- advertisement -

Mother of 22 month old, post-DKA type 1 diagnosis

Discussion in 'Parents of Children with Type 1' started by AuraCross, May 26, 2016.

  1. AuraCross

    AuraCross New Member

    Joined:
    May 26, 2016
    Messages:
    1
    My son is 22 months old, with a developmental/speech delay, and has just been diagnosed as Type 1. He was in DKA, and I knew something wasn’t right, because he looked sicker than I’ve ever seen. But he can’t talk, so he couldn’t tell me what was wrong. I didn’t recognize polyuria for what it was, I spent over 24 hours thinking he was still hydrated because of all the output. When he couldn’t stay asleep because of how restless he was, we took him to the ER, where we waited a few hours for fluids and they were floored when they got his labs back. He was life flighted to the nearest children’s hospital, glucose about 900.

    I am pretty frazzled right now. I have some really severe, awful, life-limiting and lethal diagnoses in my family that my son doesn’t have, so I’m not exactly shaken or afraid of the diabetes, just frustrated. My son can’t drink from a cup, he refuses to eat puree or solids, we have about five types of cracker that he will eat (which in no way or form add up to the 30g of carbs on his plan!! But when he’s had enough carbs and wants a snack, staying under 8g is impossible because he only eats carbs). So I’m trying to handle occupational therapy trying to force foods on him while also not freaking him out so bad he won’t eat after being dosed, and trying to get him to gain weight. He is the size of his seven month old brother, roughly, though my other children have always been in the 90s percentile-wise.

    The hospital discharged us after treating his DKA, knowing he caught a stomach virus in the hospital. He had been vomiting all day, to dry heaves. He drank less than eight ounces for an entire day and refused any formula at 6pm, at d/c, but they still dosed him with Humalog and sent us home. I had to force a mix of sugar and apple juice on my son through a syringe as his BG was in the 30s when we got there and still he wouldn’t drink. I thought I was going to have to give him glucagon the first night!!! I got no paperwork that mentioned any of his labs or stats on admittance or discharge and got kind of raked over the coals at the pedi office at the one week follow up for not knowing any of that.

    We test every 4 hours roughly, but our insurance only covers 100 strips a month and we’re already out, so I bought an adult use meter – we typically use the freestyle insulinx – because I can use generic strips we can afford… it’s awful because the timer is so short compared to the freestyle, and he fights me! And he’s 22 pounds so getting enough blood sometimes requires a couple of sticks for the one touch. His fingers are small, I can’t accurately tell where he will bleed from and sometimes wipe away the blood when trying to squeeze enough to be able to see it.

    Trying to get insurance to approve a pump. At first, we were looking at an Animas… ping? Maybe? Because of how little insulin he needed and what our insurance would cover. But because he now gets 3 units of lantus and 3 units of novolog, we are looking at an omnipod instead. My son immediately ripped the “trial” site out in the hospital, actually as they were installing it. I figure the compactness of the pod will help, hopefully he can kind of forget it’s there. If my son put his hands fingertip to fingertip, the animas pump was bigger. Imagine how well you’d adapt to wearing something bigger than the span of both your hands.

    If anyone can speak from experience with an infant or toddler, about any of these issues or any I may not see coming, I could really use the encouragement. I feel like I was really let down by Texas Children's. I expect to have to advocate for my son a lot. This got a bit longer than I intended, but this is all new and I’m in a place where I can speak and be understood. I am very glad to be here and receptive to anything the more experienced have to offer.
     
  2. rgcainmd

    rgcainmd Approved members

    Joined:
    Feb 6, 2014
    Messages:
    1,371
    My daughter was 11 when she was diagnosed, so I have no toddler T1D advice for you. But I just wanted to welcome you to the club that no one wants to join, and let you know that you and your son are in my thoughts.
     
  3. jenm999

    jenm999 Approved members

    Joined:
    Apr 30, 2014
    Messages:
    855
    Oh my. You are very welcome here. I don't have a toddler either, but wanted to acknowledge your post as well. You have been to hell and back the last few days (weeks?) but you sound incredibly intelligent and resilient and that will serve you and your son well. I hope others have more specific advice for you. I believe some toddlers are dosed after they eat, or for only half up front, for instance. Wishing you well.
     
