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Hello from the Midwest

Discussion in 'Introductions' started by BarbDwyer, Jul 8, 2014.

  1. BarbDwyer

    BarbDwyer Approved members

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    Hello,

    I've been lurking but thought it was time to register and post. My son was just diagnosed a month ago. He is 13yo. He is taking novolog and lantus. He was very very sick (DKA) when the diagnosis was made. He'd been quite sick for awhile and when I finally got him to the clinic (very guilty about waiting) they immediately flew us to the children's hospital 90 miles away. There is such a steep learning curve. I get more overwhelmed each day - doesn't seem like I will ever learn enough to keep his numbers right! We have not really changed our diet at all and I'm guessing we should :p His BG numbers are all over the place and I can't yet make heads or tails out of how different foods affect his numbers. He started out on larger amounts of insulin and he keeps needing less and less, which seems a little backwards but whatever it takes I guess. I imagine it will eventually swing the other way again. I don't even know enough to ask questions really but I am getting a lot out of reading all the posts here.

    One thing that seems different for Luke is that we were told to eat and count up the carbs - and then take the insulin. It sounds like most people take the insulin before they eat?? We were not told to do after meal levels so I have no idea what they are. We test morning, before meals, bedtime, middle of the night as standard and also before/during activity and if he is feeling low or off. He seems to be really sensitive to exercise. We went swimming and the kid was stuffed with trying to eat enough every 45 minutes to keep his blood sugar up. Poor kid eats more now (including that junk juice and fruit snack packets) than he ever did before, lol.

    Long post - sorry - *wave* and look forward to getting more involved in such a knowledgeable group.
     
  2. Christopher

    Christopher Approved members

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    Hello and welcome to the site. A few thoughts:

    The early days are very tough and you will have a whole range of ever changing emotions. Just try and take things one day at a time and over time you will become much more comfortable doing the things you need to do to fit diabetes into your life.

    Let go of the guilt. Almost everyone here missed the signs and did not get their child into the hospital until they were pretty sick.

    I don't think there is any need to drastically change your child's diet. They trick is to figure out how much insulin it takes to "cover" the carbs they are eating. This involves a lot of trial and error. It also hinges on knowing, as close as possible, how many carbs they are eating at a meal. Many of us use a scale and in that way you can know the exact serving size and some scales even calculate the carbs in each food item.

    One reason he may be needing less and less insulin is that his pancreas may still be partially functioning. This is called the "honeymoon period" and it can last a little while or for a long time.

    In the begining I guess it is OK to give insulin after the meal, but that is normally done in very young children, when you may not be sure how much they will actually eat. But in a normal situation you want to give the insulin early or what is called "pre-bolusing". This way, since the insulin usually takes about 15 minutes to start working, and most foods start right away, the two can be matched up and a spike in blood sugar won't occur.

    Finally, here are some books and also a link to a thread on this site that may be helpful. Hang in there.

    http://forums.childrenwithdiabetes.com/showthread.php?68171-10-Things-Your-Endo-Never-Told-You




    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,
    http://www.amazon.com/Type-Diabetes-.../dp/1569243964


    Understanding Diabetes (aka The Pink Panther book)
    by Dr. Peter Chase of the Barbara Davis Center at the University of Colorado.
    http://www.childrensdiabetesfdn.org/publications.html

    Think Like a Pancreas: A Practical Guide to Managing Diabetes with Insulin
    by Gary Scheiner, Barry Goldstein
    http://www.amazon.com/Think-Like-Pan.../dp/1569244367

    Sweet Kids: How to Balance Diabetes Control & Good Nutrition with Family Peace
    by Betty Page Brackenridge, MS, RD, CDE & Richard R. Rubin, PhD, CDE. Published by the American Diabetes Association, 2002. 250 pages. Softcover.
    http://www.amazon.com/Sweet-Kids-Bal.../dp/1580401244
     
    Last edited: Jul 9, 2014
  3. Sarah Maddie's Mom

    Sarah Maddie's Mom Approved members

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    What you describe sounds pretty normal. A lot of kids start out needing a ton of insulin at the time of dx, then the taper down as those bgs, which had been elevated for weeks or months, are back in range and the dose may drop again as the pancreas gets a break from all the strain it's been under at which point your son may enter the "honeymoon" phase when he'll need possibly even less insulin.

