So, my toddler has diabetes

Miscellaneous and Personal Stuff I Must Share
1

We’ve spent the week in hospital, either with Nathaniel hooked up to I.V.s or with nurses and doctors doing stuff about learning to manage his condition. He’s 22 months. We took him to Emergency at Sick Kids hospital on Tuesday. Today is our first full day at home. We’re still calling in for his doses, we’ll be back at the hospital weekly for the next month, and we’ll probably meet quarterly with them until he’s eighteen.

I feel like I’ve stepped into a new and more complicated and scary world. With a little one who is a complete cookie/cracker/breadaholic, and has no molars yet. He’s Type 1, so barring medical advances he’ll be insulin dependent for life.

Other parents or relatives of diabetic kids? Support, snacks for kids who can’t chew much, anecdotes, war stories?

We have another one due in March. I’m profoundly grateful that he developed diabetes now, and not in three months. We should be confirmed in a schedule well before the next “caught in an avalanche” feeling descends.

2

Oh, sweetie, I’m so sorry – what a hell of a thing to have to deal with, esp. with another one on the way.

The good news is that it’s really controllable, and it sounds like you caught it very early.

My very best to your entire family.

3

LiLi I’m sorry for the news but like you said it got caught early. Poor Nat though! :frowning:

I have a feeling you’ll get lots of useful advice here. I just know there are dopers who are dealing/have dealt with a toddler with diabetes. Plus the usual gang of experts on medical stuff, of course. Don’t you just marvel at the expertise you can find in this place!

4

If you haven’t yet, check out Children With Diabetes. It’s a good resource.

I can only imagine how difficult this will be to manage with an active toddler, but the good news is that these days he can expect to live a long and healthy life, thanks to the miracle of modern medicine. At some point you guys may want to look into an insulin pump, although that may be something more appropriate for older kids; not sure. (I had an insulin pump during two of my pregnancies and it was awesome. I’m type 2, though.)

5

:frowning: I’m sorry, but it isn’t as bad as it could be.

6

I’m so sorry, but glad it was caught early. I don’t have any advice to offer, just my best wishes to you and the family.

7

OMG! Li-li you must be exhausted. So that’s what all the thirsty was about. Good vibes headed out for you and the gnat! Does your OB know? Will they test the new baby?

Hugs!

8

I stepped into that new and more complicated and scary world a year ago. Almost EXACTLY a year ago - Nov 24, 2008.

I’m an adult (39 years old) so it’s different for me, but I have made diabetes my #1 hobby for the past year and have read a lot from both people who have had diabetes since they were very young and from parents from you.

My #1 advice: it’s not that bad. Let me repeat - it is NOT that bad.

Take a deep breath. Yes, you are going to have to learn a lot, and it’s scary, and you’ll have to make some changes. And that’s it. Really. Nathaniel’s gonna live a full, happy, healthy life. It’s entirely possible that he will go through his entire life with very few, if any, complications or medical issues because of his diabetes.

Not necessarily true. There’s a lot of research going on out there, and a cure really could happen any day. If they don’t find a cure, there’s a lot of treatments being studied - anything from “smart” insulin to artificial pancreases to insulin that can be taken in pill form. Diabetes today isn’t the disease it was 20 years ago because of modern Insulins and technologies like pumps; in another 10 or 20 years it’s just going to be better.

I’ve learned a lot in the past year, and have gone from being (what I thought) completely healthy to being completely Insulin dependent. I have a pump. My life has changed a bit. But it hasn’t changed that much, this is an entirely manageable disease.

The aforementioned Children with Diabetes forum is a good one. Diabetes Daily is not specifically focused at children but has a ton of great info & resources as well.

If there’s anything I can do - questions I can answer, info I can give, let me know. Like I said, it’s my hobby nowadays, and if I don’t know something off the top of my head I can send you to people who can.

9

I’ve had Type 1 diabetes for almost 3 decades, I was diagnosed when I was 3. It’s definitely not the end of the world, although I’ve given up on it being cured within my lifetime. Here’s wishing differently for your son.

