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Newly diagnosed---worried

Discussion in 'Parents of Children with Type 1' started by KHM, Mar 24, 2010.

  1. andrew's-dad

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    some advice for you. we too are fairly new to diabetes. andrew was dx in november. it has been a total shock and life changing experience. however, what i have learned. you have to find an endo you are comfortable with. if they make you feel ignorant or like a bad parent, you may need a new one. if you are like us, you're options are limited but we gladly make a 1 hr drive to ours because she is awesome and devoted to our kid. i send weekly updates by email and she makes her adjustments accordingly. don't be pushed around, make the endo know that its your child and noone else cares more or has your childs best interest in mind. have a heart to heart with the endo and tell them your concerns and hopefully they will ease them.

    with the highs, yes high sugars over a long period of time will cause damage to the blood vessels and nerves but its not as dramatic in the short term as lows. lows are scary. andrew had 2 "tonic clonic" seizure from lows. i put in quotes because hypo seizures are different from you ordinary seizure activity in that they can't be prevent with medication only prevention is to prevent the sugar from dropping too low.

    what i am trying to say is that with the highs. it does take time to adjust the insulin regimen and many times with the endos they make incremental adjustments to prevent the lows. what many people don't understand is that the brain has to have a continuous supply of glucose for all its functions from involuntary things like breathing, cardiovascular control, and temperature control to the voluntary things like thinking, movement, etc. also, while this is going on in the child the brain is growing and getting larger and the brain needs glucose to grow to prevent stunting the growth. the endos many times don't won't to drop a childs glucose levels too fast because of this because in the short term preventing lows in a child is more important than the highs.

    what i am saying. highs are scary and we all want our kids sugar in the normal range. when she is high make sure she is hydrated because the sugar will dump in her urine and take the water with it. encourage water, even if you have to flavor it. kool-aid make some carb free packs you can dump in bottle water and off you go. discourage soft drinks, most important anything with caffiene, it dehydrates them more. play with her when she is really high. activity will bring down the glucose levels pretty quick. however, keep a watch on it to prevent it from going to low.

    also, with andrew, we invested in a CGM. they are expensive and most insurance companies won't cover them. we were out of pocket $1600 for the guardian CGM (continuous glucose monitor) and 3 months of sensors. we really could not afford it because i am in master's school and my wife is mainly supporting the house. however, we just had receive some student loans and income taxes so we went for it. it allows you to watch the trends of their sugars and your updates to the endo can be sent in acrobate format with fancy graphs and everything. the endos use words like post prandial which means after eating. our endo uses these numbers to change our insulin regimen.

    most important, if you aren't happy with the care your child is recieving and you have options change endos. its your child and noone loves them more than you. you have to find one that you feel cares about your child almost as much as you do. also, continue to educate yourself, with diabetes education is power. finally, watch her trends, like do certain food items cause her sugar to spike more than other. also, with any insulin regimen i encourage you to do a 2 am blood sugar to watch for lows at night.

    MOST OF ALL, HANG IN THERE Y'ALL CAN DO THIS!!!

    sorry for the long reply.
     
  2. Ashti

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    You are right - good memory! I just looked it up on page 100. I read it a long time ago and completely forgot about it.

    Hanas is such an interesting book. When DD was newly diagnosed I could read it for hours. I'm putting it back on the bedside table!
     
  3. Melissata

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    I don't believe that it is true anymore that most insurance companies do not cover CGM's. There are lots of people on this site that were able to have one covered by insurance. The CGM companies know how to ask the right questions in order to get the approval.
     
  4. Leah

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    First of all, welcome to CWD!!!:cwds:

    I have experienced that the first couple months w/ D can be very overwhelming. The one thing that has help me keep my Blood sugar undr control is my CGMS. Just a suggestion... but it has been provn to work!:):):)
     
  5. roo'smom

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    Sorry, if this has already been brought up - I skimmed through about page 14 and didn't see it mentioned anywhere, but isn't Levemir usually given twice a day? Since she is getting it at night, perhaps that is why her wake up number was on the lower side (86 I think), but then it wears off over the course of the day, and that's when you're seeing the higher numbers. Just a thought from someone who's not good at crunching numbers;)
     
  6. wilf

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    This is one of the reasons I've recommended going to giving Levemir in the morning (rather than at night). A morning injection maximizes the amount of Levemir which is working during the day and evening (when you need it most) and minimizes the chance of night-time lows..

    Splitting the dose is also a good option.

    From my perspective, giving it at night is the least desirable way to administer Levemir (or Lantus).
     
