Q&yourA: Coping with juvenile diabetes

First, a reminder from one of your fellow readers: Don't clean an immersion blender without unplugging it, unless you like the emergency room.

And now a question from Jen:

"My 4-year-old was peeing and drinking excessively for about 2 weeks and I knew that was a red flag for diabetes, although of course I was hoping it was something easy like a UTI. But either way I knew I had to get it checked out, and turns out it was Type 1 diabetes. Luckily we caught it before he got too sick, so that was good, but we had a stressful and hurried trip to the ER and he spent a few nights in the hospital. We've been back home for about a month, but now comes the dealing-with-this-for-the-rest-of-our-lives part. He has adjusted well to the routine of finger pricks and insulin shots (he won't get an insulin pump until he is older). But we're really having a hard time with the need to get him to eat enough carbs. We're colliding straight into the preschooler picky eating and control phase, and I wondered if any of your fabulous readers/commenters would like to share advice.

In general we try to follow the Ellyn Satter division of labor idea. (Although–as an aside–am I the only one who's starting to get really pissed at what a first world/middle-class-and-up philosophy this is? As I scrape a perfectly good serving of chicken fingers that won't reheat well into the trash, I think about all the people working hard to feed their families and barely making it, or all the people NOT making it, and I get upset. But that's a rant for another day.) But then I start freaking out when all he eats of his dinner is the protein and none of the carbs. We've had a number of scares where we check his sugar level at 10 PM and it's something like 54, 42, or 29. (100 is normal; anything under 70 we have to wake him up and make him drink juice, which he dislikes as much as you'd expect. So 29 freaked me right the hell out. That's about when some people start going into a coma.)

So, like, what do we do? Obviously he has clued in to the fact that if he doesn't eat dinner he might get a yummy bar of fruit leather (aka concentrated form of carbs). Do people have any tricks to share?"

This is tricky. I never thought about managing a preschooler with diabetes because the kid we know with juvenile diabetes is my older son's age and he knows how to manage it by now. Which I guess is light at the end of the tunnel, that this IS about the age and at a certain point it will become more routine.

But I have never had to manage anything as nuanced and high-stakes as this. Readers, please, step in. I know a lot of you have had to manage chronic conditions and issues with food that are far more involved than "he won't let himself starve."

Would you please help Jen out? And if your child is older, could you let her know when it gets easier?

I am feeling very lucky that I have extremely mundane non-issues with my kids and eating.


47 thoughts on “Q&yourA: Coping with juvenile diabetes”

  1. I can’t address this straight on, but for picky times with my 2.5 year old I let him pick some of dinner.Could you pick 2 or 3 good carb options with pictures on the container and let him help pick out dinner?
    Good luck, and great catch getting him to the doc before he got real sick.

  2. I don’t have any direct experience, but if you can’t get him to EAT the carbs, could you get him to DRINK the carbs? I’m thinking that there might be some type of smoothie combo out there (I’m thinking greek yogurt, bananas, berries, blended with ice) to keep his nutrients balanced and meet his needs, but at the same time make it feel like a real treat to him.I’m not sure how your son handles medicine, but my 3.5 year old daughter refuses it unless it has been mixed with “special, magic applesauce.” So, a special magic smoothie shake might be right up his alley.
    I would also consider making a printable chart for him. I’m thinking a graph with ranges. When he gets a blood sugar score within the right range he gets to put a star on the chart in the right spot. If the score is out of range he gets a frowny face sticker on the chart. Offer rewards for X stars or a streak of X stars in a row. Turn it into a game. When meal time rolls around show him the different food that you might be preparing and talk about how it will affect his blood sugar. “This is meat or protein. It is great for making you feel full, and it tastes really good, but it doesn’t help you get stars on your chart. This is a vegetable which help provides the things your body needs to score a star. This is bread, it is great for scoring stars.” etc…
    Anyway, those are the tricks that I would use on my daughter. Hopefully, others who have been there have some good ideas of what works.

  3. I’m sorry you’re going through this. It’s a tough burden to shoulder.You should be getting expert assistance on this issue from a pediatric nutritionist with a specialization in diabestes management. It sounds like you have a clear idea of the what, but not the behavioral and how – so I would approach one with exactly those questions in hand. They will have seen it all before.
    There are also good website/societies/support groups etc. Let me know if you want anything in that realm – it’s sometimes hard to cut through the cr*p that’s out there and get to the good stuff, though starting from a gov site like MedlinePlus can help.

