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Kiwi Introductions

Discussion in 'New Zealand' started by kiwikid, Apr 12, 2007.

  1. kiwikid

    kiwikid Approved members

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    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
     
    Last edited: Apr 13, 2007
  2. hockey7

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    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
     
    Last edited: Apr 13, 2007
  3. kiwikid

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    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!
     
  4. Ivan's Mum

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    greetings

    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.
     
  5. kiwimum

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    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
     
  6. hockey7

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    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
     
  7. kiwimum

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    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
     
  8. MelStan

    MelStan Member

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    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
     
  9. hockey7

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    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:)
     
  10. MelStan

    MelStan Member

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    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
     
  11. hockey7

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    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!!!:eek:
     
  12. Ivan's Mum

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    Hi All...

    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.
     
  13. kiwikid

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

    MelStan Member

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    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)
     
  15. kiwikid

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    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:
     
  16. Ivan's Mum

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    Pumping

    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.
     
  17. kiwikid

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    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:
     
  18. Ivan's Mum

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    carer support

    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.
     
  19. hockey7

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    Ivans Mum..

    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...
     
    Last edited: Apr 27, 2007
  20. MelStan

    MelStan Member

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    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:(
     

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