Oh, and I was a middle child with 4 siblings, and somehow my parents managing to keep up on my diabetes and still avoid anyone wandering out in traffic – you’ll do fine, I’m sure. :slight_smile:

10

Holy crap, sweetie! How did you figure out something was wrong with the little guy?

Hugs for the tot, and hugs for you and the mister.

11

LiLi-

I’m so sorry. You must be so worried! You’ll do fine though, it’s a learning curve I’m sure, but your his parents. I know you will adapt and learn whatever you have to and keep taking wonderful care of him. You’re a great mom.

hugs to you and Gnat.

12

I know rationally it’s manageable, he’ll likely be fine, and we’re learning to cope already, but it’s all still overwhelming. Lord, I wish he had teeth and could chew some of the between-meals snacks!

I’m looking up making crackers and bread with almond and coconut flour. He’s a crackeraholic, and it will be easier if I’ve got some more-normal (for him) snack foods on hand.

A week ago last Monday, my mother and I both noticed that he was a bit more tired than usual. On Tuesday he got his H1N1 shot, and were warned by multiple people that it could make him tired and/or sick. He got increasingly tired and lethargic and spacey throughout the week, his liquid intake increased dramatically, and he started peeing all the time. Also he was starving.

I looked up increased fluid intake in toddlers, and noted that diabetes was one of the causes, but I didn’t know that Type 1 wasn’t genetic, and no-one in our families had it- filed under “possible but unlikely”.

Went away for the weekend to visit Mr. Lissar’s Mum- Nat didn’t want to walk, was fussy, wanted me all the time. Not good. Not my son. Resolved to go to our family doctor when we got back.

Called the Telehealth hotline on Monday evening, when we returned, and they said likely reaction to the vaccine, but take him in to his doctor. We went to one of the doctors at our clinic the next morning, who started out saying 'vaccine reaction", but kept listening, asked about wet diapers, and ordered a blood glucose test. He said it was likely diabetes if his glucose was high.

Too high for their glucose monitor. Gave us a note and told me to get him to Sick Kids hospital emergency immediately, and also told me that I was extremely smart for not assuming it was just a virus, and looking up excessive hydration. And for getting him to a doctor before he went into a coma

We got to Emergency, were admitted, got Nat hooked up with fluids and insulin, spent an unhappy night holding him while he cried from hunger (he , talked to thousands of diabetes specialists, started learning about injections and glucose levels and blood monitoring and diet.

It’s been an educational week.

13

I think there’s a Doper here whose daughter has type one…Juliana?

14

Yup! My 10 year old daughter has type 1. It’s a different world now, all scary and frightening and amazing at the same time. The first few months are the worst. But I promise you, the children do adapt and get the hang of it all.

She was officially diagnosed March 10, 2008. Unofficially, it was the Sunday night before (March 9). I was trying out a new meter, and convinced her to test. I nearly freaked out when it read 580. Hubby took her to the doctor the next day, and her BG was 530. Our doctor set her up with the endocrinologist, and they went straight to his office. Thankfully, she didn’t have any urine ketones, so we got to skip the emergency room part: but we were calling the endo that night for insulin doses.

I felt so guilty for the longest time, even though I knew there was nothing I could have done to prevent this. I still feel twinges of guilt over it all. But she is an amazing young lady. She got on an insulin pump, which dramatically changed her quality of life. I highly recommend one when your son gets old enough. She has educated so many people about diabetes, and is not afraid to talk about it at all.

Children with Diabetes is a good forum for information. I also recommend tudiabetes.org: there are lots of parents there who are going through the exact same thing. We’re all a huge community and have a great support system. There are also several books I can recommend, like Type 1 Diabetes for Dummies (very good, detailed and easy to understand information), Think Like a Pancreas (although you never will, you’ll just come really close) and Using Insulin, by John Walsh. He has a companion book called Pumping Insulin, which is fantastic if and when you ever get to that point.

When your baby is born, check out TrialNet. They do testing to see if blood relatives of a child with diabetes have a tendency to possibly develop diabetes in the future. Our son will be tested in January.