  4. I just wanted to say I am so sorry this happened and yet, at the same time you are dealing with it so wonderfully. You sound really on top of it although I am sure it is an emotional hell. It has really put my own problems into perspective this morning.Like you, Ellyn Satter rubs me entirely the wrong way.
    As Enu pointed out, Medline is the prime resource (free) for researching medical issues. I also second the advice to find an expert on ped nutrition and behavior.
    I am sending you tons of healing thoughts and a virtual hug.

  5. Just to clarify – Medline (PubMed) is the top choice for finding the latest biomedical research, but can be difficult for the laymen to translate into an action plan; I was suggesting MedlinePlus http://www.nlm.nih.gov/medlineplus/ “Produced by the National Library of Medicine, it brings you information about diseases, conditions, and wellness issues in language you can understand. “

  6. Everyone has great advice! I’d take the kid to the store and ask him to help pick out some carb heavy foods. And can you get him invovled more in the food prep? I’ve heard that this helps – that if they help make things, they are invested and want to eat what they’ve created.And I’ve done the finger in the immersion blender thing. It took forever to heal!

  7. I only have garden variety picky eaters at my house….Having a variety of dips to choose from (bbq, honey mustard, ketchup, Tzatziki, ranch dressing, etc.) might help with vegetables.
    Also, to keep trying new and different things. My daughter who doesn’t eat vegetables at all, likes grapefruit (in half, with the sections traced with the serrated knife, sprinkled with a teaspoon of sugar). I think one of the reasons she likes it is because you can add sugar. Same with plain cheerios. But, it surprised the heck out of me, so while they were in season we were having it as our “vegetable” with dinner at least once a week.
    Also, maybe there is something you can add to the meal that would not be a traditional side dish for that time of day, like crunchy cereal without milk with his lunch. He may get a secret thrill about not “following the rules” and you would enjoy knowing that there was a certain amount of food in him.

  8. I read the “Family Feeding Dynamics” blog (based on the Satter approach). Maybe you can submit a question (the writer is an MD) for some advice.On the other hand, I totally understand where you’re coming from about the Satter approach. And in this case, I’m not sure the Satter approach is even appropriate. This is a question of health and safety, like car seat usage. I’m sure all of us want to be respectful of our kids individuality and have them grow up to be thoughtful, independent, happy people– but we force them into a car seat no matter how much they scream and hate it, right? There’s just no choice about some things. Same thing here– a little more control is just going to be a medical necessity (although there may still be room for limited decision making on his part). Maybe you just can’t fully use D.o.R. with a four year old who has to hit a certain number on their blood sugar. When your kid is old enough to manage it for themselves, you can hand over more control and responsibility. When he’s grown, he’ll probably appreciate that you kept him alive more than he’ll resent having been forced to finish his pasta.
    Good luck– my heart goes out to you and your family.

  9. Of course I would recommend a dietician. He/She may tell you something like they would rather you err on the side of high blood sugar for a while so as not to risk the coma. Or something. I’m not a doctor or a diabetic, I just read a blog once.But if you’re looking for some other ideas of carb-heavy foods, maybe I can help. We like apple sauce squeezers (from Trader Joe’s, Target, or amazon) in my house. They are apple (or veggie) sauce in squeezeable pouches that kids slurp. So fun! They come in carrot which I think is a high GI food.
    Sugar sweetened yogurt.
    Pizza is very good at raising blood sugar of a diabetic for up to 8 hours (usually that’s not a good thing).
    I was hypoglycemic while pregnant and the only thing I found that could get my blood sugar over 60 was funfetti cake (probably not a good long-term strategy and I don’t even like it), but it did show me that it was very difficult to get your blood sugar into a range that’s healthy and makes you feel good and energetic even when you’re a grown-up and can supposedly manage these things yourself by eating what you know you need to eat. It must be very hard for a kid.

