- advertisement -

New diagnosis and totally lost

Discussion in 'Parents of Children with Type 1' started by megk23, Feb 28, 2013.

  1. megk23

    megk23 Approved members

    Joined:
    Feb 28, 2013
    Messages:
    19
    My 4 yr old son was diagnosed with T1D last week, after what we thought was a stomach bug was actually DKA. I'm seriously at a loss over food here. 1) He's always been a BIG eater. 2) He's starving right now (high blood sugar, etc). Anyway - We've been told, Olliver (DS) can eat whatever, as long as it's in his carb count and we give him insulin to cover it. Last night for dinner he refused to eat the mashed potatoes (1/3 of his carb count, mind you) so DH gave him strawberries to sub in (which we can do, as long as it is covered with insulin)... today the NP I talked to told me that we shouldn't do that (which I kind of knew, but DH did it without thinking). So she told me tonight to give him more complex carbs, not the simple carbs like potatoes or bread.. we're having turkey burgers, so she told me to give him the burger (I assume she knew it would have a bun) yogurt and milk. That's it. This is the kid that eats a freaking TON. Last night he ate his burger, DD's burger sans bun (so no carbs), oranges, strawberries and salad. THEN she told me to give him more yogurt for a bed time snack.. What? (DH goofed and gave him cheese crackers - I wasn't here).

    Add that to the fact that his numbers are consistently high (we call the office every day and adjust insulin, but it doesn't seem to be working!) and he's spilling ketones (still, I assume, from the DKA).

    I just feel like I'm screwing everything up and I need some insight here. Should we be doing something different? Should he not be eating carbs in his meals? (His plan is 45g for lunch and breakfast, 60g for dinner and then 3 15g snacks between meals). Should he really not have potato or corn or fruit?

    I'm sorry if this is all over the place. I'm seriously at the end of my rope and confused :(
     
  2. MomofSweetOne

    MomofSweetOne Approved members

    Joined:
    Aug 28, 2011
    Messages:
    2,744
    What insulins is your son on? You shouldn't have to work with exact carbs amounts per meal, depending on which type of insulin.

    Endos start the kids by running high for the first couple of weeks. Often the pancreas starts producing more insulin about that time ("honeymoon"), and they're trying to ward off dangerous lows when it does. Believe me, it is better to error on the side of highs for now, but I do remember it being hard to see the numbers.

    The bedtime snack shouldn't have mattered. Again, what insulin your child is on determines the protocol, but my daughter started on Lantus/Humalog and we were told NOT to give snacks on a regular basis and to go with "free" ones of 15g or less of things like cucumbers if she wanted something. People here will help with lists of free snacks; my brain is fried right now. My daughter is pumping and in puberty with a ratio of 1:9, so nothing is free any more.

    The first few months are overwhelming. Utterly and emotionally. Keep coming here and we'll help you out.

    The things I would have liked to have known at diagnosis are:

    1) Think Like A Pancreas is the most awesome book for teaching parents how to manage insulin. It even travels (trips)with us most of the time.

    2) Nutrition Scales like Perfect Portions (Target, Bed, Bath & Beyond) are worth their weight in gold.

    3) Having a Continuous Glucose Monitor is a game changer, stress-reliever, quality of life enhancer, 24/7 guardian on duty while I sleep. I wish we'd come home from the hospital with one.
     
  3. nebby3

    nebby3 Approved members

    Joined:
    Jun 5, 2007
    Messages:
    923
    What kind of insulins is he on? It is normal for them to start people off on a stricter regime that is less felxible (ie having certain numbers of carbs per meal) but that should be a pretty short term state. If it is not working for you, you need to speak up and insist that they give you an insulin to carb ratio so you can give him insulin based on what he eats instead of giving him food based on his insulin.

    It sounds like your NP is pretty unsympathetic to the real world of dealing with D. If anything your son will be even hungrier than normal now because his body has probably been starving for a while. There is not reason not to eat bread and potatoes, as long as they are covered with insulin. Yes, he will have more stable numbers if he eats lower glycemic foods (ones where the sugar hits the blood stream more slowly) but a turkey burger on a bun adds protein to the carbs of the bun so that also slows it down. It actually sounds like a very healthy meal to me. Was she really upset you fed your son strawberries? That's crazy. In the real world, we also have to factor in not making our kids completely rebel against us. They are kids and the goal should be to keep them as much like other kids as possible while still managing their D.

    Where are you? Are there other places you could go in your area? If this NP is typical of the practice, I would seriously consider switching.
     
