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Newly diagnosed

Discussion in 'Introductions' started by Mommyof3, Jan 18, 2009.

  1. Mommyof3

    Mommyof3 New Member

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    Hi everyone, my daughter Paige (11 years old) was just diagnosed with type 1 on Dec. 9, 2008. It has been a very tough road so far. I feel like I worry about her every second of the day. Her plan right now is 2 shots per day (mixing novalog and NPH) mone in the morning and one before dinner. As I am sure most of you know that means a very regimented eating schedule for Paige. She is eating 70 carbs for breakfast, lunch & dinner and a 15 carb morning snack, a 30 carb afternoon snack and a 15 carb before bed snack. She is having a very hard time with the meals as it is hard to find much variety for her (especially with the snacks).
    I have been reading about children using CGM on this site. We have been told you have to be 18 to get one. Could someone please tell me how you go about getting one for a child? We have anthem insurance.
    Any advice in general would be greatly appreciated.
     
  2. Becky Stevens mom

    Becky Stevens mom Approved members

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    Hi Mommy of 3, Welome to our family. I'm sorry you had to join us but this is a great place to come for support and advice and to talk to people that understand what you're going through. My son Steven was on the same regimen as your Paige for the first 4 years after diagnosis. You are right about it being very regimented as far as how much she can eat and when she can eat it. You may want to switch her to lantus and novolog pens that way she can eat when she wants to and you just cover her carbs with the novolog. There are kids in here with CGMS that are very young. We dont feel the need to have one yet but may in the future. Have you done any research on pumps yet, there are alot of kids in here on pumps as well. Come join us in the parents chat room anytime, theres usually someone around
     
  3. miss_behave

    miss_behave Approved members

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    Hey there, sorry to hear about your diagnosis, but glad you found us!

    If you find the NPH too restrictive (which most do) I suggest you talk to your Endo about switching to Lantus. The best thing about Lantus versus NPH, is that you can eat whatever you want, whenever you want and just dose insulin for carbs eaten. It makes life a lot more flexible. NPH is also notorious for its unpredictable peaks. Needless to say I (and many others on this board) am not a fan.

    As for the CGMS, there are parents with babies/toddlers on the CGMS. Get the Endo to write a letter of medical neccessity and then fight the insurance company. Many parents have finally got coverage after submitting appeals several times. However, it may be a long hard road of sending studies etc to try and get coverage. MiniMed also has a pediatric CGMS approved for 7+ so thats a good start.
     
  4. Christopher

    Christopher Approved members

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    Hello,
    I just wanted to say welcome, but sorry you have to be here. You have found a great site for support and information. The early days are very tough, you are overwhelmed emotionally, sleep deprived, and scared. But over time you will become more comfortable dealing with all the things you need to do to live with this illness. You will find a "new normal" believe it or not and things will get into more of a routine.

    Here are some books you may find useful:

    The "bible" of childhood diabetes, "Understanding Diabetes" (aka The Pink Panther book) by Dr. Peter Chase of the Barbara Davis Center at the University of Colorado.

    Think Like a Pancreas: A Practical Guide to Managing Diabetes with Insulin [ILLUSTRATED] by Gary Scheiner, Barry Goldstein

    Sweet Kids: How to Balance Diabetes Control & Good Nutrition with Family Peace, Second Edition by Betty Page Brackenridge, MS, RD, CDE & Richard R. Rubin, PhD, CDE. Published by the American Diabetes Association, 2002. 250 pages. Softcover. US$16.95.

    Type 1 Diabetes: A Guide for Children, Adolescents and Young Adults -- and Their Caregivers by Ragnar Hanas, M.D. Published by Marlowe & Company, New York, 2005. ISBN 1-56924-396-4. US$34.95.

    Not sure what your school situation is, but here is a link to a thread that has a lot of info about dealing with schools.

    http://forums.childrenwithdiabetes.c...ad.php?t=20042


    Finally, in addition to the forums there is a chat room here where you can talk to other parents in "real time".

    http://chat.childrenwithdiabetes.com...g/LetsChat.jsp

    Hang in there :cwds:
     
  5. Mommyof3

    Mommyof3 New Member

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    Thank you all for your kind words

    I see many are recommending Lantis over NPH. I know when you use lantis you take a shot everytime you eat, meals or snacks, but what I don't know is do you wait until after you have eaten the food (and calculate how many carbs you ate) to take the lantis shot?
    Some people have made the comment that once you are on lantis you can eat whatever you want. I know this can't be true... I am sure you still have to make sensible choices.
    This may sound silly but will my daughter ever be able to have cinnamon toast crunch cereal, poptarts, cinnamon rolls, etc... ever again? Obviously, I want to do what is best for her but she feels like she can't have any of the things she used to be able to have that were her favorites.
     
  6. Christopher

    Christopher Approved members

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    Just to clarify, Lantus is a long acting insulin that is given once a day and lasts for 24 hours (usually). Other types of insulin, like Humalog, are fast acting and are given to cover carbs at meals. When the fast acting is given (before or after eating) depends on many things, like the age of your child and what your endo suggests. For a toddler, you may not know how much they will eat at any one meal so some people give it afterwards. For an 11 year old I would think you will know pretty well what she will eat during a meal so you would probably give it prior to eating.