  10. My niece was diagnosed as diabetic when she was 11 months old, so I’ve watched my sister deal with issues like this.1. Talk to your endocrinologist and his staff. They need to be your main resource (as wonderful as this community is). Often there are classes you can take and support groups you can join. Other parents of diabetic kids will have been through this, too.
    2. At the hospital (I’m an RN), we adjust the insulin dose based on the amount of carbs eaten. So if he doesn’t eat carbs for dinner, are you giving him less insulin? Does he need a smaller dose of Lantus (if he’s taking Lantus)?
    3. Are you tracking his numbers to bring back into the endocrinologist? When you first start out, there will be some adjustment of insulin doses. I assume you’re seeing him/her frequently?
    My niece is almost 10 now and got her insulin pump last year. She’s doing GREAT with it and manages her diabetes well, including her own finger pokes, programming her pump, and counting her carbs.

  11. I thought of some more:Whole wheat graham crackers (with or without peanut butter).
    Some kind of nut/soy butter and jelly for dinner on whole wheat bread.
    Whole wheat or multi-grain pasta with red sauce (carb-tastic).
    Meatloaf (this is so flexible, you can put whatever he needs to eat in it…oats, bread crumbs, tofu, ketchup, BBQ sauce, hidden veggie purees, eggs, shredded cheese, alphabet soup, V8, milk, so flexible).
    You can make (and I have done this) custom muffins to your specific food needs. Who doesn’t love a muffin? In our case it was high-protein muffins with TVP in them, but you could do a modified banana bread muffin (with or without a cream cheese frosting). I found a savory muffin with cottage cheese and sun dried tomatoes which was high-protein and medium carb.

  12. Hmm, I’m thinking maybe you should just find what he likes as a carb (even if it’s fruit leather) and let him have that with dinner for a while? If he’s eating his protein I would think juice or fruit leather with dinner wouldn’t be too bad a nutritional compromise for a while. Then in 3 or 6 or 12 months you could revisit and try to work back in the whole wheat pasta or mashed potatoes or whatever is going uneaten these days.(I also am annoyed by Ellyn Satter.)

  13. What are the foods he likes (knowing this can be even momentary)? Please list crackers, tortillas, breads, puddings, fruit, veggies cheeses, meats, fishes, canned and frozen foods, fast foods.What are the foods/textures/he doesn’t like? We’ll get creative with hiding, entertaining, visually fun food.
    Also, sliced, leftover chicken fingers make delicious, if fattening, cold sandwiches with apples and mayo.
    The more daring YOU and DADDY are with food, the more he’ll be willing. We used Green Eggs and Ham as a motivator for our daughter.
    Can’t wait to read his turn-ons/offs!

  14. This can’t be easy on any of you, so I’m sending out big hugs to you & yours.One idea you’ve probably already tried – is to ask your 4-year-old to help with some of the meal prep (that is, if it doesn’t create more work, mess, and headaches for all involved). There are some good days when our spirited little monster will eat anything he personally helps prepare – we notice how he loves being thanked for the meal. Doesn’t always work of course. 😉

  15. Where did my comment go? I wonder if I put in too many links and the computer thinks I am spam selling discount videos or sneakers. Anyway, I was going to suggest three books (from amazon) that are rated highly and a tip from the reviews of one of the books.The tip was sippy cups with a 4-ounce mark on them so you can measure juice quickly. Buy them premarked or mark your own.
    The three books are:
    The Pink Panther Book published by the Barbara Davis Center.
    Diabetes Care for Babies, Toddlers, and Preschoolers: A Reassuring Guide
    The Everything Parent’s Guide To Children With Juvenile Diabetes: Reassuring Advice for Managing Symptoms and Raising a Happy, Healthy Child (Everything: Parenting and Family)

  16. Hi there. My daughter was diagnosed with Type I diabetes when she was 19 months old. She is now in first grade and on the pump. We have also had scares, and to this day the last thing I do before I go to bed is check her sugars, and it is the first thing we do every day. We have seen 26! as the lowest, and we have had days where she is over 600. Testing frequently helps get her on track and her A1C has always been pretty good.On to you question. My daughter knows that food, and particularly sugar, affect her diabetes. We, under no circumstance, play games with this. She knows to ALWAYS ask an adult if she can eat something.
    In general, keeping her out of the carbs is the bigger issue. We use “raisens” as medicine. I always carry them with me. She can also eat them without fully waking up (of course, I wait until she has swallowed) so if she is running low late in the evening, I pop a few raisens into her mouth (as opposed to juice, which would require her to sit up).
    In general, though, to remain on point – she knows that if I tell her she absolutely has to eat something, that she does have to eat it. I don’t play around with this. She can be picky, and I try to offer choices, but if I have insulin that needs to be countered, she must eat something. Sometimes I’ll do it with a sweet after dinner, but she quickly caught on to this. So, now it is bread or mashed potatos something that she can’t claim to not like. I don’t let her win these battles, and it is important that you don’t either.

