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My 2 1/2 year old grandson was recently diagnosed T1D

Discussion in 'Introductions' started by Gma, Apr 17, 2014.

  1. Gma

    Gma New Member

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    Hello. I'm having a terrible time accepting my grandsons diagnosis. I'm guessing we will spend plenty of nights with highs and lows, occasional DKAs, and we will know where everything is at Children's Hospital. Did anyone else go through actual stages of grief when their child was diagnosed? I've cycled through the sadness and anger; I just can't seem to shake the grief. There is nothing good about T1D or any D for that matter. So I am here to shake the grief and accept this new way of life. I hope to learn from all of you who have been there.

    Do all T1Ds have to stick themselves during the night, always?

    Does a diabetes Fr automatically check for, or rule out, Celiac? How common are the two together?

    What kind of emotions spike blood sugar levels? In a 2 year old-- just crying, being told no, tantrums, or more serious things like crying over a scraped knee or broken bone?

    Is 400 during the day/night terribly bad?

    Are there diabetes specific teddy bears or toys for small children?
     
  2. Christopher

    Christopher Approved members

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    I think your feelings are pretty normal when something like this happens. Dealing with this dx is an ongoing process, with many peaks and valleys. Just like with anything else in life, you are going to have good days and bad days. As to your questions:

    1. When you say “stick” themselves, I am assuming you mean test their blood sugar. I think testing at night is a key element in keeping a child with Type 1 diabetes safe and healthy. Not everyone feels the same and you will have to decide what makes sense for your family and grandchild. If your grandson is two, an adult will need to be the one checking him at night. I test my daughter every night, multiple times a night and I have for the past 7 years. Is it tiring? Yes. But it makes me feel good knowing that I am catching high/low blood sugar levels and treating them as soon as possible.

    2. Most Endo’s check for Celiac disease once a year. I believe that since both Type 1 diabetes and Celiac are auto immune diseases, someone with Type 1 has an increased risk of developing Celiac. So it is good to check.

    3. I have not really seen emotions effect blood sugar levels, but I am sure there are members here who will say they have. For me, activity and food are the two main things you should be aware of for your 2 year old.

    4. Try not to think of blood sugar levels as good or bad. They are simply numbers and they are either in range or they are not in range. A bg of 400 is very high and should be addressed as soon as possible.

    5. When my daughter was dx she was given Rufus the teddy bear. She wasn’t interested in it at all, but since your son is much younger maybe he will be. An online search will give you more information.

    My final thought is that regardless of if his parents will be managing his diabetes or you will be, it is important to be well informed. There are several books that have a lot of great information in them and I would recommend you reading them. A few of them are:


    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



    Also, here is a thread that has a bunch of information that may help:

    http://forums.childrenwithdiabetes.c...Never-Told-You
     
    Last edited: Apr 17, 2014
  3. Gma

    Gma New Member

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    Thanks Chris for that wealth of information. I'm happy to hear my feelings are normal, for a minute I thought I was wallowing.

    When I said 'stick' I did mean bg checks. And the bg of 400 is what he tends to spike to during the day/evening. I was thinking that is 3-4x the norm (not good).

    I will have to order and read some of those books, until then I did find a page with diabetes toys, books, etc. This one mentioned Dr Seuss like rhymes. I thought it would be great to read and reread this book with hopes he begins to understand what exactly is happening as well as why he is different that that of his peers.

    A Magic Ride in Foozbah-Land by Jean Betschart, MN., RN., CDE.
    http://diabeteshealth.com/read/1998...abeteseducational-toys-and-products-for-kids/

    Again, thank you Chris for the info. It's a major adjustment. Like now, I'm trying to figure out how to count carbs for his Easter dinner. He's a picky eater and a little of this and a little of that is hard to count.
     
  4. Snowflake

    Snowflake Approved members

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    The first days, and first few weeks, after diagnosis are really overwhelming. Is your grandchild still hospitalized?

    On celiac: yes, most practices check T1s for celiac at diagnosis, and periodically thereafter. The two diseases do run together, but your grandson is not facing overwhelming odds. From what I understand, about 5 to 10% of Type 1s also have celiac (we drew the short straw on that, but it wasn't totally unexpected, as our daughter has close relatives with celiac).

    On your question about what spikes blood sugar: it takes a lot of time and experience to figure that out for any individual child. Your grandchild's endo will spend a lot of time in the hospital and after discharge trying to figure out the appropriate insulin dosing for him. A number like 400 is high and requires attention, but we did see numbers like that more than I care to remember in our first few months after our daughter's diagnosis at age 2. For a 2 yr old, the doctor's first priority will be preventing lows, because toddlers often don't feel them and can't verbalize them as well as older children.

    On bears, as Christopher mentioned, JDRF distributes Rufus the Bear and other comfort items either in the hospital or by mail after discharge. If you haven't been given information already, here's the link to request him http://jdrf.org/get-support/bag-of-hope/

    Best of luck with your and your family's adjustment! This forum, and similar groups and blogs across the web, are an invaluable resource as you adjust to your grandchild's diagnosis.
     
  5. Gma

    Gma New Member

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    snowflake

    He is not in the hospital, they kept him for 3 days. I'm thankful we all noticed his increased thirst and urination and were able to catch it sooner than later.

    Snowflake, how did your child adjust at such a young age? I tend to think a younger age means they will adjust better since they haven't picked up a lot of bad eating habits and because they are so darn resilient.
     
  6. Beach bum

    Beach bum Approved members

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    Hello and welcome to the club no one really wants to be in. You will get some really valuable information here and tons of support.
    To answer some of your questions:
    Did anyone else go through actual stages of grief when their child was diagnosed?
    Absolutely, and it's perfectly normal and healthy. The first few weeks, months were the hardest. But then one day you will find that hey, this isn't normal, but it's our new normal and it's going to be OK. The good days will outnumber the bad.


