- advertisement -

New to type 1 with a 7 month old

Discussion in 'Introductions' started by mrcool, Mar 2, 2009.

  1. Reese'sMom

    Reese'sMom Approved members

    Joined:
    Jan 18, 2009
    Messages:
    1,294
    Welcome, and I am sorry you are going through this. But on the bright side, you have found a great place to come and you will always know you're not alone in this, you will learn a lot, and you can vent, vent, vent whenever you need to.
     
  2. Judith

    Judith Neonatal Diabetes Registry

    Joined:
    Oct 30, 2005
    Messages:
    90
    Infant with diabetes

    First ...... take a deep breath. Your son will be fine - really! It will take work and planning on your part, but he can have a normal life, can do and be most anything. My son was diagnosed at age 8 weeks; he is now 23 years old. He lives on his own, has a good job, has attended college, has a girl friend, plays Ultimate Frisbee on travel teams, etc etc etc.

    You can see a picture of him, with my Russian "son" with diabetes, when they were camp counselors in 2007:
    http://www.childrenwithdiabetes.com/gifs/people/DaveVanya2007.jpg

    Here's a picture of him in high school - captain of the track team, enroute to state finals 2 years in a row:
    http://www.childrenwithdiabetes.com/gifs/people/DaveHurdles4-8-03.jpg

    I know hundreds of successful kids/teens/adults living well with diabetes.

    Re: specifics of dealing with a diabetic infant, I have a number of tips to share. Here are a couple:

    When Dave had lows as a baby, I noticed he'd look pale, especially around the mouth. His cry was different - higher in pitch, more irritating. He often had a glassy-eyed look. He felt "soft" when I held him, due to decreased muscle tone. He sometimes broke out in a sweat, particularly on his head. You will soon learn your son's signs.

    Re: treating lows, I found that strained baby food bananas brought Dave's blood sugar up very quickly. Even when he was so low he was combative and refusing everything else, he'd take the bananas. I used a soft spoon, so if he bit down he wouldn't break a tooth. The Gerber Stage 1 jar is 15 grams of carb. (Your son may need somewhat less than 15 grams now for treating lows.) I kept containers, with soft spoons attached with a rubber band, in the cars, at school, at home, etc. The small tubes of cake decorating gel work well too. Just be sure to use WHITE, as the food coloring in the others is very intense and does not wash off! (as we found out - Dave looked like a Smurf for several days!)

    I would urge you to contact the group at the University of Chicago who are testing for monogenic diabetes. It usually shows up before 6 mons of age, but occasionally not until later. Email l-philipson@uchicago.edu (That's lower case "L", not a numeral one in the address). Read about neonatal diabetes at www.monogenicdiabetes.org My son was tested by Dr. P, was found to have a type of monogenic, but not one that responds to pills. At least for now, he continues to take insulin. The testing is done on a saliva sample, so is painless for your baby. It's completely without charge to you, is done by mail, and postage is paid both ways. It's worth a try...

    Please feel free to email me at JudithCWD@gmail.com at any time. For most any situation you'll encounter, I've "been there, done that". Hope to see you in the parent chat at CWD too. You are not alone.

    Judith

    Mother of David, 23, diagnosed at age 8 weeks

    Pediatric Nurse Practitioner
    Certified - Advanced Diabetes Management
     
    Last edited: Mar 3, 2009
  3. Judith

    Judith Neonatal Diabetes Registry

    Joined:
    Oct 30, 2005
    Messages:
    90
    Infant with diabetes

    Another suggestion: I'd urge you to obtain a Precision Xtra meter and special strips for testing BLOOD KETONES. It's so much easier than trying to test urine in an infant, and the information is much more up to date, much more useful. It's essential during any illness, since it lets you know what's happening in the blood at the moment of testing, rather than in the previous several hours while the urine in the bladder was being produced.

    Read about Precision Xtra meter here: http://www.childrenwithdiabetes.com/d_0i_191.htm

    Precision Xtra ketone strips: Order by calling 1-877-263-2849
    NDC code is 57599-0745-01 and the UPC code is 0-93815-70745-5.
    Give that information to your local pharmacist to help with the order

    Your endo (diabetes doc) may have free samples of the meter to hand out, or you may be able to obtain one by calling Abbott at 1-800-527-3339. Be sure to tell them you have a newly diagnosed infant.

    Judith

    Mother of David, 23, diagnosed at age 8 weeks

    Pediatric Nurse Practitioner
    Certified - Advanced Diabetes Management
     
  4. mrcool

    mrcool Approved members

    Joined:
    Feb 24, 2009
    Messages:
    349
    Thanks to everybody for the encouraging words. More than anything else, it helps seeing that others have managed and have managed well. Right now we're doing Lantus and Novolog based on a sliding scale (we give insulin depending on what Rohan's blood glucose level is, not factoring in what he would eat) and it's not working very well. It is hard to predict what a baby will eat, but still....In the night he'll go to sleep with 300, be 300 at 2 a.m. and then 80-130 in the morning. Such a huge drop....
     
  5. Cookie Monster

    Cookie Monster Approved members

    Joined:
    Jan 5, 2009
    Messages:
    131
    Our son is currently 11 months old and has been diabetic since birth (not Type 1 but presentation and treatment are pretty much the same). He is on an Animas pump (they have the smallest doses so the best control in young children) and we have different rates throughout the day to cope with the daily fluctuations. We have a high rate overnight then drop it in the early hours to try to prevent the lows in the morning. He is very much a moving target so keeps us on our toes but the pump has been excellent.

    If you have any questions just ask.
     
  6. SarahsMum

    SarahsMum Approved members

    Joined:
    Dec 30, 2008
    Messages:
    47
    Im replying a bit late here but have been offline.

    Like Cookie Monster my DD has been diabetic since birth she doesnt have "type 1" as such but treatment is the same.

    We are using an Animas pump due to the smallest rate of delivery and use various rates through the day.

    The biggest thing you find with infants is there levels flucuate very quickly,we run higher pump rates in the day than we do at night to avoid early morning hypo's

    Hang in there, it does get easier as time goes on and you learn a whole new appriciation for life
     
  7. RosemaryCinNJ

    RosemaryCinNJ Approved members

    Joined:
    Mar 9, 2008
    Messages:
    3,571
    My Amanda was 13 months old when diagnosed. She was very sick and in DKA and ICU.
    For now the best advice I can give, is stay in close contact with your endo or CDE. It is very overwhelming at first but I promise you, in time it will get easier when you get into the routine. Is your baby pumping? Reach out for support...and you will find that here if you need it.. Welcome to CWD.
     

Share This Page

- advertisement -

  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.
    Dismiss Notice