  17. I’m sure this is a huge challenge for your family. I have no medical help for you. On the parenting front, all I can say is “before rather than after.” This is what we did with taller.When taller was little he had a bit of low blood sugar, nothing too serious, but enough that it had to be addressed. When his blood sugar dropped, he would get mean and have no urge to eat. I knew he had to bring his blood sugar up, but he would refuse.
    We made a chart outlining the process, so I could point to it and he would know what the expectations were. He helped make it, of course.
    The rule was Mom will stand here and not talk to you until you drink the juice. Then we will move to the table and chat while you eat a bit of protein.
    I had to stick to my guns about it. I had to find the strength to be really firm and set the rules. Due to previous health issues with him, being firm was a a real challenge for me back then. This method really worked for us. I made it clear, we do this before we do ANYTHING else, including talking.
    Telling taller the “real world” reason for insisting that he eat now didn’t matter at all, it just gave him fuel to rebel. Better for him was to see that I was firm no matter what.
    Once he experienced this as the rule, no matter how much crying he did, things got much easier for us.
    You’re probably already doing this, but I thought I’d share since this line of thinking can help with other situations as well.

  18. One thing my son (3.5) really responds to, eating wise, is an explanation of WHY his body needs a certain food. He really resists eating protein and goes for carbs only, so we explain what his body does with the protein and why it is so important. I realize this probably wouldn’t work with most kids this age, but it really meshes well with my son’s personality.I get what you’re saying with the Satter approach, and I don’t think it is the answer for every kid. My sister’s son uses it as justification to eat pretty much nothing. It works pretty well for my kids, but I do add a bit of prompting. We don’t fight or bargain, but we’ll tell them they can’t get down unless they eat a few more bites, knowing they’ll be hungry in five minutes. I think the Satter approach is more for me than for the kids. It keeps me calm, knowing that food isn’t going to be a battle, because I won’t rise to the bait. I know that probably doesn’t make a whole lot of sense…

  19. Satter approach works REALLY well if your kid has power issues around eating. My kid and I have fought about food pretty much from the moment he started solids. Every time we’re with relatives (ESPECIALLY my in-laws) I need to tell people not to make any comments about his eating, and please do not encourage him to eat. Being completely neutral is the only thing that has worked. We’ve had a lot of success with the idea that he must come sit down at the table for two minutes, even if he doesn’t touch anything on his plate.But yes, the waste does drive me nuts. And he still doesn’t eat any fruits or vegetables other than broccoli.
    Some of the other tactics we’ve used are to prop up the computer at the table so he can watch Thomas videos on youtube–he has to take a certain amount of bites to get to the next video. Providing some motivation like this might help your son eat more carbs.
    Maybe if he won’t eat his dinner because he wants the fruit leather, you can take something else away–no TV after dinner, or maybe a special toy that he can only play with if he eats enough dinner. Maybe a sticker chart where he can earn rewards?
    Good luck.

  20. I have a non-carb eater too. He hasn’t been diagnosed with Type 1, though I’ve been fretting about him and wondering if it wouldn’t be wise to test him. In any case, he’s on the “quite small” side and I know that he would gain more weight if he ate carbs. Turns out that he’s allergic to gluten. And he basically doesn’t like any grains. Sometimes he’ll eat a handful of gluten free pretzels or something, but even french fries aren’t a favorite. Any chance he has celiac — this has some crossover with type 1, no? He might resist eating wheat prodcuts if they are upsetting his stomach. Kids sometimes “know” when they are allergic. Try just rice and potatoes?