  7. Tweety8

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    Michelle is so right! Great post :)
     
  8. denise3099

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    Just a quick note: They may give you a blood glucose meter or you can just get it at Walmart. It's called a Precision Xtra meter and it just says it tests glucose with no mention of ketones on the Walmart site. But when you open the box, the literature says you test ketones with the blood ketones strips. the meter is like $15 bucks at Walmart (65 at cvs :eek: ) or free at the endo. the stirps are another story--they are veryveyrvery expensive, like 65 for a box of 10! If you have a flat copay then great, but if not, lots of ppl buy those on ebay for 15 bucks for a box. So bet. Walmart and ebay you'll have a meter and 10 strips for 30 bucks. I wouln'd wait for your next appt. Order the meter and buy the strips on ebay. So much more convinient than pee-tones. :D
     
  9. KHM

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    Lindsay is quite a performer; she loves the pee-tones euphemism so much she's decided she'll start a girl "rock" group (all T1 members) Called the (wait for it...) SweetPea Tones.... do you think I should call Disney and see if they're interested?
     
  10. KHM

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    Makes me wonder why morning administration or twice daily isn't the standard out-of-the-blocks recommendation for either of them. Hmm.

    At any rate, just when things begin to take form, they shift again--after last night, I'm not at all sure what we're looking at. She was 395 at midnight, we checked her bg pretty much every 30 minutes; she eased down to 261 by 3:15 and I was confident enough about her rate of decline to go 2 hours without a check: at 5:15 she was at 102; too low for a morning I know she's going to sleep till 10 or 10:30 for all of the blood checks and pee-tones overnight. I got her back to 120 by 6 AM and gave her some wheat thins with peanut butter and she kind of bounced back and forth between 170 and 110 until we called it a night at 8:30 when she was 187. Breakfast, lunch and their insulin and we've been coming steadily down and are now at 100--.

    We'll see how the rest of the day goes.

    I think this is what you call chasing numbers?
     
  11. denise3099

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    lol, re pee tones!

    Wow, about the bs. do you think if you hadn't given the crackers, by 6 or 7 she would have been down to like 50 and rebounded high all day? You seem to have caught the low, treated it, and averted an all day rebound of highs. That type of drop overnight seems to indicate LESS basal. (But I have really have no idea, I'm just tossing that out there.)

    You must be soooo tired. Hang in there. It will get better and you WILL sleep again.
     
  12. JJsMomma

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    We started splitting our Lantus a month or two ago and aside from one or two hiccups, his numbers are fantastic at night....7-9 across the board. And at Wilf's suggestion we do the bootie shot...
     
  13. wilf

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    Actually, Heather is the BootieQueen! :D
     
  14. wilf

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    Yes, you could call this "chasing numbers" though I'm sure there are a number of different interpretations for the term.. :rolleyes:

    That precipitous drop of 160 points between 3:15 and 5:15 am (when you intervened) is what I expect is happening periodically throughout the day and night. They will happen fast (whenever the insulin resistance wears off) because she is so small and is getting so much insulin - I'm glad you caught one so that you could see it..

    Have you guys tried reducing insulin dosages yet?
     
  15. KHM

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    [no comment]

    We gave the Levemir in her bootie two nights ago; she hated it but she was also VERY high at the time and that's when she is the least flexible. Last night we gave the levemir in her thigh. Tonight I'll let her pick between the two (and hope she picks the bootie).

    I think I'm going to begin splitting the dose. Can't hurt. I'll give 5 tonight and 4 in the morning. Stay tuned to the continuing saga of Lindsay and Kathy stay up all night measuring bg...

    I am going to stomp my feet and cry for an order for a CGMS. Which one do I want? I'm thinking when we begin pumping, I really like the Ping but as far as I know that doesn't integrate with any of the CGMS offerings on the market, is that correct?

    Wilf, I haven't made any reductions yet. I think I'm too overwhelmed to navigate through a couple of days of testing should things be bumpy. I'm looking forward to additional information from lab studies and the CGM study the endo is doing. Once I have a clear read on whether something else is going on, what her true bg experience is I will be more confident. In the meantime, we're watching her like a hawk...especially with the news about Trent.
     
  16. wilf

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    Splitting is good :) - when splitting always give the lower amount in the evening, so 4 tonight 5 tomorrow am.
     
  17. KHM

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    Thanks! Will do.
     
  18. frizzyrazzy

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    ping does not integrate yet with anything, but there is talk of a dexcom / animas integration and a talk of a dexcom/ omnipod integration. Neither are soon though. MM is the only one currently integrated. (all still require 2 sites)
    but if you're not going to be pumping yet anyway, you could do with dex or MM - or navigator too.
     
  19. Melissata

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    Stay far, far away from Abbott Navigator right now. People have been waiting 2 months for replacement parts and are unable to use the system. And Abbott will not give refunds even to those only using it for 2 months prior. They say that they are honoring the warranty. No word on how much longer they will be out of stock of everything.
    I am warning about this because you CAN still get a complete system from a supply place. You just won't be able to get any replacements, and that happens to most people fairly often. Dexcom does free trials, not sure about Minimed?
     

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