    The best tool to try and make sense of his numbers, short of a CGM, is your log book. Log everything for a while - what he ate, how much he exercised, even the weather if its exceptionally hot and he's out of doors.

    Last thing - on injecting after eating. Generally that's only advisable for really young kids who may not eat everything. I'd call and ask your practice about, at least at a minimum, bolusing just before, if not pre-bolusing (ideal).

    I really like Hanas' book that Chris suggests ^^

    Good luck!
     
  4. Mommy For Life

    Mommy For Life Approved members

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    Great advice from Christopher and Sarah. I just wanted to add something about the swimming. If you son swims like my daughter, seeing bg#s crash is part of pool time. We will let our daughter drink a Gatorade G2 drink throughout the time she is swimming. Sometimes we will give her less insulin with a meal if we know she is going to be swimming or very active. If her bg numbers are in the low 100s we will often give her 10 or so uncovered carbs, just to be sure she doesn't tank.

    The early days are hard. We all know the emotional rollercoaster you and your family are on. I promise it will slow down and you will not feel so overwhelmed. Time, knowledge, and experience will give you the confidence to make diabetes related decisions.

    Hang in there. If you have any questions, even if you think they are silly ones, we are all here.
     
  5. BarbDwyer

    BarbDwyer Approved members

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    Thank you everyone and much thanks for the book recommendations. I do have a scale and we measure things. I had been counting calories like that since January to lose weight (which I've quit doing - my gawd - can only do so much counting, haha) so the adjustment to counting/weighing was not as much of a shock as it could have been. I feel we have a fairly good handle on counting the carbs. Will speak with them about the timing of the insulin at the next appointment.

    We log the carbs but not what he eats so I will start doing that - to see if we can see trends.

    The swimming - oh my goodness. Lots of uncovered carbs when he swims and we do lesson the insulin but since the last time we went they have greatly reduced the carb/insulin ration (is that what it is even called?) so hopefully it won't be quite as bad next time. He burns through them so fast. I will try the drinking throughout the swim time next time. That is a good idea. Will have to raise hell at the pool to allow him to have a drink in there, lol. That is his biggest frustration right now - I won't let him go to the pool without me and I work during the day so his pool time is really limited and going to the pool with friends was his major summer activity. I keep telling him he'll have more independence once we get rid of so many lows.
     
  6. Snowflake

    Snowflake Approved members

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    I like that spirit!

    If the pool gives you any pushback, come back to the Parent forum here for advice. This is an accommodation that a public facility should make for your son with no fuss. My DD takes swim lessons at a city pool with a no-food-no-drinks policy, and we communicated beforehand that we had to be able to offer her juice at the side of the pool to treat lows/falling bgs, which we see a lot of with swimming also. The managers at the pool facility were totally fine with it.
     
  7. MamaC

    MamaC Approved members

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    That won't hold if it's a non-public, i.e. membership pool. But in that case, you could appeal to the manager or the Board of Directors.
     