  21. I totally hear you on the food wastage that comes with this age! It drives me nuts, too. I write big checks to the food bank to make me feel less guilty. I don’t really blame the Satter method, though, because I am pretty sure that (in my house at least), it would be the same regardless of the method. We just have a very picky eater who is at the age when picky eating peaks. Unless I want to feed her nothing but candy and cupcakes, there will be wastage. The question is- how long will this wastage go on, and what method is most likely to produce an adult with healthy eating habits?Anyway, back on topic… I have no first hand knowledge on type I diabetes, and you’ve already gotten all of the advice I’d give… but I wanted to send you support. And put my hand up as another adult who is prone to blood sugar dips that make her grumpy and unpleasant to be around… and can’t remember during one of those dips that the best thing to do would be to EAT. So I feel for you, and for your 4 year old! This is hard.
    We do something like what @Sharon outlined for the hard and fast rules in our house, and even for my extremely stubborn almost 4 year old, things DO get better pretty quickly. But it is so unpleasant for all involved in the interim that I reserve the method for really important things. I rationalize that this helps my daughter understand the importance- if I pulled out the “nuclear option” on all of our daily power struggles, maybe she wouldn’t respect it as much. But maybe I am also just being soft. I hate listening to her scream and cry.

  22. I’m so sorry your family is going through this–how scary and how hard with a kid so young.I really like the idea of a visual representation of his food needs/options, and an explanation about what he needs and why he needs it. Perhaps a sticker chart with the different food groups for the day or for each meal, and he gets to put a sticker in the spot for each one? He could still have some choices (i.e., broccoli or carrots; roll or crackers), but the basic rules wouldn’t change.
    I like that approach because I’ve found that getting my son to do things is a lot easier if we approach it in a positive manner, and make him part of the team that is trying to fix the problem (i.e, “you’re such a big boy and you can help us keep you healthy!”). Also, I don’t know if it helps with your son, but I found my son really responds better when I preface a statement with “the doctor said” or “the doctor needs you to…”
    Wishing you and your family the very best of luck.

  23. I have the complete and total opposite problem. I have a “failure to thrive” “malapsorption” toddler who is supposed to be eating copious amounts of protein and fat. Like we slop butter on everything that goes in his mouth. And all he wants to eat is fruit. Nothing but fruit, maybe some crackers. Put peanut butter on that cracker? It gets shunned.So I have no advice, but I really feel you pain. Really. If my kid doesn’t get twice the recommended number of calories for someone his age, he stops growing and becomes very ill. And… it just sucks.

  24. I don’t know anything about Type I diabetes or the diet required, but would a divided plate work (or something fun like a bento box). And then assign each section to a food group – you need to eat this much meat, this much vegetable, this much bread, etc. Kids this age like rules and routine. I would even take the plate to a doctor appointment and have a doctor, nurse, or dietician explain the rules. That takes you out of it, if it is a power struggle issue. Good luck dealing with this!

  25. My daughter was diagnosed at 20 months. So the first thing I want to tell you is that this first year after diagnosis is very hard, and then things become routine. They are always a hassle and there will always be some bad days, but it does get to the point where it is largely routine and moves to the back of your mind.I think having a non-carb eater could be a good thing eventually. But in the meantime: we didn’t give our daughter insulin until after she ate and then based the dose on the carbs. This was the way our Dr recommended for little kids and it worked. I think it is easier to correct later with insulin (even if it means another shot) then to panic about a scary low and have to force juice/carbs.
    It’s also how pumps work — or how we use her pump. I mean: pumps work based on carb counting — giving carbs based on the carbs eaten. And with little kids it’s OK to wait until after they eat and then give the pump bolus. So in a way, it made it easier for us to transistion to the pump because we were already carb counting and could just tell our daughter a pump meant no more daily injections.
    After you have figured out this immediate situation — start looking for diabetes related websites. There are many and they are hugely helpful. They have answered tons of my “how do I” questions ,but also offered tons of emotional support as we struggle with dealing with a chronic condition.
    Welcome to the club. I’m so sorry you had to join, but it is filled with the loveliest people!

  26. Also with Enu and others: hie thee to the pediatric nutritionist. My husband works in patient relations and considers the nutritionists at his hospital to be miracle workers. If there are none in your area, please ask Moxie how to find me, and I’ll connect you with his (he is volunteering this as I type).And, courage: the daughter of good friends was diagnosed at age 8 or 9, and was pretty ok with it until Halloween, when she freaked (because if you can’t eat the candy, WHAT is the POINT?!). Her mom promised a nickel for each piece of candy since she had a candy jar at her work to stock. And couldn’t have been prouder when her daughter turned around and put the nickels in her UNICEF box, saying, I hate that I can’t eat candy, but I’m so lucky compared to so many kids, I’m happy to help them. May you have the same success. (That great kid is in college, hale and hearty and happy.) Courage.

