always around this site but forget to come to the NZ bit.
WELCOME!!!

[kiwimum]

Francesca

WELCOME BACK!! Sooooooo, tell us all about your trip. Did ya have a good time? Did ya spend heaps? Tell us, tell us!

[Ivan's Mum]

spent heaps, so it's going to be a tight christmas this year. I liked LA and the cheapness of it all (cosmetics, clothes, food variety) but wouldn't want to live there. Good holiday place debs and I didn't do one tourist thing!

Will bore you with all at the Zoo in a few weeks, we'll have to figure out where to meet up.

[kiwimum]

Re Zoo meet up - sounds like a plan to me! I'll be the reeeaaaal hot chic with the studly husband!

[Ivan's Mum]

I'll be the one husband-less and exhausted. We have a birthday party that morning and the school gala the next day. Crikey I'm going to be knackered.

Not long now, I better bring the camera.

[ruralmum]

Hi Francesca, thanks for the welcome. We've been to the Zoo Do's the last 3 years but Sinead doesn't want to go this year. :( It's in the middle of exams. I must look out for the coffee morning dates and put them in my diary. I went to one in Howick about 3 years ago. Are they in one of the newsletters? I keep forgetting to check in on this group. I'm so used to the Yahoo groups where you receive individual e mails. :) Cheers, Heather.

[DylansMum]

We are going to the Zoo this year too, missed it last year, I was overseas with work , hubby was going to take the kids, but it was pouring with rain, and he thought it would be cancelled so didn't go, but in the end I think it stopped raining and cleared up just before it started, but by then hubby had already told Dylan they weren't going. He said it wasn't a very nice day at all.

Kim

[Ivan's Mum]

Hi Guys, sorry have not been to the NZ bit in a while.

My cell for all you zoo bunnies is 0210 446 242, I'm wondering if we should make a sign (kidding) or arrange a designated meeting place.

We've now got 2 b/day parties (including chipmonks) to go to first so I imagine Ivan will be an old grump. Looking for a dad to walk the kids around so we women can talk! Debs thought I'd fob him off on your man!

Coffee mornings are organized by KAren Bass the note comes in the pancreas press and I think there might be one before Xmas but maybe not with the zoo thing.

SO can we just have a quick 'I' on whose coming,

Me & Van
Karen , Matty and Joe (Possibly hubby too)
Debs and Family
Dylans Mum (sorry, shocker with names)

Anyone else?

[kiwimum]

I was just going to make a banner with my CWD user name on it!

As for Ivan, my boys are pretty good at going off with other kids and looking out for them, so I don't see a problem with our wanting to chat.

Don't know what state Carl is going to be in. Him and Tyler get back from Rotorua on Friday night. Sounds like they have been extremely busy so I am imagining they are both going to be knackered!

Here's a hint to tell it's me - I'll be wearing a blue wristband!

[DylansMum]

I am Kim, I will be with hubby Sean, Dylan and daughter Lauren (13yr old, blonde and very tall!!). If you guys have facebook look me up, under Kim Whittaker.

See you on Saturday.

Kim

[Ivan's Mum]

hi Kim, don't have face book, but might try on my ancient computer to look you up. Can you PM me your cell # so I can call or text on the day to say high.

I might try to find my CWD back pack so you might find me by looking for my back.

Righto, anyone else wanting to meet up should PM me #'s too.

[amber3cs]

Hi everyone,
my name's anne we live just north of wellington. my son was diagnosed 5 weeks ago and we think he is just starting the "honeymoon period". he is 4 and it breaks my heart to see him go through all of this.
we are all still a bit stunned at the moment, one day we can't seem to give him enough insulin and the next we are back-pedalling. tonight is the first night in 5 weeks we haven't had to give him any insulin as he has been sooo low in the mornings.
we have 2 other children, 1 older and 1 younger.
we have had great support from the hospital in lower hutt and can't say enough good things about the diabetic nurses, but we don't know anyone else with children who are type 1 but we are meeting up with some families this week so we are all very excited!:D
hope you have all had a peaceful and "uneventful" new year.

amber3cs

[kiwikid]

Hi Anne - its nice to meet you :cwds: You've found a great place here for support and information. Great that you feel you have a good team of medical support too. On the main page of CWD under "mailing lists" you can join the NZ/Aus email list for info as well :cwds:

It doesn't sound as though your New Year has been "peaceful and uneventful", but diabetes does get easier - though probably NOT less frustrating :rolleyes: Those low mornings can be very scary!

