Toddlers with Diabetes

Type 1 and LADA Parents of Children with Type 1 Diabetes
1

Hi - I just thought it might be nice if those of us who have toddlers with diabetes could start a discussion about the challenges we face in managing their diabetes. Our son, William, was diagnosed April 12, 2007 with Diabetes 1, when he was just 15 months old. We’re almost three months into his treatment and I find myself with a million questions that are specific to toddlers. We are currently on MDI (4x a day - Lantus 1x a day and Humalog 3x a day). We’re in the process of making a decision to move to a pump, mainly because his doses are so small that injections make it very difficult to control his BG. If anyone wants to join in the discussion, I would be grateful.

Thanks!
Susan
Mom to Carter, 5 years old, and William, 18 months old (diagnosed April 2007)

2

Hi Susan,

My daughter, Olivia, was diagnosed 2/1/07 at 21 months. She too is on MDI (Levemir 1x daily, Humalog 3x daily). We are holding off on the pump for awhile, in part because our experiment with the I-Port did not go so well. It is tough because her doses are pretty small as well. She also eats like a toddler…very little one day, lots and lots the next…and that makes managing her BG tough.

Do you have anyone who is able to keep your son and make decisions about doses, give injections, etc? I find it challenging to not have a sitter or family member (besides my husband) who can watch my little girl. Our parents want to, but they aren’t there yet.

Thanks for starting this discussion.

Paige

3

Hi Paige -

So far, no one watches Will but me and my husband. We do have a babysitter (she’s a nanny that we use for “date nights”) but I haven’t called her yet to ask if she would like to be trained on taking care of him for us. I just don’t feel comfortable having anyone but us take care of him yet. I’m sure that day will come because, as you know, taking care of someone 24x7 get’s really exhausting.

My mom did come and help me right after Will was diagnosed. She felt comfortable giving the injections (she a retired nurse) but strangely, didn’t feel comfortable taking his BG. My best friend recently visited and she felt comfortable doing both (while I was at home with her) and wouldn’t you know, the one time me and my hubby went out, Will’s BG went up to almost 400!! We don’t know why. Of course, we rushed home only to be told by the endo to just sit tight and let it go down naturally.

The food thing has been the worst for me. Our endo at Stanford (we’re in the bay area) discourages us giving the insulin after the meal so the constant battle of the food is maddening. That’s really one of the reasons I want to go to a pump. I hate the fact that my five year old has to eat his snacks in the other room or before his brother wakes up from his nap so that Will doesn’t see the food and go crazy. Unfortunately can’t even have 5 grams of carbs for a snack if he’s above 100 because 5 grams will shoot him up 100 points!! He’s eating alot of cheese but it just sucks because he sees goldfish and cookies and wants them. I’m looking forward to the day that he’ll eat raw veggies. I’ve been giving them to him and so far, he has absolutely no interest in them.

I’m just learning all the little things about the disease that no one tells you. My new find is that hot weather makes you go low or high??? We went to our neighborhood BBQ for 4th of July and Will was running around, having a blast, he had just eaten and within an hour he went down to 55? The insulin dosage was right - I had him eat what he usually eats for lunch with no issues. Today, it was hot again and he went up 100 points in 45 minutes - hadn’t eaten a thing and his BG went up from 165 to 265. I ended up correcting him at dinner. Anyway, it was a learning experience.

Regarding sitters, if you are in the bay area, there are some kids with Diabetes 1 at the Stanford clinic who are advertising their babysitting - one that I have the flyer for is 14 years old - which is pretty young but could work as a mother’s helper while you are at home. I’m hoping that as we progress through this that we might find some older kids with D1 who might want to babysit.

Sorry to here about the I-Port. We’re considering the OmniPod for William. It’s very small and the infusion set is actually part of the pod - you just press a button and the needle goes in with the catheter and then comes out. I like that’s it’s small and that evenually (it’s in the approval stages with FDA) it will also have a CGM as part of it. I think that in litte kids, the CGM would be great. I test Will about 10 times a day. It’s horrible. He actually sticks his fingers out when I bring out the monitor. He’s very good about it.

Thanks for joining the discussion. I’m sorry to hear about Olivia. I’m not a particularly religious person but have been finding myself praying for a cure and also, strangely, for the researchers and that one of them will come up with something new and wonderful that will help our children and everyone who is touched by this disease.