  27. There is a blog called Six Until Me written by Kerri Morone Sparling, which is excellent. She’s had Type 1 since age 6 and is a diabetes advocate professionally. She has blogged about what it’s like to grow up with this, getting a wedding gown with a pocket in it to hold her pump, and having a high-risk pregnancy and finally giving birth. Anyway, she has lots of links to other mothers who are raising kids with Type 1. I think there’s a lot of community to be found there.DD’s friend got Type 1 in kindergarten, and it’s normal to have to spend a few days in the hospital to get on track and start learning what needs to be done for monitoring and management. I think power struggles over food are super common in children, as food has typically been something that’s under their control. I think that most kids do learn to connect improper eating with not feeling well, getting extra monitoring, and maybe even extra stays in the hospital. I know that our Childrens’ Hospital has an excellent education program for parents, and hope you can get the support you need. I think there’s a lot of variance on when it gets easier; so much depends on a given child’s temperament and willingness to be compliant.

  28. i’m a type 1 diabetic, and I think the best advice given was to make sure to give you bolus (mealtime) insulin after your child has eaten. This way they can get an appropriate dose of insulin based on the actual carb consumption. NovoRapid has an onset time of 5 to 10 min – no big deal for me when I forget to bolus before I take it post meal and it seems to work for me. This will ensure (somewhat) that you are not chasing lows for the rest of the evening. My other advice is to be gentle about it – this is a serious chronic disease that requires alot of adjustment in ones life. The better you and your child understand it the better your control over blood sugar will be. Make sure to educate youselves as much as possible. Don’t use diabetes as an excuse to control eating habits, my guess is that it will lead to other issues. Remember your child can eat whatever, whenever, and wherever they want to – you just have to take the insulin for it. I weigh what I eat, I read labels, and most of all observe what my blood sugar is doing. I understand some of what you are going through – a big fear of mine is that my 2yr old will get it, but if she does it will be fine. As I said education is key! My uncle was type 1 and lived to 82. Tell him there is alot of support, and no limits to what he can do. Jay Cutler is a good example.

  29. I am also annoyed by Slatter. But then I’m annoyed by anyone who tells me I need a “system” for feeding/sleeping/parenting.And I thought you cleaned an immersion blender by running it in a bowl of soapy water.
    I have nothing of substance to add except I’m sure it will get better. You’ll figure it out (because you have to), and good luck.

  30. I have a severely food allergic kid. He is super picky and cannot eat dairy, eggs, peanuts, beef, or pork. At one point we were also off wheat. It was horrible. He would not eat at all and became so skinny he was in the -40th percentile for weight. It was so so scary.Slowly and surely we discovered what he liked. Took a ton of trial and error. I have to say I catered to his food preferences and still do. When he tries something new he gets huge praise because I know how scared he is of trying new foods. From the time he has been 18 months old we have openly discussed what his condition it and how to avoid getting sick.
    He is 5. Has not had any accidental exposures to allergic foods in 2 years and he is in the 30% for weight (80%th for height) but hey he is on the charts although he is tall and very thin. That is a victory.
    Good Luck. Educating him will make his independence come faster.

  31. I have a very allergic three year old daughter with severe eczema and know nothing much about diabetes. Much better replies here.I will chime in and say that the first year of the diagnosis and learning to live with a chronic condition and changed life is hard but it gets better. The dermatologist said that uncontrolled a chronic condition rules life, once under control it becomes routine and shrinks away. I found that true.
    We have a medicated routine for the eczema, which she’s always had and only rebelled against occasionally.
    The food side is harder. We avoid dairy/egg/peanut/chili pepper family and since the scary ambulance ride after yellow bell pepper we’ve not had any episodes of allergy or major eczema flares.
    I’m lucky in that she is thriving on the restricted diet and she’s off the chart for height. And she can eat meat.
    We do small gifts in exchange for sweets she is given( candy) stickers etc. She also never eats anything without asking us.She is very wary with food outside the home and that came quite naturally. Very young children do understand more than you think.
    We have meals at the table, four of them, but I am very flexible about what when. So if she wants cereal for lunch or steak for breakfast that’s okay.
    I also have three or four versions of protein, whole grain, vegetable and fruit and bread/starch she will normally eat to fall back on. Because foods go in and out of favour for months.
    They’re not all nutritional stars but like @Mtber said to well it’s easy try and install food control with a special diet. I do bake vegan cupcakes from time to time and make sure we have a safe substitute for Pancake day and the holiday bakes that I make.It’s finding what works for your child.
    I spent a lot to get kosher dark chocolate coins as DD got upset not getting any during the holidays. And if there’s nothing she can eat at a restaurant than potato chips and jello she can have that and the good stuff later.
    Keeping a sense of normality is important as food easily causes great anxiety for children with medical issues. My daughter used to go splat with her wooden toy peppers for ages after the hospital drama and she is anxious about food.

