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DD is new onset Type I

Discussion in 'Parents of Children with Type 1' started by Southpaw, Mar 21, 2010.

  1. Southpaw

    Southpaw Approved members

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    cross post from Pump Forum:

    HI there! I am new here. My daughter is 25 months old and was diagnosed at the end of Feb 2010 with Type I.

    She is "honeymooning" so her lantus dose is slight, but she's still hypo often.

    So, our ped endo group has already been talking to us about the pump. With their advice and after consulting with some Type I peeps that I know, we are going with the Medtronic Minimed.

    Apparently, we are getting this new Revel one.

    I just spoke with the medtronic rep Friday and DD's pump is being sent next Friday. We are almost done with education classes at the endo office and start pump classes at the hospital in 2 weeks.

    Ideas? Thoughts?

    We of course are totally frazzled and living day to day right now. We could use any help you
     
  2. emm142

    emm142 Approved members

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    Hello, and welcome to CWD. I am sorry to hear of your daughter's dx, but I'm glad you found us here so quickly. CWD really is an invaluable resource for any person or parent dealing with type 1, and you will be able to find information about absolutely everything here by asking or using the search function, and people are always happy to answer any questions you might have.

    I am on the minimed 522, and for me it works so much better than lantus. Minimed also have an integrated continuous glucose monitor with their pumps, which might be something you look into later. The pump is a big learning curve at first; some people have beautiful pump starts, but don't be too upset if it doesn't go as well as you would have liked. My first few weeks of pumping were a nightmare, but once you have the initial dosages sorted out it gets a lot easier.. I guess what I'm saying is don't give up too quickly! I was ready to throw the thing at a wall after the first few weeks, but soon learned to love it. ;)

    My other tip for you would be to make sure you have the right infusion set for you. My main problems with pumping came from using an infusion set which didn't work for me (apparently I had too little body fat, so it was hitting muscle and kinking, which interrupted insulin delivery), and pumping works much better since I started on the sure-T infusion set which doesn't have those problems.

    Sorry if that was an information overload, but feel free to ask if you have any more questions about minimed pumps.
     
  3. 2type1s

    2type1s Approved members

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    So sorry to hear about your little one's dx! We love pumping! I find it so much easier to deal with lows (I can just decrease basal instead of feeding the insulin constantly!) We have the animas for our girls, but minimed is awesome as well!
     
  4. Ellen

    Ellen Senior Member

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    It sounds like you have a wonderfully proactive pediatric endocrine team that understands the need to personalize medicine and provide you with choices. The pump can be a wonderful tool for dosing insulin in the very tiny increments your child needs. Get all the hints and help you can from fellow parents of little ones on pumps to make sure the lock out feature is used and you can safely keep the pump out of her little hands.
     
    Last edited: Mar 21, 2010
  5. Jacob'sDad

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    Hi! Welcome to CWD! Sorry you have to be here though.:( 25 months is so young. Those little ones can be quite tough to manage because carbs and insulin can have such a drastic effect on their blood sugar.

    I can't say that I know much about the new Revel pump, but I think it is quite exciting that you are getting one. It will be a great advantage to be able to program multiple, and very small basal rates throughout the day. This will replace the Lantus, which you can only give once or twice a day.

    Oh, I just did a quick search and it appears that the Revel allows for very small basal rates. That will be SO useful for a 25 month old who is honeymooning!

    I don't know how much insulin you are giving for food or what her carb ratios are, but with the pump you can set them as high as you need to and I would imagine that will be VERY high at first, meaning very little insulin for food. When I say "high" I mean that 1:50 is a higher number than 1:25, but 1:50 is LESS insulin.

    Another thing to really watch is the ISF. That's the insulin sensitivity factor and it is programmed in the pump so the pump knows how much 1u of insulin will drop BG if given without food. It comes into play when correcting high BGs. If your child is honeymooning, it may not come into play much at all, because, for the most part, your endo may not want those high BGs corrected. The reason is because, if your daughter is still producing some of her own insulin, those highs may tend to come down on their own. Of course, that is between you and your endo, as to how to deal with highs. Every child is different.
    If you do correct highs and therefore use the ISF, it is important that it is set high enough. It may seem like 400 is too high, but for a tiny one it could be right. It could need to be higher or lower but I would hope it is set quite high at first to be on the safe side. If you correct a high BG and it doesn't come down enough, you can always correct again ( if that's what the endo says to do), but if you over correct because the ISF is set too low, you're going to be fighting to raise a low BG.

    Anyway, there's other stuff, but I'll let others jump in. I tend to get a bit long winded.:rolleyes:

    Once again, welcome! We're glad to have you here!:):cwds:
     
  6. Becky Stevens mom

    Becky Stevens mom Approved members

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    Hello and welcome:) Im sorry about your daughters diagnosis. There are many members here with very young children like you daughter that would be happy to give you support and advice. Many of these children are on pumps as their endos and parents felt that it was the best way to use minute amounts of insulin to treat the childs diabetes. I hope that knowing you are not alone brings you solace and a little happiness as you travel with all of us on our journey with diabetes
     
  7. GaPeach

    GaPeach Approved members

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    So sorry that you are facing this with such a young child. My DD was 8 when dx, so I cannot imagine. She was very sensitive to insulin and the LOWS were terrible. We had to fight (insurance) for a pump. She got it 1 1/2 years after dx.