There is so much research going on that I truly believe there will be a cure. It’s not here yet, and probably will not be for a while, but I believe our children will see it. In the meantime, insulin therapy is the best it’s ever been, and I know people with type 1 who have had it for 40+ years and are doing fine. It’s scary, true. But it will become old hat and part of the daily routine after a while. PM me if you need to talk about anything. I’ll keep you all in my prayers.

15

Goodness! I have no diabetes advice, just sympathy and intense mom-of-a-toddler empathy. My daughter is such a huge bread and cracker lover - not to mention fruit - that if this were to happen to her I don’t know what she’d eat.

Some easy to chew toddler foods she loves that I don’t think are diabetes problematic (I don’t know anyone with full on diabetes, but my brother in law and husband are both prone to blood sugar problems, so I have a vague idea of what are bad foods. Double check anything I tell you obviously!):
string cheese - she’s been eating it since she was 12-13 months. Really easy to gum, especially if you break it up into thinner sticks and she loves carrying it around.
tofu - look for “firm” if you’re not familiar with it. Chop it into cubes and he should be able to pick them up easy. This is probably one of her favorite foods.
yogurt or pudding - I think I’ve seen sugar free of both. Good calcium and protein and you can mix other things it for texture.
baby yum-yums or similar crackers/snacks: these are toddler foods made from rice starch, sometimes they’re sweetened with honey, but generally they’re low sugar. Most grocery stores around here carry the Mum Mums and an Asian market would have other varieties. Gothlette loves the ones that look like Kix cereal, esp. in pumpkin flavor.

Thinking good thoughts for you and your little one (and the one on the way!) I’m sure it’ll be hard at first but you can do it!

16

I don’t have anything to offer but my thoughts and prayers to you and your family, Lissla.

17

On one hand it may be easier 'cause he’ll grow up eating correctly and won’t be so aware of what he’s giving up.

On the other hand diabetes can quickly get out of control if you don’t watch it, and kids aren’t going care if he can get his hands on it. It may take him a good while to figure out certain foods are just not worth it.

18

Sending out prayers for you and young Nat.
I went to high school and played football with a guy that had type 1 diabetes and he was a great athlete. There was no slowing him down.
Good luck Lissla.

19

In the interests of fighting ignorance… the whole emphasis on “diabetic food” and “you can’t eat XXX if you have diabetes” is pretty much a thing of the past. Don’t get me wrong - eating is trickier with Diabetes, but not because you have to limit yourself to certain foods. At least with Type 1 - some Type 2s can successfully manage Diabetes with a low carb diet, but that just plain doesn’t work with Type 1.

The trick is the carb counting so you can dose Insulin correctly. Though I did limit carbs for several months while me & the docs worked through the diagnosis and treatment plan, at this point, I eat pretty much what I did pre-diabetes. The dietary advice the docs gave me was that diabetics need to eat a healthy, balanced diet - just like non-diabetics. There was nothing said about “you can’t eat X because you’re a diabetic.”

I eat bread, cereal, donuts, sub sandwiches, pasta, cookies, etc. etc. There are times that I pass up certain food because I haven’t worked out the Insulin dosage yet, or I just don’t consider a food “bolus-worthy” - that is, the amount of insulin I’d have to take for it and the associated checking and all that afterwards just isn’t worth it to me - but in general, if I want food x, I eat it.

Probably the biggest change I’ve made is that I just eat less altogether. I have one cookie, not two. I eat smaller portions. I try to work out more. You know, all those things I wanted to do pre-diabetes, but never had the motivation to do.

What is important with diabetes is that you eat a balanced diet and get some exercise. Which is the same as if you don’t have diabetes. If you live on a diet of fast food & cookies, you’re going to be unhealthy, with or without diabetes.

20

Yes- Nat can have high-carbohydrate foods at the appropriate times. We’re just trying to deal with his constant desire for cookies. Pre-diagnosis, he was eating a lot of saltines, arrowroot cookies and graham crackers between meals. Juliana, do you know anything about baking with stevia or Splenda? I’d rather use stevia, and I’ll ask our dietician if it’s safe- I hate aspartmane and am a food snob, so learning about sugar-free alternatives is weird.