    Do all T1Ds have to stick themselves during the night, always?
    Yes, you will need to do nighttime checks. Look at it this way, you won't go that long during the day without checking, so why do it at night. You will find that your doctors will probably say it's OK to not test at night (do a late night check), but in my opinion, they do this to lessen the stress of all that has happened. You have to decide how to handle it. You will find there are some days when you test a lot, other days not so much. We now use a continuous glucose monitor (CGM) and that has made a world of difference. I like to equate diabetes to roulette. There are some days that you never know what you are going to get. Highs, lows, or the winning number (being close to your target). DKA once diagnosed isn't a common occurrence because you are able to test and be diligent about monitoring.

    Does a diabetes Fr automatically check for, or rule out, Celiac? How common are the two together?
    It's common now for doctors to check within the first year for Celiac. Like T1, celiac is also autoimmune. Like diabetes, it may happen, it may not. But, you can be tested, a simple blood draw.

    What kind of emotions spike blood sugar levels? In a 2 year old-- just crying, being told no, tantrums, or more serious things like crying over a scraped knee or broken bone? Everyone reacts differently to blood sugars. My daughter gets weepy when low, grouchy when high. What you have to remember is that if they are having a fit, or crying, test blood sugars first before doling out discipline.

    Is 400 during the day/night terribly bad?
    Try not to think of a number as good or bad. Think more of cause and affect. 400 is a number that would make you go hmmm, no what happened to cause this? Did we miscalculate dosing? Does he need more insulin coverage for food? Is he getting sick?

    Are there diabetes specific teddy bears or toys for small children? Yes, Rufus from JDRF. Call your local chapter, they will send a bag of hope.
     
  7. Christopher

    Christopher Approved members

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    You are welcome.

    I actually got that book for Danielle when she was first dignosed even though she was much older than your grandson. I liked it.

    Just curious, will you be the main caregiver for your grandson or are you just trying to understand this disease for the times he visits with you?

    As far as figuring out carbs for Easter dinner and just dealing with a picky eater in general, there are many members here who had their child dx at age 2 and under and I think they can provide you with some good information. I am not sure if the Endo is having you pre-bolus for meals or not (giving insulin 10, 15, 20, 30 etc minutes prior to eating the actual meal). This is a great way to minimize the bg spike that many people see an hour or two after eating a meal. However, in small children such as your grandson, you may not know how much he is going to choose to eat or not eat at a given meal. So what some people do is give the insulin after the food is consumed. That way you know exactly how much he ate. Just a thought.

    One other thing, I am not sure it is that important right now and at his young age, to make him understand that he is different from his peers. In reality, most children have some type of issue they have to deal with. Some kids have poor eyesight and have to wear glasses. Other have allergies and can't eat certain foods. Others may have problems walking and need to use crutches or a wheelchair. His pancreas doesn't work and he needs to get insulin from outside his body. So is he really that different? If it were me I would just keep it really simple at his age. Good luck.
     
    Last edited: Apr 18, 2014
  8. Sarah Maddie's Mom

    Sarah Maddie's Mom Approved members

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    LOL, I got Maddie that book when she was 5, a few months after dx. We found it on the book shelf about a year ago and she said, " Oh, this book freaked me out! It was so weird!" :) To the OP, it might be a book you want to hold on to till your GS is older, it's ... bold, to say the least. :wink:
     
  9. Beach bum

    Beach bum Approved members

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    Don't know where you are located, but the Barton Center for Diabetes Education in No. Oxford, MA does a caregivers weekend once or twice a year.
     
  10. nebby3

    nebby3 Approved members

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    My dd was 19 months old when she was diagnosed. I think she adjusted really well. At that age I think they quickly don't remember a time without D. Our toddler years were so chaotic it's hard to say but I know recently when she had been stressed out she has gone suddenly high. Emotions definitely have an effect. It is normal to have off numbers give a while as they slowly work out the right doses but hopefully soon you will see fewer 400s.
     
  11. namegirl

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    My son was diagnosed at 20 months of age. His diagnosis was 3 years ago. He's never been in DKA and never been hospitalized. It could happen, of course, but there's no need to assume that your life will revolve around hospitalizations.

    Now, diabetes with a toddler is HARD. There's just no getting around that. They can't tell you how they feel, tantrums can affect blood sugar, as well as the usual activity fluctuations and food pickiness/difficulties. But you'll all survive. My son is, except for having diabetes, extremely healthy. One of the healthiest kids I know, really. My husband and I might be a bit worse for wear from lack of sleep (nighttime checks are a must) but it eventually becomes a normal part of your daily routine.

    We were fortunate to have an endo who put us on an insulin pump immediately after diagnosis. The pump allows for tiny doses of insulin that toddlers need and that are difficult to eyeball with a syringe.

    My son adjusted to his diagnosis just fine and simply doesn't know that life was ever any different for him. He's almost 5 and can check his own blood sugar, tell us when his pump beeps, and is just starting to make guesses (correctly) as to whether he is high or low. As you said, children are resilient. You'll likely be very impressed by how adaptable your grandson is!
     
  12. Sarah Maddie's Mom

    Sarah Maddie's Mom Approved members

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    This^^^:smile:

    Mine was older, four at dx, but healthy as can be and at 16 she's not been near a hospital since dx. No reason to assume that any further incidence of DKA are in his, or your, future.

    Yes, it is really hard work, but eventually it becomes under the radar hard work. And it gets, to a certain extent, far less hard with practice.
     

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