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2 year old diagnosed with Type 1

Discussion in 'Parents of Children with Type 1' started by Myrasalman, Jul 18, 2017.

  1. Myrasalman

    Myrasalman New Member

    Joined:
    Jul 18, 2017
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    I am a mother of 2 year old son who was diagnosed yesterday and we are still in the hospital going thru the classes. Right now my husband and I are very scared. Is their anyone in the forum that can give us some feedback how the first few weeks were at home with a toddler? Also, is the toddler doing okay as far as lifestyle at home? I guess i am loking for some reassurance :(
     
  2. Christopher

    Christopher Approved members

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    Hello and sorry you have to be here. My daughter was not diagnosed as a toddler but I know there are a lot of parents on here who were and I am sure they will chime in. I will just make some general statements.

    The early days are very tough but we have all been there and have gotten through it. The other positive thing is that there are a lot of great resources and technology out there to help you manage this illness. For example an insulin pump that allows you to give him insulin without a shot every time. There are also Continuous Glucose Monitors (CGM) that allow you to see what his blood glucose is in real time and reduces the number of finger sticks to a few per day. You can even get this information on your phone so you can see it live when you are not even with him (when he is at daycare for example).

    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.

    I personally would not try and make any huge lifestyle changes right now. Focus on determining how many carbs are in the food he is eating and matching up the right amount of insulin to "cover" those carbs, invest in a good food scale to weigh the portions which can help determine carbs, and keep an eye on when he is particularly active, as that activity can lower his bg. I personally believe that it is important to check bg every night, several times a night. But that is a very personal decision and you will find people on here with a wide range of beliefs on that topic.

    Even though she was not a toddler when she was diagnosed, 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 is getting ready to go off to college next month. (Wait, next month??? How did this happen?!?!?!?!) :confused:

    My point is that your son will be fine and should have a full and happy life.

    Hang in there.....


    Here is the link to the post:

    https://forums.childrenwithdiabetes....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: Jul 18, 2017
  3. samson

    samson Approved members

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    Hi Myrasalman,
    So sorry you have to have this diagnosis, but know that things do get EASIER and that our little ones have a very bright future ahead of them. IT is natural to be scared but you do get out of the first phase of constant fear and overhwelmed thinking to what feels pretty normal most of the time.

    Our son was diagnosed just before age 2. It is certainly challenging in the first few weeks when you come home, but I think that's the case whether the child is young or old, honestly.

    We didn't find it too hard to do the finger pricks, though we had to resort to showing short videos for each shot to prevent him screaming and thrashing. And our son was very shell-shocked in those first few weeks -- he seemed almost depressed. Within a few months he bounced back to his usual ebullient self.

    Other accommodations to his age were that we bolused him for his meals after he had eaten them, not before, using diluted insulin (1 unit insulin for 10 units diluent), and we worked to get him on a pump and continuous glucose monitor (CGM) quickly because he snacks a lot more than older children and we didn't want to have to give him 10 shots a day, and the CGM allows us to see his blood sugar numbers because he couldn't tell us if he was feeling hypoglycemic. We also aimed to have more variety in "fast-acting carbs" because he would reject glucose tabs oafter a while, and arguing with a toddler when he's crashing is really scary.

    The first dramatic lows and stubborn highs are scary, but they happen, you survive, and you gain confidence and skill over time.

    Our son now does almost everything his older brother does, and while it's a lot more work for us to organize things, I don't think he feels limited by diabetes on a daily basis.
     
  4. samson

    samson Approved members

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    Some other tips:

    Keep a blood sugar log -- Just a written journal or book. We tracked the type of food, the blood sugar before a meal, the amount of carbs, the amount of insulin given for the meal, and the blood sugar 1,2, or 3 hours afterwards. This will help you develop routines for insulin dosing for certain common meals, and you'll know better how they affect your son's BG. While the insulin-to-carb ratio is generally a good guideline, most diabetics eventually learn that some foods just take more or less insulin, or different insulin timing, than you'd expect. If certain foods are very common, you want it to become second nature to give insulin for those foods. Less thinking about the routine insulin dosing means more brain cells available for tackling diabetes' curveballs.

