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Newly Diagnosed

Discussion in 'Parents of Children with Type 1' started by danshelpmeet, Mar 12, 2017.

  1. danshelpmeet

    danshelpmeet New Member

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    Mar 5, 2017
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    Our 9yo daughter was diagnosed Type 1 almost two weeks ago after going into DKA. It came on so suddenly and was very scary. So we are just at the very beginning of our journey. Her blood sugars are still not close to our target number, and adjustments are constantly being made. We are still in a fog and trying to breathe, but also are trying to learn what we can so we can keep our daughter healthy. We have 7 other children at home, along with 2 married. They all have been very supportive and caring towards their sister.

    So now we are trying to figure the best ways to eat, be active, manage daily life and outings, and obtain supplies for the best price. Any advice or helpful hints are appreciated from those who have gone before us.
     
  2. Christopher

    Christopher Approved members

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    Hello and sorry you have to be here. The early days are very tough but it sounds like you have a lot of support so that is a great thing. The other positive thing is that there are a lot of great resources and technology out there to help you manage this illness. I am listing some good books below that I would recommend. I am also including a link to a (by now very old) thread that I created that has some good info from all the smart people on this site. Other than that I would just say take things slow, one day, one meal, one blood glucose (bg) number at a time. Learn everything you can about the day to day management of Type 1. Accept that you will have good days and bad and just learn from the bad and enjoy the good.

    Danielle has been dealing with this disease for 10 years now and while there have been tough times, she has never let it stop her from doing whatever she wanted. She has been active in sports, has gotten great grades and has been accepted to her top 3 college picks. My point is that your daughter will be fine and should have a full and happy life. But at an early age she will take her cues from you. How you approach this illness will shape how she does.

    Hang in there.....


    Here is the link:

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




    Here are the books:


    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: Mar 13, 2017
  3. MomofSweetOne

    MomofSweetOne Approved members

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    Welcome to the club we all wish we weren't a part of! The first six months or so are like drinking from a fire hose. It does get better, but never easy.

    My advise as the mom of a 17 year old, dxed at 11, is to 1) teach your daughter early while you're still an important figure for advice. We took Type 1 University together at age 12, and it was great for both of us http://type1university.com/, and 2) be ready to step in and help even through the high school years as burn-out hits, and 3) surround your daughter with older mentors who will model the need for tight control, get situations where as much as we care, we don't live it, etc.

    Editted to add: If your team hasn't already helped you order a Dexcom cgm, do so. It's the biggest game changer in diabetes management, and every kid should be sent home on one IMO.
     
  4. MomofSweetOne

    MomofSweetOne Approved members

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    This is a perfect description of normal life with diabetes, unfortunately. Your daughter is probably running high while her team waits for the honeymoon to kick in; otherwise bad lows can and do occur. But we were led to believe at diagnosis that once we could get her insulin doses set, and then she'd be in range most of the time. Not hardly until adulthood, and for a female, there are still monthly adjustments. My daughter is in range more than not, but it's a rare day we don't see a 200 or higher despite her doctor saying we're one of a handful of families with tight control.

    To maintain good control, you (and your daughter) will need to learn to analyze numbers and make adjustments. If you wait for your doctor to do so, your daughter will not feel great and complications can start to set in. The drs also don't have the story behind the numbers we have, so they don't know when to toss out data, etc. We love our endo, but her "tweaks" generally make things worse. Think Like A Pancreas is the best for explaining in simple terms how to see what the numbers tell need adjusted. You're going to want to have a firm grasp on adjusting insulin before your rollercoaster through girl puberty strikes.....but maybe you'll be among the first families who get to experience it on an automated insulin delivery system as the first hits the market next month with many more to follow in the next 2 years. If so, be ever so thankful your daughter was dxed now, not even last year!

    I don't mean to scare you off with this article, but it will lift some of the guilt we can hit ourselves with as it truly highlights how many factors are at play in managing diabetes. Lows and highs happen. The cgm helps to ward off the extremes.

    https://www.diabetesdaily.com/downloads/22-factors-that-affect-your-blood-sugar/
     
  5. samson

    samson Approved members

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    So sorry for your daughter's diagnosis. The first six months feels overwhelming, but gradually a sense of normalcy returns -- hang in there! Use the urgency you feel now to learn all you can. The book suggestions are excellent; also try to develop checklists for what to take when leaving the house, figure out systems to track blood sugar, insulin and food intake (like a food journal), and push for a CGM as soon as possible.

