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New member...my two year old daughter has T1D.

Discussion in 'Introductions' started by belconning, Jun 13, 2011.

  1. belconning

    belconning Approved members

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    Hi there,

    I have just come across this site while looking for information about the smart insulin...sounds exciting, hope it will hit the shelves soon!

    My two year old daughter was diagnosed with type 1 almost a year ago now. She is amazing, so brave and doesnt let anything stop her from enjoying life everyday!!

    I am finding her levels way easier to manage now that she is on a pump. She has had the pump for about 3 months now and we are still "tweaking" the basal rates etc as we are running into a few probs (mostly with highs and lows overnight!) but I am hopeful that it will stabilise soon. Alot of hard work and sleepless nights for me but I do enjoy our midnight cuddles!!

    I wish for a cure everyday for my little princess and everyone living with diabetes. Thank god there are lots of smart people out there working on it and lots of money going into research.
     
  2. mommabear

    mommabear Approved members

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    hello and welcome to the forum:cwds:you will find lots of fantastic info on here:)
     
  3. MamaC

    MamaC Approved members

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    Welcome to CWD.
     
  4. JeremysDad

    JeremysDad Approved members

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    Hi and welcome to the forums. Sorry you are here but at least you have found a great resource. Please come back often and ask questions.

    And regarding wishing for a cure. Yes, we are all hoping. I think we are realistic that it will happen but not for a long time though. Until a cure is found, we all need to do the best we can to manage diabetes so that it doesn't manage us!!
     
  5. belconning

    belconning Approved members

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    My 2yo daughter is ALWAYS hungry.

    Thanks for the welcome I will no doubt have questions from time to time that im sure you could all help answer!

    One thing I do find with Kaliah is that she is ALWAYS hungry!!! She eats more than her 4 year old brother...she would probably eat more than me!

    Even if she wakes up during the night when I check her at midnight or 3am she will cry for food. Her levels are usually fine so I dont understand why she is always so hungry. I dont remember my little boy eating this much at her age but then again I am probably more aware of exactly how much she is eating because I am entering the carbs into her pump every time!

    I am also interested in hearing from anyone who has used the sensor for CGM with their kids. Kaliah uses the minimed paradigm pump. Her endo would like her to try it so we can get a better understanding of her night time levels. Should I give it a go?

    :) Bel
     
  6. selketine

    selketine Approved members

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    Welcome! My son was dx'd at 26 months and was pumping 6 months later when he was still 2 yrs old. It was much easier with the pump. He is 9 now - they grow up too fast.:)
     
  7. smcnair

    smcnair Approved members

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    CGM sensor

    Hi Bel,

    My son was diagnosed before he was 5 months old last August. He is also on the MM Paradigm Veo but his endo has never indicated anything about using the CGM sensor although we havn't had any big issues with his sugars and his A1C's are also good. My endo has indicated he would like for me to try it, which I would be quite interested in doing but we can't really afford it. Do you know of any insurance plans here in Australia that cover it? We have top cover with NIB.
     
  8. belconning

    belconning Approved members

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    Hi Stephanie,

    I dont know of any programs that cover it! I only have hospital cover so the pump alone is subsidised but the sensor and the tabs required for the sensor are not.
    If you have top cover though you may get some money back for this? I'd look into it because it is my understanding that the sensor is about $1300-$1500 and the tabs are $75 for 5 days!!

    Our hospital (through the diabetes clinic) is loaning us the sensor and tabs. Kaliah's levels are all over the place so the sensor might give us a better understanding of what is really going on when she eats and how long it is taking for the insulin to work.

    Unfortunantely it is not something we could afford either so I will be borrowing it for now with the intention of perhaps buying one later down the track to use for times when Kaliah is sick or staying with the grandparents over a weekend when we feel comfortable doing this!

    She eats all day ( a grazing toddler!!) so I find it hard to get a "real" BGL as she never leaves it an hour between eating from the time she gets up!
    Im glad your little one is doing well, do you think you will go onto a pump aswell? What state are you guys in?

    Take care :) Bel
     
  9. smcnair

    smcnair Approved members

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    Hi Bel,

    I am starting on the pump next week - took a while to get it - my endo was supposed to sign a letter and send back to nurse but didn't happen until last week - I was told it would take about 3 weeks and that was 10 weeks ago!

    Our son is 15 months old now and we're having feeding issues - have been since he started eating solids. He's still mostly eating pureed food but starting to eat more lumpier foods. Some of his BGL's are up but usually because it's so close to his last feeding time so the pump doesn't do a correction because he still has active insulin. His last A1C was 6.1 but the previous ones were 5.7 or lower.

    We're in Sydney - where are you?
     
  10. belconning

    belconning Approved members

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    Hi Stephanie,

    Im on the central coast, not too far away! I work in Sydney on a tuesday and some wednesdays.

    Glad to hear you have your pump sorted out, we had to push to get Kaliah hers too! Is your endo at RNSH or westmead? We go through gosford hospital but our endo is from RNSH. He comes up to gosford to do clinics each tuesday wich is handy for us!

    Kaliah's last A1c was 7, her levels are still a bit high but I just had a look at her 7 day average and for the 1st time it is around 9! Im thrilled with that because it is usually around 12, always in the double digits! I just cant stop her eating so everytime I check her, she is still high from the last thing she ate, if we increase the basal rates even just a tad more though she has hypos usually just before each meal time...such a hard balance isnt it!!

    I think im finally onto the winning combination of rates at night now though...will know in a few more days! Would love to get to checking just once through the night again and have a bit of sleep back!!

    Kaliah is getting the sensor on thursday, Im hoping that will give us a good insight to the amount of insulin she needs at different times of the day so we can adjust the basal rates where we need to. I'll let you know how we go.

    Goodluck with your pump start!
     
  11. redcurls3

    redcurls3 Approved members

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    Hi Bel,

    Just wanted to say welcome to CWD. You will find a lot of support here. I also know of two other moms in Australia (Brisbane I think?) who have Diabetes Blogs. One is a mom who has a little girl with Monogenic Neonatal Diabetes (the kind that are able to go off insulin) and the other has a little boy with the typical autoimmune Type 1 Diabetes. Both were diagnosed around 8 months of age. Just curious, when was yours diagnosed? Here are the blogs:

    Melissa @ My Corner
    Jules @ Bittersweet
     
  12. smcnair

    smcnair Approved members

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    Hi Bel,

    I had a look at your webpage the other night - whereabouts do you work to in Sydney?

    My endo is in Penrith although he works at Westmead. I will be getting my pump through the diabetic clinic at Westmead. My son's endo is at Westmead Children's Hospital. I don't normally get up at night unless he's sick (which he is right now). I did in the beginning. . .I'm sure I will again when he gets a little older.
     

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