  32. Jen, you are getting such great advice here! I’ve got nothing to add, just want to say as one of you IRL (albeit long-distance) friends, I’m sorry you’re having to deal with this but glad you’re reaching out for help. You are a fantastic mom. Hugs, and miss you.

  33. OP Jen here. (I occasionally comment as Ginevra, FWIW, and always wanted to be “known” the way Cloud, Hush, AmyinMotown, etc are, and uh, I guess I’m getting my wish!) You all are so fantastic, not that I had any doubt you would be. THANK YOU for the suggestion to give the insulin after dinner. I have called the dr and left a message asking about this. It would relieve a ton of anxiety and dinnertime food issues–all of them, pretty much–if we could just make this switch. Interesting that the dr didn’t suggest it even when we complained several times about the difficulty of giving insulin before we know how much he’s going to eat. This is exactly why I asked you guys for help. Even if it turns out there’s some reason we can’t do that, at least I’ll know we tried, and that other people do it, and maybe someday we can too.We haven’t had a lot of luck with the food-prep-leads-to-better-eating idea. He does like to help me in the kitchen but it doesn’t translate to him eating stuff he otherwise wouldn’t. In general he is a great eater, but he is definitely in the stage where he no longer wants to eat stuff he used to love. And I just can’t be serving pasta 4 nights a week. Plus he would stop eating it much once he got bored. The smoothie idea is a great one, but we’ve actually been giving him smoothies for breakfast for about 2-3 years now and are kind of maxing out his interest in those, too. I love the idea of trying different dips, though. He’s never been into dipping but maybe he’ll start now, and I can look for high-carb dips.
    I think the sticker chart might help, too. We’d already started trying the “protein helps you build muscles, veggies give your body energy” type line (looking back I think he was losing interest in food as his body was dealing with the diabetes, or something), but he seemed like he was starting to fixate on protein and not want other foods, so even before all this I was thinking maybe I should back off before I gave him a complex. So we’ll see about that.
    In general, it is a super relief to find that we don’t really need to change anything about how he eats. We just have to pay attention. Even Halloween candy won’t be off-limits, since we have a one-piece-per-day rule. So that’s awesome. I was heartbroken picturing the end of our weekend waffles-and-syrup feasts, but we just have to measure the maple syrup and make sure he doesn’t get too much. So far, so good. I am waiting as long as possible (ideally, forever) before introducing artificially sweetened stuff.
    We are lucky enough to live just outside Boston, home of some of the world’s best children’s hospitals, so we will keep using those resources. The hospital nutritionist was less than helpful (suggesting 3-5 carb choices per meal, where choice=15 grams of carbs, HA HA! He is 4! 15 carbs worth of broccoli is a full cup HAHAHA!) Anyway. I will check in with the nutritionist at his pedi and see if he/she’s any better. Thanks for the info, Enu! (Hi! It’s me, from the Mawr! Class of ’96, we’ve met IRL several times.)
    As I wrote to Moxie, as much as this sucks, it does not suck as bad as some things. @Snickollet (hi to you too! I miss you!) knows about that. The (only?) advantage to seeing a friend my age die of pancreatic cancer is that for the rest of my life when something bad happens, I can think, “At least it’s not pancreatic cancer!” And my heart goes out to those of you with food-allergic kids. In my case I don’t need to worry about rogue peanuts sneaking into his food, so there’s that. Also, at the hospital they put us on the bone marrow transplant unit because my son was not infectious, and they have nicer rooms there. So that also helped put things into perspective, FOR SURE. Interestingly, I was chatting with a mom there whose son was 19 months or so, had been diagnosed with cancer at 8 months (!!!!!), and had just had a bone marrow transplant, and here I am feeling SOOO BAD for her because her BABY had FUCKING CANCER! and mine only has diabetes, and then it turns out she is feeling SOOO BAD for me because my son has an incurable life-threatening disease, and hers is, in theory, going to have a clean bill of health once he’s done recovering from the transplant. There’s a saying that if you put your troubles in a bag and you were taken to the room where they keep all the bags of everyone’s troubles, and they said, “Here, you can trade your bag for any of these,” you would end up walking out with your own original bag. And that certainly seems to be the case for me!
    Thanks again to all of you for your advice and good wishes. You ROCK.