    The hardest part is the beginning because you need to learn all new skills like weighing food, counting carbs, tracking insulin on board and figuring out how to calculate new dosage rules. For a time, other things in life do take a back seat. We canceled some family trips, stuck closer to home, and simplified our diet to a few, repeatable foods at the beginning because it was so mentally taxing trying to incorporate all these extra steps into daily life. That's okay -- you will get back to your normal life routines soon enough. Over time these ways of thinking require less concentration and become more like a habit. And spending all the time in the beginning learning good diabetes management habits does pay off in the end, because managing your daughter's diabetes will become second nature.

    Also know that the definition of "perfect" is very different for someone with type 1 diabetes. Managing diabetes is like riding a bucking bull or surfing a monster wave. Unlike any other medication, it will constantly need adjusting and tweaking in the moment. The disease continues to be wild and chaotic; but overtime you get better at sensing the patterns, riding out the highs, and anticipating what's coming.
     
  6. barbiduleny

    barbiduleny Approved members

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    Sorry about your diagnosis... it's hard to believe it now, but as this becomes the new normal, you'll find yourself forgetting that there was a life pre-diabetes, and it will become second nature.

    re: Tips. I'll stick to the practical stuff: Technology makes a huge difference, getting a Dexcom (Continuous Glucose Monitor) is actually something i would get on right away. It allows you catch highs and lows much earlier, to figure out patterns and adjust ratios faster. It alarms at night for lows so you don't have to deal with the dreaded 3 am call to do a BG check and the anxiety that your daughter may go low. You can remotely monitor BGs.

    I'd advocate to get an insulin pump asap as well: Pumps just make treatment easier, in my experience it allows you to refine insulin doses, takes away a lot of the mental calculations. It takes a while to get this stuff approved, so even if your endo is not too hot, it's prob worth pushing for it.

    Sticking to a routine in terms or meal time, foods can be really helpful at first: when you make this stuff predictable, you can start understand how your kid reacts to insulin at specific times, to certain foods and it makes it overall easier to stay in range. Then you can start feeling more adventurous, trying out new foods/meals.


    Hope it helps!
     
  7. danshelpmeet

    danshelpmeet New Member

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    Thanks everyone. The shock is finally wearing off and the fog lifting a bit. My mind is understanding a lot more when I read through threads. I was on a Facebook page and got an instant message from another mom. Even though she lives many states away, we found that we run the same circles, have the same religious convictions and her daughter is newly diagnosed. It was a breath of fresh air to sit and chat with her.

    Thank you for all the book recommendations. I am having my older kids read through the pink panther book so they have an understanding of the what's and whys. I will check out the other one from the livraary or amazon. My mind is now in a place where I'm ready to research and retain.

    It seems like we are starting to make some progress in getting her numbers closer to target. She has been sailing along in the 200-400 since we came home. The last 2 day we have started to see some 100s. It feels good to see things starting to balance out a bit.

    Thanks again for the welcome,advice and links. I'm not a support group person in general, but I can't imagine walking this disease alone.

    The cgm is something we have talked about already. What "scares" me the most is becoming to OCD with the numbers and overs analyzing them. Yet I also look at our coming activities such as a family camp and wonder how I can let her run and play with others without chasing her everywhere making sure she isn't going low or high.
     
  8. MomofSweetOne

    MomofSweetOne Approved members

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    Exactly. You can be as OCD or not as you chose, but the device allows the wearer and parents more normalcy. Sitting outside a bounce house, hoping against hope that your child is paying a little attention to their body's messages, is the pits. Anxiety overload. The same event with a cgm allows the parent to sit on the sidelines and enjoy chatting with other parents, knowing you or they or both will HEAR the low. They don't end up sidelined, recovering from the dreadful feelings that accompany 50s or below. You can also set the LOW alarm high enough to be able to ward off a low with food during high activity. It's worth its weight in gold for nighttimes. Sleep is still interrupted - hopefully in the next year, the new products out will manage nighttimes - but the quality of sleep is so much better than without in my experience. I dream of things other than diabetes most of the time. Occasionally, a cgm alarm works its way into a dream and leaves me befuzzled when I see the actual device. :smile:

    Edited to add: Most people are pretty ocd over the numbers the first few days until the novelty wears off. After that, it usually becomes a useful tool to find patterns that then lend to precious periods of time when the device is silent due to accurate settings/doses so that no one is having to focus particularly on diabetes.
     
    Last edited: Mar 16, 2017
  9. danshelpmeet

    danshelpmeet New Member

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    Glad to know I'm not the only one who dreams like that!
     

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