    Take baby steps. While you do want your life routine to be as normal as possible, try to limit what you take on at first. For us, just counting carbs, monitoring lows and tracking insulin dosages took so much mental energy that leaving the house -- which now required carrying so much extra stuff -- became a huge endeavor. It's okay to limit outings in the beginning, to put off that family vacation for a month or two, and to say no to social engagements as long as you have a goal in mind for what your eventual normal will look like. Pace yourself. You'll get back to a family culture that feels comfortable and sustainable. If you feel freaked out and frantic, take a step back and try again in a week.

    Don't reinvent the wheel with food. We tried a bunch of low-carb recipes at first. They weren't tasty and not that great for blood sugar, and it just delayed how long it took before we felt comfortable dosing insulin for normal foods. Toddlers need carbs, so the sooner you deal with the fear of the spike or the low, the better. It will get easier. For us, pasta, cake and other "scary" foods are now the easiest and most straightforward to give insulin for. Don't give up on foods -- vary the timing and dosing of insulin more than you think should be necessary. While some foods (maybe soda) may simply be not worth the trouble, we've found it's possible to cover almost every kind of food and have no- or minimal spikes. And at the same time, even "good foods" will spike blood sugars some of the time.

    Be straightforward about the necessary steps: Now it's time for the finger prick, now it's time for the shot, now it's time for the sensor change. Don't let emotions or fear affect how you attack these tasks, or your little one will pick up on that feeling. It's hard at the beginning, but try to keep emotions out of specific numbers. You will see numbers that are horrifying -- but they bounce back quickly and scaring toddlers or getting upset will only make them think they did something wrong. We don't ant them to feel guilt about something their bodies can't do, or when they get older they may avoid treating and monitoring their diabetes to avoid feeling negative emotions.

    Read "Sugar Surfing" by Stephen Ponder -- after reading books like Pumping Insulin or Think Like a Pancreas. Day-to-day insulin requires a lot of quick thinking, and this book gives guidelines for more advanced insulin use techniques. I would imagine they may not come in handy in the first few months, but eventually they will.

    Patience, persistence and good humor are your friends. The fact is that sometimes blood sugar variations don't make sense -- we are trying to mimic what the body does naturally, and sometimes we parents don't always know what's going on in our little ones' bodies. On the other hand, I found it discouraging when parents would just write off crazy spikes as "that's diabetes" as if there is no way to manage all the chaos. If you keep persistently analyzing the data (say, once a week), over time you recognize patterns and get better and better at anticipating and managing crazy blood sugar spikes. There will always be crazy days and even weeks but they get fewer and fewer. Our son spiked over 300 pretty much every day for the first few months. Now he spikes over 250 about once or twice a week, and only briefly. This is not because his diabetes is getting easier, but because we're just much better at pattern recognition.

    Be kind to yourself and to your partner. 100 years ago our children would be dead. We are very lucky. But we also have a really hard task and it is so much easier if you see your husband as your partner and cut yourself some slack for mistakes. Don't blame each other and always assume the other one loves your child as much as you and cares just as much as you about their health. Parenting is hard on the easiest days. Parenting a child with type 1 diabetes can really stretch you to your limit. It's so much easier if you're holding onto someone else and supporting them, rather than tearing each other down.
     
  5. Snowflake

    Snowflake Approved members

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    I am so sorry to hear this, but welcome. My now 7-yr-old daughter was diagnosed right after her 2d birthday.