    I echo Ellen - it seems you are in a wonderful endo practice. Be thankful.

    May your pump transition go smoothly.
     
  8. Flutterby

    Flutterby Approved members

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    Hello and Welcome.. my daughter was young at diagnosed (although not as young as yours, she was 2, almost 3).. we had a horrible time with wild swings going from hypo to hyper and all around.. it sure was a rollercoaster ride! We went to the pump shortly after diagnosis as well.. she's been pumping with MM for almost 4 years.. her warrenty is up in 2 months, so she'll be getting the revel then.. I can't wait to get my hands on it.. you'll be one of the first so you'll have to let us know how its going for you.
     
  9. Sarah Maddie's Mom

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    My daughter was older, both at dx and at pump start, but I can't say enough about the positive impact pumping has had on our quality of life. :cwds:

    Once we got over the initial, " OMG, my child is attached to that machine!":( which maybe took a day;) it has just been all out good!

    Wishing you a smooth transition and a great pump start!
     
  10. BrendaK

    BrendaK Neonatal Diabetes Registry

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    Welcome! My son was dx'd at 9 months old and went on the pump at age 4 1/2. The one thing I wished is that I would have put him on the pump sooner -- so kudos to you and your endo team for being proactive!

    I was scared to death, but he was totally fine. The issue of him being attached to a machine was far more MY issue than it was his.

    If you don't mind sharing, what part of IL are you from? There are lots of us on the boards! Good luck!
     
  11. Colleen

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    Hi, sorry about the dx, but you have come to the right place for help. I would have her wear a practice pouch to accustom her to having the pump on.
    We had to put Erik into a onesie at night or he would accidentally pull out the site. It is great you are able to start pumping so quickly. We too started pumping 8 weeks after dx and it was the best decision for us.
    Good luck.
     
  12. SarahsMum

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    Hi

    Welcome to CWD

    I am mum to Sarah who is a young one with Diabetes. She is now 16 months old and was diagnosed with Diabetes when she was 2 days old.

    We had a rather stressful start as she was prem (born weighing 1 pound 6oz). We finally got her big enough for a pump when she reached 4 pounds.

    We use the Animas 2020 and its given us some great control.

    Pumping with young children is definetly a challange and Sarah is super sensitive to insulin, so we do still get frequent hypo's but as she is getting older and bigger its becoming alittle easier to control, but our control is far better than it was on injections, we trialled her on Lantus but it was a bit of a nightmare.

    One of our biggest issues is she does pull the cannula out quite a bit, we just try and keep her in shorts/pants rather than dresses so that she cant tug at the line.

    If I can help at all, please let me know
     
  13. Seans Mom

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    Wanted to welcome you to the board. Sorry that you have a reason to join us.
    :(
    Also wanted to mention that there are shirts made for little ones with a pocket in back to keep the pump away from reach, if needed.
     
  14. Skyefire

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    My son was dx'd at 21 months old, and was pumping 4 months later, he is very insulin sensitive, so needs very small amounts of insulin, I can not imagine dealing with his Diabetes with out his pump. It is a learning curve but the control you have with it, out weighs that! Good luck with your pump start :)
     
  15. Toni

    Toni Banned

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    Welcome. Very sorry to hear of your baby's dx. Such a young age but, unfortunately, you have a lot of company on this board. Don't have the Revel yet; it came out just in time for your baby (lower basals). I love the Minimed brand of pump; has been very reliable for us. There is an old thread on here where a Mom makes her own undershirts to hold the pump. Pocket is on back of undershirt. Might be worth investigating; buying them is expensive. There is a lot of good advice for parents of young toddlers here. Sounds like you have a good endo team; that is invaluable.
     
  16. Mom2Boys

    Mom2Boys Approved members

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    I'm so sorry your little one was diagnosed, but glad you found this site. You will learn so much from the people here.

    My son was diagnosed at 27 months and is now 4 years old and doing great. We are approaching our 2nd year living with diabetes and it's amazing how you learn to adapt and eventually get used to the new "normal." It is tough with very little kids because they are so insulin sensitive, but the pump will make it so much easier to manage. We got Luke on the Minimed 522 three months after he was diagnosed and it made a world of difference for us. I hope it does the same for you and daughter.
     
  17. Southpaw

    Southpaw Approved members

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    wow!!! Thanks for all the support and your stories!! This is really amazing to me!

    I'm happy that you think going on the pump means that our endo office is proactive. I am so new to this that obviously, I don't know what is a good thing and what is just plain nuts! LOL!

    They did tell me about shirts with pockets on the back. I have no idea where to get those. I suppose I can google it!

    Again, your info was awesome...I spent forever just reading thru and trying to soak everything up. I'm sure I'll be asking for q's and needing more help down the road.

    Thanks again for the warm welcome!:)
     
  18. LJS118

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    Welcome :) Sorry to hear your child was dx'd, my son was actually dx'd at 24 months so I understand how you are feeling. He is 13 now...it does get easier as they get older. So happy to hear the pump is on its way:D
     

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