  4. Brenda

    Brenda Junior Member

    Joined:
    Oct 19, 2005
    Messages:
    683
    I would ask to meet with a dietitian. Hopefully, this person would be able to provide more real world food options. I agree with Roberta that the NP was not very sympathetic to your situation, while a dietitian may be. As for the cheese and crackers for snack, that should be fine. The NP suggested yogurt to ensure there was protein, which he got with the cheese. If you are seeing overnight drops in BG (you should be checking his blood sugar around 2 or 3 a.m.), you might want to give him higher fat ice cream or peanut butter for a bedtime snack.

    You did not indicate what insulin(s) you are giving your son. Are you giving a fast acting insulin? Is it before or after he eats? Are you checking his blood sugars two hours after meals to see if he is in range (i.e., are you giving enough insulin)?

    I also suggest you get the book Understanding Diabetes by Dr. Peter Chase. It is a very helpful resource for the newly diagnosed.
     
  5. nanhsot

    nanhsot Approved members

    Joined:
    Feb 20, 2010
    Messages:
    2,626
    Everyone else has asked the questions and given the advice I would have, but I wanted to just say hey, and tell you that it really will get better, I promise. It'll take a while to settle in, these first few weeks, even months are very tough. Pretty soon you'll find that you are handling things and that life has taken on it's normal rhythm again. There's a new noise to the rhythm, but it all sounds good again.

    Your child CAN eat whatever he wants, as much as he wants. There is no need to stick to preset carb counts, and there is nothing wrong with your substitutions. Sometimes I just want to scream at the way MDs set people up for difficulty at diagnosis.

    The starvation is very normal, his body is trying to make up for what it lost when not getting what it needed prediagnosis. Until you figure out the insulin regimen find lots of "free" foods he can eat, things like meats, cheese, celery, small amounts of nuts, olives, pickles, these things can all be eaten without counting. During these early days my son ate and ate and ate but didn't want shots all the time so these type foods were important for him to feel himself again.

    Please come back and give more information on what insulins you are on, and if you know your ratios. Set up a meeting with your dietician asap, so you can understand a bit more how things work.

    I recommend the book "Think Like a Pancreas", can't recall if anyone mentioned that yet. Good luck. Sorry you had to find us but glad you did.
     
  6. megk23

    megk23 Approved members

    Joined:
    Feb 28, 2013
    Messages:
    19
    Thank you all!

    We do have the Chase book (it was always referred to as the "Pink Panther book" in the hospital. It is handy, but I never finished reading it so I'll pick that back up. I also just ordered Think Like a Pancreas.

    DH and I were actually frustrated last night because what the NP said goes against what the doctors had told us in the hospital! She seemed.. not mad, but frustrated? that we had given him the 2 fruits - within his carb count! He's four, he won't listen to reason all the time! He's handled all this so well and been so brave that if my kid wants a cup of oranges, I'm giving him a cup of oranges (well, with the juice drained out and rinsed with water, but we've always done that).

    He's on Humalog (sliding scale, 1u for every 15carbs) and Lantis (4.5u) at night. We were told to do about a 45 carb Breakfast and lunch, then 60g for dinner. He could have a morning, afternoon and bedtime snack of 15g. Those were worked out between the doctor and nutritionist at the hospital. (The doc had over looked mid-day snacks, so when the nutritionist added them in, he agreed). DS is always high overnight. Heck, he's always high no matter when. He seems to have one good, in-range number and the rest of the day is sky high (anywhere from 200's - 543 yesterday before dinner).
     
  7. denise3099

    denise3099 Approved members

    Joined:
    Jul 31, 2009
    Messages:
    1,757
    Talk to your doc but if he is always high over night he needs more lantus. After that's adjusted you'll see if he's high after meals and give more novolog. You're just a week into this--give yourself a break.

    I think the np wants to skip simple carbs at first so she can have a better idea if spikes are just because of the sugar or because you actually need more insulin. Very soon you will start making these decisions yourself. YOu will see if he wakes up a lot higher than he went to sleep and add hald a unit at a time of lantus until the nights are good. Then you'll see if he is crazy high 2 hours after eating and adjust the ratios a little at a time until that's a decent number. Then you'll see when he's high and you correct, is he good 3-4 hours later or still high, and you'll adjust that ratio.

    And then he'll have a growth spurt and the whole plan will be shot to heck. :rolleyes:

    But the fact is that fruit or steak, if he's high all the time he needs more insulin.
     
  8. nanhsot

    nanhsot Approved members

    Joined:
    Feb 20, 2010
    Messages:
    2,626
    Work on your basal setting with your team, getting that nailed down (well, nailed into jello is more like it, it'll change!) is key. High all the time generally means you need more basal, and it's foundational.

    As far as meals, I agree with the PP that your team is just trying to get things figured out, but please realize that once you do that, you'll be able to feed him a much more normal meal, counting carbs eaten rather than try to limit or force feed preset amounts.