    Type 1 in a toddler is tricky and complicated. Determining insulin needs was a huge challenge for us in the early weeks -- my daughter did not honeymoon but some kids do, so the doctors are pretty conservative in dosing for a newly diagnosed toddler. Also, it's hard to know how much and how quickly 2 year olds will eat, which adds additional complication. For example, if he's been feeling poorly or lost weight before diagnosis, you might find that his appetite unexpectedly comes back with a vengeance. Because of that trial and error, I would expect a lot of blood sugar variability - even more than normal for Type 1! -- over the next many weeks. It doesn't mean that you are doing anything wrong. It just takes time to figure out insulin needs.

    We put our daughter on a Dexcom CGM within a couple of months of diagnosis. I highly recommend it. It will give you peace of mind that you aren't missing major highs and lows, and it's also a good way for the parents to learn about how different foods, activities, etc affect blood sugar.

    As far as lifestyle, I think every toddler is different in how upsetting they find pokes, shots, etc. We had a lot of intense struggles for the first few weeks, but once that storm passed, she accepted her T1 care pretty easily. One thing that helped HUGELY in the weeks after diagnosis was cartoon-character bandaids. Basically, we promised a bandaid for every poke and shot, and she was much more accepting, just focused on that reward. You might think about what little treats like that you can offer your child to get through the transition period until T1 care becomes ho-hum and routine.

    If you are on Facebook, check out the group Diapers and Diabetes for parents of T1 babies and toddlers. The management challenges with very little children are pretty unique and it's a great community to get answers and support during that period.

    I wish you the best of luck! It's tough, but you can do this.
     
  6. hawkeyegirl

    hawkeyegirl Approved members

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    Ah, I'm so sorry to hear about your son's diagnosis. My son was diagnosed at age 3, almost 10 years ago now. It is so sad and hard at the beginning, but I promise you that it gets better. The first year is a huge learning curve. I agree with the advice to log everything - blood sugar, food eaten, number of carbs, activity, etc. It will help you see patterns and make adjustments on your own eventually.

    I will also recommend the Dexcom CGM. Talk to your endo about getting one as soon as you can. It is a game-changer, especially for little ones.

    Many hugs to you. I know it doesn't feel like anything will ever be okay again, but I promise you that it will.
     
  7. StacyMM

    StacyMM Approved members

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    Hello. My daughter was diagnosed at 2, and it's been 11 years now. In the beginning, we were just overwhelmed. Research helped, and I agree with the books listed above - I re-read Think Like a Pancreas every year and I've traveled to a conference just to hear the author talk.

    For us, the shots weren't the difficulty in the beginning - it was the pokes. We did forearm testing almost exclusively in the beginning and we let her pick out a character bandaid every time. Not that she even stuck them on the right place, but the act of picking out the bandaid kept her distracted. Once her arms filled up, we'd peel them off and start over. We also 'discovered' that one of her dolls had diabetes. She used a clicky pen to give her shots so we ended up with a doll with ink spots all over her face and arms. We gave her the Lantus shot while she was sleeping so she wouldn't even know about it. For us, the insulin pen wasn't a good fit so we switched to a vial and syringe, which meant we could use the inject-ease. Not only did it make shots easier, but it hides the needle, keeps it quick and actually made other people less nervous about doing shots.

    We did MDI for several years and it worked. She's currently pumping and using a CGM but that took years for us to get to. If I had known about the Dexcom when she was diagnosed, I would have wanted it immediately. I wish they gave it to all kids on day one - I think we would have been less worried if we had it.

    For me, it didn't get less overwhelming until I took over her care. Once I read the books, learned the system and realized that I could adjust settings on my own, I didn't feel confident. Once I started making changes, it was less scary.

    And, I know it's hard to picture a little one growing up with diabetes, but they do. Diabetes becomes part of who they are and they are amazingly adaptable and resilient. My daughter is a great kid and she's rocking it as a pancreas :)
     
  8. kim5798

    kim5798 Approved members

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    Hang in there. Mine was diagnosed at age 3 & she is doing well & will turn 19 in a couple weeks. Ask any questions, the folks on the forum are great & have lots of good info. If what you hear seems extreme, remember, not everyone deals with things in the same way.
     

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