Hopefully we'll hear more from you.
Take Care :cwds:

[amber3cs]

Thanks Jane- I have been on the mailing list for a couple of weeks but am still learning my way around this site so hadn't been onto the forums till last night. It has definitely been a scary time for all of us.
My eldest(6yr old) thought he could catch diabetes by drinking out of a glass that his brother had drunk out of( we don't encourage them to share drinks:) )- here we were thinking we'd done a great job of explaining things to him. Oh well I guess a lot of it comes with time.
take care:cwds:

[Alpha]

Hi Anne,

just stopping in, it's the same Alpha from EBB :) *waves* must catch up soon :)

ILl e-mail / call soon :)

[Scotty]

Hi Anne. Welcome to the forums. You've found a great place here for information and support. These early days can be difficult, but just take each day as it comes, it does get easier.

[DylansMum]

Hi Anne,
Welcome to the forum. Hubby and I were stunned when Dylan was first dx'd, it hit me the hardest, but it does get easier, although I wouldn't have thought that the first few days, it does.

Take care, and any questions feel free.

Kim

[Ivan's Mum]

Hi ya, Ivan was DX 5 days before his 5th birthday. He's 6.5 now and it's amazing how well he deals with it all.

Don't forget that your local library will have a wealth of information for you, and will often order in books for you if you want to read them. Mine purchased 'think like a pancreas, sweet kids and T1 Diabetes for me.

It will be a rollercoaster for a while so hold on tight and share the load.

[amber3cs]

Hi everyone, thanks for all your support. It's nice to know there are others out there who are going through similar stuff.
Quick question- we have had a lot more highs and lows since honeymoon started but have noticed cam's behaviour has been A LOT worse when he is hi. wasn't sure if this was typical as he has always been a bit volatile in the tantrum department!:D
Any advice glady accepted.
Thanks

[kiwimum]

Hi Anne
Welcome to the club we wished we didn't belong to!
Our son Tyler is 12 and was diagnosed a month after his 11th birthday, so just over a year ago. Totally out of the blue, with no family history of type 1 but lots of type 2 and several autoimmune diseases.
Tyler gets very aggressive when he is high. Not physically but verbally. (Always been a bit volatile!)
Life with Diabetes is like one big roller coaster ride! Lots of twists and turns, ups and downs. Sometimes you just have to sit back and go for a ride!
Look forward to 'seeing' you around.

[sugarmonkey]

Hi
My names Stacie, and I'm in Palmerston North. I've been on the email list for a while but I just found this part of the forum on the weekend. Great to hear from people in our area of the world.
Phillip is 11 and was dxd in Jan 2005, 4 weeks before he turned 8. He's always been really good at handling the d stuff.
I'm a solo mum so do all his care myself, as well as dealing with his younger sister, Shanaiah, 9, who has some health issues herself.

[kiwimum]

Hey Stacie

Welcome to our 'club'.

We lived in the huge metropolis of Bulls for 6 years but moved up here to Auckland nearly 4 years ago. Only here because of Carl's career! Chances are we will be moved back to Bulls when Whenuapai airbase closes some time this century!

Look forward to hearing from you.

[VickyA]

I'm Vicky, just joined the forum. I live in Christchurch with Alan and my three boys :)

My son, Finlay was born this April without a pancreas and so has been diagnosed with permanent neonatal diabetes. Not strictly speaking Type 1 but has the same symptons. He started pumping at just two weeks. It certainly has been a huge learning curve for us (and still is!) and he certainly keeps us on our toes!!

[kiwimum]

Hey Vicky

Nice to 'meet' you! Sorry you had to join.
I am not even going to pretend to know the ins and outs of your position, but it sounds like Finlay is as close to Type 1 as anyone can get!
I read in the other introductions about his other problems and his surgery. Hope he is doing ok.

Hope to see you round often.
Debs

[kiwiliz]

Great to "meet" you all - didn't realise there were so many kiwis on here. New to forum - old to diabetes - well it seems it anyway (3+ years). I am in Christchurch. Already "spoken" with Vicky - look forward to meeting the rest of you in due course.

[kiwimum]

Hi Kiwiliz

Nice to 'meet' you too! It would be great if we could have a big get together one day and at least get to know each other properly.

[kiwikid]

Hi Vicki, Hi Liz - its nice to meet you both :cwds:

[Scotty's Mum]

Hi Vicky and Liz, nice to "meet" you both. There are a few of us kiwi's here, but its always good to have some more.

[Ivan's Mum]

Hi ya, good to read about you. I had heard from someone is CHC that there was a child born without a pancreas if you need any help or advice you will find a great bunch of people around who can share a wealth of information.

See you around.