  4. Snowflake

    Snowflake Approved members

    Joined:
    Dec 1, 2013
    Messages:
    482
    My daughter was diagnosed at 26 months, although she wasn't in DKA. It sounds like you were and are continuing to be let down by your care team. You deserve much better support than you are receiving.

    As to strips specifically, if your endo will issue a letter of medical necessity to seek a quantity override, you should be able to get coverage for 250 or 300 strips/month. Testing 3 to 4 times a day is not adequate for most T1 children, and certainly not a toddler!

    If you're having trouble hitting the carb count and don't want to dose after meals, one option might be diluted insulin? We considered that with our daughter's endo, but ultimately got on the pump, which made it less of an issue.

    I'm glad that you found this group, and hope that you'll continue asking questions here. I also want to mention that when my dd was a toddler, I found great support in a Facebook group called Diapers & Diabetes, where you will find other parents with very young T1s who have insight about managing T1 at that age. Hugs and best wishes!!
     
  5. samson

    samson Approved members

    Joined:
    May 11, 2016
    Messages:
    119
    I'm so sorry AuraCross! It sounds like you had a really crummy hospital experience and that you have a bunch of difficulties you're facing on top of the T1D diagnosis.

    It IS really tough with a little one. Our son was diagnosed at 23 months and it has been rough.

    I can't speak to the feeding issues -- ours is a pretty hungry monkey who will happily gobble up raisins, honey, watermelon, glucose tabs, or any other fast-acting carb snack we throw at him, and then cry for more.

    We have figured out that putting honey in a syringe works well for when he is asleep, if that helps. I've also heard that micro injections of glucagon can help when kids can't keep food down -- but that seems to be more of a last resort, rather than something you're relying on heavily. And if he isn't eating enough then he won't have glycogen stores in his liver to release, so it's not 100 percent foolproof.

    My only recommendations would be to get him on a Dexcom as soon as possible because honestly with those you don't have to do multiple finger sticks a day -- just the two calibration ones and potentially a few to catch lows. I find it very accurate 99 percent of the time and it's only bad when he's dropping so quickly that it can't catch up to the changes. It's another thing on his body but it can be attached very securely and it has really helped us improve his BG management.

    I'd also say to not worry so much about the total number of carbs your son is getting; just focus on him staying in range as much as is feasible and make sure he's eating enough generally to grow. Our dietitian told us our son had to eat 150 grams of carbs a day. But he NEVER ate that many, and the challenge of getting that many in him was awful, his BG control was awful, and I just found it too stressful to micromanage his food intake on top of all the other stuff. So now we just give him fewer carbs a day (typically 70 to 90) and he gets all his calories in, and his blood sugar levels are getting better. Basically, figure out which foods work for you and stick to them, slowly expanding your repertoire.

    Also, the dosing will probably fluctuate up and down during the next few months, so your son may improve enough to no longer need the 3 units of lantus every day. If that's the case, with the ping you can always do small blocks of insulin at 0.025 and then at 0 so that his basal rate is set appropriately.

    It has gotten a little easier in the last few months, but it does seem to be a long road ahead. You guys are in my thoughts and prayers.
     
  6. samson

    samson Approved members

    Joined:
    May 11, 2016
    Messages:
    119
    We also dose upfront only for foods we KNOW he will eat, or only for half up front -- the few times I got too ambitious and dosed upfront for everything, and then he wasn't hungry, things got very stressful very quick. Many meals we dose after completely, especially if it's a time of day when he has better control. If he's honeymooning it can often work okay.
     
  7. Snowflake

    Snowflake Approved members

    Joined:
    Dec 1, 2013
    Messages:
    482
    I'd like to second and third Samson's recommendation to look into a Dexcom CGM. It's been said many times on these CWD forums that endos really should be discussing these with patients immediately upon diagnosis.

    CGM is an invaluable tool for all T1s, but especially for pre-verbal toddlers. It allows you to watch your child's numbers in real-time, to head off lows before they happen, and to evaluate trends for making changes in dosing. Most U.S. insurers will cover CGM these days.
     