    You have a ratio (1:15 I believe), so if he eats more or less, it's fine to do the math and adjust. Your goal is 45 carbs at a meal but if for one meal he eats 60, that's just an extra unit of insulin. This is hard at first but gets easier over time. Everything gets easier over time.

    Try not to figure everything out at once, it's too overwhelming! Work on basal now, sticking to basic meal plans (but substitutions are fine, I find that advice ridiculous for a 4 year old!), then once you have that set you can begin to experiment with meals. With the type of insulin he is on you will be able to have him eat a more normal meal, counting carbs and calculating insulin. The guidelines they gave you are most likely just to get you started but over time it's rare to stick with them. We were never given set amounts, only the ratio.

    Over time you'll figure out things like how fat and protein factor in, how simple sugars work, how to deal with foods that cause quick sugar changes vs those that stick around a while. I think it's too soon to worry about all that and I find it odd for your NP to complicate things in such a way.

    Not to confuse you further, but it's not unusual to have different ratios for different times of day. Most kids need a little more insulin for their breakfast meal, for example. This early in the game work with your endo team to determine this, I'm just throwing it out there as a possibility for change.

    Good luck, you are not alone in this.

    p.s., if you go to "user CP" in the left hand corner, you can add information that is helpful in giving advice as a signature. Generally it helps to know age of child, diagnosis date, and insulin regimen.
     
    Last edited: Mar 1, 2013
  9. Yellow Tulip

    Yellow Tulip Approved members

    Joined:
    Jan 14, 2010
    Messages:
    659
    First of all, it will get easier! Promise! The first few months are tough, but you'll see that you'll get better at understanding this beast as the time goes on. Just make sure you're learning - coming here is probably the best you can do. It's been 3 and a half years since my son's diagnosis, and I can tell with certainty that 90% of what I know I learned from the parents here.

    We do not stick to any preset carb plan. My son eats what he would eat if he didn't have diabetes. The only exception to this is breakfast - if it were up to him, he'd eat an all-carb breakfast. That however, would send his blood sugar into the stratosphere, so I make sure I also include a little fat and protein. Greek yogurt (more protein), a breakfast sausage or scrambled eggs manage to keep the spike from happening (most of the time, at least :rolleyes:) I see no reason why, being on the insulin your son is on, you should follow any kind of a carb plan. There is nothing wrong with substitutions either, we do it all the time. The crazy hunger after diagnosis is completely normal - their bodies have been starving pre-diagnosis, so they're replacing the lost weight. My son, who is not a huge eater, ate 3 burgers for dinner during the 2 weeks or so post-diagnosis!

    It's totally normal to feel lost and frustrated and confused. Come here, you'll get the best advice and a place to vent with people who understand 100% what you're going through.
     
  10. Helenmomofsporty13yearold

    Helenmomofsporty13yearold Approved members

    Joined:
    Oct 5, 2008
    Messages:
    702
    The reason they like you to stick to specific carb counts at the beginning is so they can figure out the right insulin dosages. The carb counts should have been based on what YOUR usually child eats at each meal. The other reason to stick to a specific number of carbs after diagnosis is that insulin needs usually drop off considerably when the honeymoon period kicks in, so more many more adjustments need to be made.

    High BG's usually do make the child feel hungry as the body thinks it is starving.

    I would call and ask to speak to the endo or the dietician. You should not have to make any of these decisions on your own yet.
     
  11. Christopher

    Christopher Approved members

    Joined:
    Nov 20, 2007
    Messages:
    6,771
    Just to clarify to the OP, not every child has a honeymoon period, many don't. The key is to test his blood glucose often and make decisions based on what his body is telling you. So right now, since he is high very often, you are being told to increase his insulin. It is also a good idea to keep a log of his carbs eaten, amount of insulin given, and bg number. It will give you a good idea if there are any patterns and how certain foods may affect him.

    Are you giving him insulin for those 15g snacks? If not, that may also be contributing to his consistently high bg numbers.

    Just take things slow, one day, one meal, one bg at a time. :cwds:
     
    Last edited: Mar 1, 2013
  12. Dvbo79

    Dvbo79 Approved members

    Joined:
    Feb 24, 2013
    Messages:
    39
    I've also been experiencing very similar things with my son, he's 2, diagnosed jan 2013. I don't have help to offer just feeling similar struggles. I can't figure out why he remains high even when doses are raised. I also don't get that they say give them any snack he wants in the carb range one time then another time we were told try not to give him a snack between meals unless he asks. Well he always asks. We don't cover snacks. And we dose before meals according to what his BG reading is before the meal. He's two and he doesn't have a wide range of food he likes - like most toddlers. They said he can eat whatever he wants and it's not really a diet but now the more I read it seems like people stay away from certain foods altogether. Very confusing....
     