    As for your question if she will ever be able to eat poptarts, etc, the answer is of course she will. However, you will find that certain foods will spike her blood glucose faster, longer, etc than other foods. So you may need to experiment on how to cover those foods with the insulin. Obviously, you want her to eat healthy, but we all deserve treats every once in a while, don't we? :)

    Many people use NPH with much success, but for others it is restrictive. If you are having trouble with your current regimen you should talk to your endo about ways to be more successful with what you are currently using, or trying something different like a Lantus/Humalog regimen to see how that works for you. Just my 2 cents. Hang in there..... :cwds:
     
    Last edited: Jan 19, 2009
  7. Becky Stevens mom

    Becky Stevens mom Approved members

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    Hi its me again Momof3, Your daughter will be able to eat goodies just like everyone else. We have candy day at our house once a week and let Steven pick 2 small pieces of candy that we figure into his meal to cover the carbs. As Chris already told you, lantus is a once a day shot usually, some children do better with 2 shots per day of the lantus then you figure the amount of carbs that your daughter would eat and give her a shot ( bolus ) of a fast acting insulin like humolog or novolog usually with an insulin pen that has very small needles.
     
  8. Connie(BC)Type 1

    Connie(BC)Type 1 Approved members

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  9. miss_behave

    miss_behave Approved members

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    She most certainly can. The only difference for eating between a diabetic and a person with a fully functioning pancreas is that the diabetic needs to take their insulin by injection. As long as you cover the carbs correctly, you can eat whatever you want. No foods are off limits.
     
  10. Mommyof3

    Mommyof3 New Member

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    Dr. changed her plan...

    Help! We went to the endo yesterday and they changed Paige's plan. Now she is on a Novalog pen (after meals) and a Lantis pen (10pm lasts 24 hours). Okay now for the problem... last night when we gave her the first Lantis shot she cried. She says it stings really bad then she complained that her arm hurt after. She has pleaded all day to go back to her old regimen of mixing novalog and NPH. She is scared to death to have the lantis shot. Please any advice on the Lantis pen and how to make it not sting/hurt. Thank you
     
  11. Becky Stevens mom

    Becky Stevens mom Approved members

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    Hi mommyof3 its Becky again, I just saw this tonight, Im so sorry that the lantus hurts Paige. Some people say that is does sting. We have always used Steven's butt for the lantus shots I think there are less nerve endings there. Also you can have an ice pack handy for after shots and I will sometime massage the area after a shot if Steven tells me that it hurt. I hope things are going better for you. Let us know
     
  12. Flutterby

    Flutterby Approved members

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    warm up the insulin a bit.. it may help to use a vial of lantus instead of the pen.. before you give the shot (whether its pen or syringe from a vial) hold it between your fingers and let it warm up a bit so it doesn't sting.. cold lantus does have a stinging effect..we always gave lantus in the upper bum, below the love handles.. K never complained BUT she was only on Max 1u..

    TO answer an earlier question.. My daughter, who is getting ready to turn 6, has been using a cgms for over a year.. it is FDA approved for 7 and older..you do have the power to choose the endo, if your endo doesn't seem helpful or like they are including you in decisions, if you CAN switch, go ahead and do it.. the endo's work for you.. there purpose is to train you so that you can make decisions in your daughter's care.
     
  13. cwdAdmin

    cwdAdmin Administrator Staff Member

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    Off-label Reminder

    Lantus® is for adults with type 2 diabetes or adults and children (6 years and older) with type 1 diabetes who require long-acting insulin for the control of high blood sugar. Although not FDA-approved for children under age 6, health professionals sometimes still prescribe Lantus.

    Also, Continuous Glucose Monitoring Systems (cgms) have suggested ages for use and are sometimes still prescribed by health care professionals for unapproved use.

    Before using diabetes products/supplies outside the approved age range, please discuss options, benefits and risks with your diabetes health care team.
     
  14. juliesmom

    juliesmom Approved members

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    My daughter had the same problem. We have been giving to her in her sleep for the last two months. We longer go thru the struggle of giving her shot to her. It has helped us to pull it at bed time and let it warm up by the time she is in a deep enough sleep the Lantus is ready
     
  15. Mommyof3

    Mommyof3 New Member

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    Thanks to all who have helped

    Our new favorite product...... Emla cream! Wow this stuff works. Paige doesn't mind getting the Lantis shot anymore.

    With the recent recall on peanut butter crackers, any good suggestions on foods that could be kept in her kit for treatment of low? Our Dr. says use juice box followed by a 15 carb snack with protein. That is easy if you are at home but if you are out and need to treat quick... peanut butter crackers were easy to keep on hand. Any ideas?
     
  16. Julia-Mommy To a T1

    Julia-Mommy To a T1 Approved members

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    Hi Mommyof3. I too am a newbie but welcome!! :)

    For lows, you could try small candy like skittles or smarties. Those seem like they would be easy for her to keep on hand.
     
  17. Reese'sMom

    Reese'sMom Approved members

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    Cheese and crackers (those little ones in the plastic container) are a good alternative to the peanut butter crackers. I also keep bags of mixed nuts and crackers in our kit for now, but I know my son would much prefer peanut butter crackers so I hope they'll be back on shelves soon.
     
  18. kassie

    kassie Approved members

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    We had the exact same problem. Here's the sum of the advice i found (including some advice from a sanofi-aventis rep - they make lantus)

    1. room temp
    2. inject in butt
    3. cick in a unit or two at a time and pause between clicks
    4. pause before pulling the syringe out
    and the one that really worked for us:
    5. make sure there is no lantus on the outside of the syringe before injecting (after you prime the needle and some comes out). This is the one that finally worked.
     
  19. dawnoftexas

    dawnoftexas Approved members

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    Hello fellow mommy of 3

    Hi mommy of three.. I ‘m also a mommy of three ( girls ). My daughter was diagnosed at age 11 on Aug of 07’ Sending my love and support your way.:cwds:
     
  20. iluvmhp

    iluvmhp Approved members

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    This is what worked the best for us...go real slow!!! My dd hated the lantus shots, just hated them, but the steps above helped a lot!

    Welcome and you found the right place!
     

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