  8. susanlindstrom16

    susanlindstrom16 Approved members

    Joined:
    Nov 29, 2012
    Messages:
    371
    So sorry you are dealing with all this! You have definitely come to the right place for support. I cannot believe that he was discharged with a stomach bug after just coming out of DKA!
     
  9. BrendaK

    BrendaK Neonatal Diabetes Registry

    Joined:
    Oct 29, 2005
    Messages:
    3,835
    You've gotten some great advice here. And I'm sorry for your sons diagnosis. Mine was diagnosed as a 9 month old and will be 16 years old this summer. You will learn a lot very quickly. Like how to fight insurance companies for more than 100 test strips a month (you should easily win that case) and you will also learn that doctors and hospitals know very little about young children with diabetes. You have to go with your gut and be your sons advocate. Doctors can be wrong.

    When my son was very young we were told not to give insulin until he was finished eating. It's not ideal but it's better than force feeding him carbs to match the dose. We did that for a couple of years. You really don't want to set yourself up for a lifetime of food fights.

    Definitely seek out the Dexcom. I wish we had it when my son was that age!

    Last advice: when things calm down, don't be afraid to teach others how to care for your son. Find and accept help. It's too big of a burden to shoulder on your own, every hour every day.
     
  10. mmgirls

    mmgirls Approved members

    Joined:
    Nov 28, 2008
    Messages:
    6,030
    OK so my oldest was DX at 13 months and 16lbs. I am not sure of her weight at 18 monhs when she was able to get on pump, but very slim. My second daughter was DX at almost 5 years and only 35ish lbs like her sister at the same age.

    I would advocate for CGM, which for most is thru the Medical DME coverage and not pharmacy Rx. We did not get CGM until 4.5 years with my oldest, and it was life changing, truely. we started my youngest out on the CGM, it allowed us to see what was going on and be able to decide when insulin should start.
     
  11. Mimikins

    Mimikins Approved members

    Joined:
    Jun 22, 2014
    Messages:
    203
    Welcome to the club nobody wants to join (though once all the post-diagnosis craziness dies down you'll be surprised at how much stronger you become). Here's a big virtual hug! It's a challenge raising a special needs child (my 14/15-year old sister is on the autism spectrum) and a young T1, and I cannot simply imagine the challenges you are experiencing with both. Hang in there; we're here for you.

    Most insurances should give you additional test strips, especially if your endo writes a letter of medical necessity. Walmart also has a meter brand (ReliOn prime) that sells test strips at about $0.18 per strip, and they've been pretty accurate for me. Definitely consider getting a CGM (it is a game changer, especially when he is so little, probably really physically active, and uses little insulin). With the Omnipod, it might be a good idea to remember that if he rips out the pod, the insulin you primed into the pod may be wasted (I don't know if there's a way to draw the insulin back out to transfer into a new pod), while if he rips out an infusion set with a tubed pump all you need to do is insert a new set, connect it to the tubing attached to the pump, and prime the cannula.

    If you haven't already, these diabetes books are my best friends:
    - Understanding Diabetes: 13th edition (the Pink Panther book) - this is actually my textbook for the class I'm taking this summer, and it provides a great basic overview of diabetes management.
    - Think Like a Pancreas by Gary Scheiner - this is my diabetes bible, especially once I really started to fine-tune my insulin doses. It clearly identifies what may cause BG levels to rise and fall, how a pancreas normally works, and how you can adjust insulin doses based on certain BG patterns.
    - Using/Pumping Insulin by John Walsh - If you decide to get an insulin pump, this book really helps to show you what needs to be done and how to approach doing it so that you have the most flexibility with pump therapy (such as basal testing and adjusting your basal rates accordingly so that you would be able to skip breakfast and sleep in over the weekends without increasing your risks of hypoglycemia).
     
  12. quiltinmom

    quiltinmom Approved members

    Joined:
    Jun 24, 2010
    Messages:
    1,189

    As for reading books, don't feel like you need to read them all right now. It's a bit overwhelming and you need to focus on the day to day right now. But do read them when things have settled down.