  34. Just another type 1 diabetic saying carb counting and erring on the side of caution (giving less insulin and then correcting a slight high is much easier than giving more insulin and getting scary low and then rebounding with a big high later, etc etc.) is the way to go–and that the online diabetes community is awesome…and of course to say hey! here I am enjoying my healthy adult life as a type 1 diabetic even though my parents faced plenty of food issues when I was a kid! 😉 Your kid is lucky to have you on his side. best of luck!also, sorry if this was incoherent. diabetes aside, I’m not feeling particularly sane with my whole situation right now. But the diabetes, it’s great! =)

  35. Jen, my friend whose daughter has Type 1 looks at Diet Coke etc. not from an artificial sweetener is bad standpoint, but as hey, this is something you can have any time and we don’t have to count it. I think Katherine really likes that feeling of normality of being able to have a can of pop when other kids are having one, too. She said it was a YOOGE adjustment to counting carbs in food, but you do get the hang of eyeballing it. Her child was in daycare and the best thing for her was to send in frozen meals they could heat up because the counts were right on the package and she still got to have a hot lunch like everyone else. It was easier on the staff to have the package since they would give her a shot.

  36. Well done on your son adjusting to the finger pricks and insulin so well and so quickly. I had very mild gestational diabetes last time round and continued to hate the finger pricks throughout.I assumed that it was standard to give insulin after eating, because that’s what my work colleagues (both health professionals themselves) with type 1 both did.
    I feel your pain of unhelpful nutritionist, who hasn’t really got their head round your son’s age. Our issues are related to malabsorption and its impact on growth hormones, and it showed that the nutrionist didn’t have experience of this. She didn’t say it, obviously.
    Anyway, no helpful advice sorry, just wanted to say you’re doing really well, and especially considering how little time you’ve all had to get your heads round this and to sort out the right support for your family.

  37. @Jen – stinks that your nutritionist wasn’t helpful, but yeah, BTDT once, too. We did have a nutritionist who wasn’t bad – not great enough to recommend tho – but it was many years ago and way out in Framingham (I am not entirely sure where you are, unless you are the Jen with whom I travelled to the Strolling of the Heiffers with? So many Jens, so little time 😉 and my memory has taken a bad turn. Too much drugs.)There’s got to be a really kick-ass pediatric nutritionist in the Boston area that someone can recommend tho. Though you’ve gotten great tips and tricks here.
    Still having a truly wonderful specialist as a go-to person when problems arrive can be such a safety valve. Life got so much better for us in many ways when our daughter got set up with her pedi-GI, who was supercompetant, dedicated, reasonable – if something didn’t work/truly screwed things up for the child, she’d come up with a different solution. And no blame games.
    I hope you can wind up with a team who does the same for you and your son.

  38. Jen, my son doesn’t have diabetes, but he’s got the genes for it. He’s in the TEDDY study (The Environmental Determinants of Diabetes in the Young, http://teddy.epi.usf.edu/). They have a lot of good information about children and diabetes, and may be worth phoning up. If you plan to have more children, you may want to consider enrolling them in the study. I believe one of their locations is Boston, and the big benefit is continual screening and access to lots of up-to-date information, advocacy, and a network of professionals in the know.

  39. …and I just now noticed the study is closed. It would be worth contacting them regardless; they’ll be launching future studies, I’m sure.

  40. Try the pump as soon as you can. Keep trying. It doesnt get easier but you and your child will grow stronger, wiser, and appreciate eachother every single second of the day.

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