  13. nebby3

    nebby3 Approved members

    Joined:
    Jun 5, 2007
    Messages:
    923
    My dd is among those that really didn't have a honeymoon. The only thing we heard about it was whenever there was an unexplained low the endo said "Oh, that's the honeymoon." Didn't seem like a good thing to me(though having since seen a friend's son honeymoon, I know mine never eraly did).

    Anyway, it sound slike your doc is okay but this particular NP is not. I would see if you can avoid her in the future though whne you call in you may have no choice of who you speak to.

    It is normal for kids to be high at first. They want to go slowly getting the doses right so they don't shoot them too low. They should have you call in regularly and be changing things every couple of days.

    I really think they give you set amount of carbs in the beginning to try and make it easier on you. I am not sure that ever helps. Next appt I would say "We'd really like to be able to give him an extra snack when other children are eating. How much insulin should we give him for that?" Make it very clear that this system is not working for you. The goal shoudl be to come up with something that gets the best bg control with the best lifestyle.
     
  14. stewkimmom

    stewkimmom Approved members

    Joined:
    Aug 17, 2012
    Messages:
    12
    Just want to give you a cyber hug.
     
  15. Helenmomofsporty13yearold

    Helenmomofsporty13yearold Approved members

    Joined:
    Oct 5, 2008
    Messages:
    702
    "A couple of weeks after the onset of your diabetes, your insulin doses will probably have been lowered considerably and they will go down even further in the weeks to come. " Type 1 Diabetes, Ragnar Hanas pg 157.

    The advice I gave the OP is exactly what I would have wanted to hear when DD was diagnosed and I was totally overwhelmed. I was no where near ready to make my own adjustments in a week, or even in a month!
     
  16. nanhsot

    nanhsot Approved members

    Joined:
    Feb 20, 2010
    Messages:
    2,626
    You might consider posting some of these questions in another thread. I don't personally believe uncovered snacks are a good idea (except for carb free ones of course)...uncovered snacks mean you are either feeding insulin or ending up with a high, neither of which are a great idea.

    Uncovered snacks may be your primary problem if you are not covering them, you might consider dosing for them or finding more low carb snacks to try (ham and cheese cubes, olives, celery with a tiny bit of PB, pepperoni, etc).
     
  17. mmgirls

    mmgirls Approved members

    Joined:
    Nov 28, 2008
    Messages:
    6,030
    You have allot going on ight now with a pretty younge guy, yet I am sure he knows how to push your buttons already!

    SO

    Keep with the thinking that he can eat as he ate before but carb counting needs
    to happen.

    I THINK what the NP was trying to convey was information to help him feel full and satisfied and not end up starving so soon after has eaten. Not so much about what he should or should not be eating now that he has Diabetes. But that is just a guess.

    things that will help keep him satified and and last longer between meals and will also help with slowing of the bg rise is fat and protiens. This is where I think the NP was trying to go with her suggestions. Plus fats and proteins do not add carbs to a meal.

    Your son's body is still trying to restore itself, prior to his DX he may have been eating but his body was starving. And this recovery wll take awhile

    Please do not make meals a fight of who is doing it right or wrong, kids nutrition is not a daily event but more of a weekly thing. One day your kiddo may only want fruits and no proteins/fats or startches. then the next day only the meat and cheeses. Then the next all carbs.

    feed him as he usually would but try to be mindfull that different choices will lead to different outcomes, BUT THAT, you can help your son and your family be happy and healthy while you learn about what the different choices will do_Once your son has recovered a bit it will be easier to handle his hunger and that starving feeling.

    As an important side note, ALLOT of children feel "hunger" when they are having a low blood sugar so it is important to not discount this feeling just because a child ate recently. Addintionally many children that are newly Dx'd and thier blood sugars start to getback to "normal" bgs may feel low at a number significantly higher numbers because thier body needs time to get used to knowing that its ok to be that low.
     
  18. Christopher

    Christopher Approved members

    Joined:
    Nov 20, 2007
    Messages:
    6,771
    This is almost certanly contributing to his bg being high.
     
  19. Christopher

    Christopher Approved members

    Joined:
    Nov 20, 2007
    Messages:
    6,771
    I am not sure what your point is. I was simply pointing out that not all children have a honeymoon period.
     
    Last edited: Mar 1, 2013
  20. mmgirls

    mmgirls Approved members

    Joined:
    Nov 28, 2008
    Messages:
    6,030
    Yep no honeymoon here, we hoped for it and waited for it, but it did not happen for us and we only increased insulin from DX.
     

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