  8. mwstock

    mwstock Approved members

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    Hello Barb, sorry to hear about your sons diagnosis. My son has had type 1 for five years, he was diagnosed at four years old and is now nine. Take one day at a time. Most likely your son is still in the honeymoon period where his pancreas is still producing some insulin, so that can be challenging with trying to manage the blood sugars, because that could be hit and miss. Activity can be challenging. My sons and I do a lot of swimming and bike riding. If my son is swimming really hard, he can go low. I also would suggest checking blood sugar before getting in the pool. Per our last visit with our CDE, she said you cannot feel lows in the pool. You always want to have snacks on hand, but you can also reduce the mealtime insulin if you anticipate that your son will do activity right after a meal. We still give insulin right after eating. You never know if your son will eat everything or eat something additional after you have given the dose. At the end of the meal you can count carbs. Carb counting is sometimes more of an art, than a science! There will be times when you give too much insulin, which causes lows and other times where you do not give enough, which causes highs. It is just part of the song and dance! I think the biggest thing for me was learning the difference between basal (long acting insulin like Lantus) and bolus (mealtime - carb ratio - Humalog or Novolog) insulin, making adjustments to those or the sliding scale for corrections. Early on your medical team and doctor will work with you on recommended doses and changes to doses based on blood sugar logs.
     
  9. Mo1

    Mo1 Approved members

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    Hello Fellow Mid Westerner,

    Your learning curve feels very familiar since my DD was diagnosed around 6 months ago. For exercise my daughter hits a lot of lows, I email the CDE frequently to help with adjustments since I am still learning this "song and dance". I am still learning the impact of basal and bolus, especially since we just transitioned to a pump this month. In the beginning, the CDE had me give insulin after my daughter ate instead of before. Later, the CDE recommended giving insulin before, which is what I do now.
    I did not find this web site right away and found that both the JDRF and ADA websites helpful. The JDRF also offers family mentors (other families who have a child with Type 1) and a back pack of Hope for newly diagnosed children.
     
  10. BarbDwyer

    BarbDwyer Approved members

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    Thank you and I'll check those websites out too!
     
  11. MomofSweetOne

    MomofSweetOne Approved members

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    I'm sorry your family has joined our club, but welcome! The first few weeks/months are overwhelming. The amount of information coming at you is phenomenal. I compare it to learning to drive; at first it takes all of your time and attention, but eventually a chunk of it will become almost automatic.

    You've also joined at an extremely challenging age to manage. One of my favorite quotes is from Pumping Insulin by John Walsh: "Hormonal changes at puberty can make this month's insulin program obsolete next month. During growth spurts and puberty, growth hormone and cortisol levels rise. This requires that insulin doses also rise. Covering teen hormones and growth spurts brings humility to the best diabetes clinicians. The most effective advice is to be prepared to adjust basal and bolus doses frequently to keep up with growth."

    My daughter was diagnosed at 11, and we had 1 year before the puberty rollercoaster arrived. At the time, I thought the year was hard, but I recently looked back at her records & marveled at the relatively calm stability that year. I'm glad things will calm down again before she has to manage on her own.

    I really like Think Like A Pancreas by Gary Scheiner for help with dosing decisions. It's an easy read, and my 14 year old has read both it, Pumping Insulin, and also the book by Kaufmann. Sheand I both. felt Think Like A Pancreas was the easiest read and easiest to follow.

    Swimming is one of the fastest BG droppers there is in our experience. With pumping, my daughter now does 50% basal starting an hour before she swims, takes carbs to boost her to 150, and then tests every thirty minutes and takes carbs to get her back to 150. Using this game plan has radically changed her safety while swimming. We try for her to not have IOB as well. When she wears the Medtronic pump, she disconnects and then rehooks up every hour and boluses 50% of her normal basal each hour. (She is currently wearing the pod that we got through Cut-the-Cord.)

    The other thing that compares to swimming for dropping BGs is snow play. We're months from that, but file it away in your mind so that you're not caught unaware and have 40s within 20 minutes like we were. If your son is on MDI, you'll want to reduce Lantus.
     
  12. vgage03

    vgage03 Approved members

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    I like that your doctor told you to give insulin after eating. My son was 3 years old when diagnosed and they told me to give it prior, well no surprise when he didn't want to finish all those carbs. Still at 11 years old he will not finish his plate every time. So quickly I learned to give insulin after he ate and we still do now.
    As far as snacks when he's low obviously he should get a fast acting carb like juice, fruit snacks but also he needs the long acting carb like crackers or bread. Eating protein along with it will help keep his blood sugar up for a longer amount of time.
     

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