    I also want to add that for sensory/size/age reasons, you can use a pump only for food boluses, then disconnect so he doesn't have to have it attached at all times (not applicable for omnipod). You will still need to use lantus, but I would consider this for such a young child with the circumstances you are under. It's an option your doctor may not know about.

    I don't want to throw too much at you all at once, but I definitely want you to know that I'm sorry you are not getting better support from your doctors, and to let you know that you will get through this. We are here for you, to answer every question, big or small. It is hard but it gets easier.

    Hope this helps!
     
  13. Megnyc

    Megnyc Approved members

    Joined:
    Nov 8, 2012
    Messages:
    1,373
    Sorry about the diagnosis. I don't have any experience with toddlers with diabetes but one thing to remember is that you can't set a zero basal rate on the omnipod and the minimum basal increment is .05. Personally, with a kid on only 3 units of lantus (which could decrease still), I would never want to be constrained by the basal rates on the omnipod. The ping will go as low as .025 which gives you more room for adjustment. Once he uses more insulin a few years it is easy to purchase the PDM out of pocket (usually they have deals for around $200) and then just have insurance cover the pods.
     
  14. njswede

    njswede Approved members

    Joined:
    Feb 9, 2015
    Messages:
    385
    Welcome to the site and our crappy club!

    Another +1 on the Ping. It's got the smallest increments on the market, which will come in handy as your son will most likely enter "honeymoon" once his pancreas gets a chance to recover a bit after the DKA. Another great feature is the remote, especially when combined with a CGM.

    Good luck and hang in there. It sucks, but life eventually returns to some kind of normalcy. The silver lining is that once your son gets his glucose under control, you're going to end up with a healthier kid. Your son has probably suffered from the effects of high glucose for a while before he went into full DKA. Our son appeared to become stronger and his cognitive abilities improved drastically once we got him on insulin. I will never know if that was the direct cause, but I choose to believe that there's a strong possibility it was.
     
  15. nebby3

    nebby3 Approved members

    Joined:
    Jun 5, 2007
    Messages:
    923
    My dd was 19 months old and in DKA at dx. She was the only one of my 4 without a speech delay but at that age she couldn't tell us how she was feeling anyway. Toddlers are tough. There is so much going on with them-- growth hormones are crazy at that age just like in puberty but they can't explain how they are feeling, have erratic schedules and are completely uncooperative. Actually a lot like the teen years ;) Needing very small doses because of their body size complicates it even more. We were very grateful for the pump when my dd was little (though she refuses to use one now). If we had had a cgm back then I know it would have been a life saver. It is tough early on cause there is so much to learn and you need to start being your child's advocate even though you don't know much. Don't be afraid to shop around and find a dr or clinic that works for you. Don't always accept what they say, especially when they say you can't have a pump or cgm. Do insist that you need more test strips. It sounds like you are on a set meal plan -- like give x units and he can eat 30g of carbs? You need to be vocal that that isn't working for you. There is no reason they can't give you a scale that says if he eats x, then give him x u of insulin so that you can match the insulin to the child and not the child to the insulin. My experience is that they start you off with what they think is the simplest system to understand. Basically they assume every parent is a traumatized idiot. If you show them that you are involved and care, a good dr (or hopefully even a half way decent one) will work with you to get a more flexible, workable system for you. We did use diluted short acting insulin when my dd was little. It definitely helped though I would think a pump would be preferable if you can get one and get your child to wear it.
     
  16. Mish

    Mish Approved members

    Joined:
    Aug 20, 2009
    Messages:
    1,393
    I can't speak to the toddler issue, but when my son was dx just after his 5th birthday, he had the most limited diet in the universe. It was horrible. Terrible. Absolutely a total nightmare. The dietitian did work with us to help set his insulin doses to the food he actually ate. She didn't have any mistaken notion that I was going to get him to eat normal, healthy food. She understood that he had all these sensory issues and worked with us. Try to find that for yourself.

    And the pump made life so much easier for him and us. There was no longer fighting about food. It at least put us back to our own "normal" and let him eat the way he ate.

    (FWIW, he's 16 now and eats anything you put in front of him, no food issues anymore. Sushi. The kid eats sushi when he lived on nothing but peanut butter sandwiches and didn't touch 'people food' until he was well over 3..)
     

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