4

My son is now 22 months old, diagnosed 2 months ago. He’s on nph and novolog. He was having issues with lantus. Sometimes the schedule is hard, but he was on this schedule before diagnosis, we had to live with my grandparents for awhile and their late daughter was t1 and they still stick to that schedule! So Tony was already on it, kinda weird.
What’s really hard is that he doesn’t talk much, so I can’t tell what’s wrong with him. I know he’s low when he just starts screaming.
The heat makes him go low too, I have to plan outdoor activities in the mornings and evenings when it has cooled down.

5

Hi Alison -

We take the Lantus once a day in the a.m. but it does sometimes wear off at night. We really had to play with the dosage for the first 8 weeks or so and now we’re on 3.5 units. It seems to also work better if you inject in the butt (we just found this out about 3 weeks ago and the overnight numbers are much better). We use Humalog at mealtimes and occassionally, I do give it to him after the meal, when I feel like he may not want to eat too much.

I know that Will is low only because he’ll come and sit on my lap. Normally, he’s not very cuddly so I know something is up when that starts happening. Will is getting more words and I am really looking forward to the day that he’ll say, “I don’t feel right” and then I’ll know what to do.

I think the first few months are the hardest. For me, it was the pain of knowing that he’ll always have this disease and there is a certain amount of loss that goes with it. Plus, there is so much to learn as the we are the main caregivers. One mother on my other support group said that you’ll become an expert in diabetes and man, do I feel that way. I think I have every book ever published on diabetes - I long for the day when I can get back to my personal fiction reading…

Susan

6

haha I don’t even know where my fiction books are anymore! Must be buried somewhere under all of those instructions for the meters, random scribbles of the carb counts of different food, and all the diabetes books!

7

Hi all,

My son, Griffin,3.5yo, was dx’d at 18 months old a little over 2 years ago. We did MDI for a year before going on the Omnipod. We’ve been omnipodding for a little over a year now and i love it. Having a pump does make people more comfortable with watching him for us. It’s still a struggle for the two of us to get away, though.

Suggestions for no carb/low carb foods:

lunch meat, vienna sausages, hot dogs
scrambled eggs (or Hard-boiled)
sugar free jello
string cheese
sugar free popsicles, SF fudgesicles

8

Hey Kirsten -

Glad to see you joining the discussion!! I call my Endo’s office today and asked to see if they could get approval for the Omnipod for Will. I’m really hoping we can get coverage and if so, then we’ll try it and if we like it, go with it.

Thanks for the suggestions on no carb/low carb foods.

I have a quick question for everyone - we’re having our first “sick” day since diagnosis in April. Will has the stomache flu or some such bug and has horrible diarehha (spelling??) He’s been either crazy high - 400 this a.m. or low - 72 at dinner. I can’t get him to drink the Pediasure (apple flavor 6 carbs for 8 oz bottle). Any words from you wise mom’s as to how to get him to drink this stuff. I’ve been feeding him rice cereal and applesauce or bananas all day. I gave him .5 unit (a little under) after dinner today - he was 192 when I tested him and then gave him the .5 unit. I’m praying he won’t be in the weeds when I go test him in 30 minutes. I have a feeling he’ll be low. Anyway, how do you deal with the erratic numbers?

Susan

9

Susan,

The food is tough. Olivia will eat constantly one day and very little the next. I know that the optimal situation is one where insulin is given prior to a meal, but we almost never do that because her appetite varies so much. I try to give her her injection as soon as she starts to slow down; by then, I can pretty much tell how many carbs she is going to have…though she will often want to eat again very soon. I try not to tell her that she can’t eat when she is hungry. To add to Kristen’s list below, we also give her almond slivers, sunflower seeds, bacon, hummous, celery, lots of peanut butter. But if she is really hungry and wants something with carbs, I would rather give it to her and correct.

I haven’t noticed that about the heat! I do know that summer has changed things up for us and our schedule…she’s more active, goes to bed later. Something is always changing, right?

10

You’re doing well to keep him eating and drinking. I wouldn’t stress too much about the pediasure. Our first stomach bug sent us to the ER because Griffin refused to take anything! It’s common to see lows from diarrhea for at least a few days after symptoms ease. It takes up to a week for bowel absorption to return to normal. :stuck_out_tongue: Call your endo for sick day instructions. When Griffin has a stomach bug I reduce his basal by quite a bit and let him eat and drink pretty much whatever he likes. If he goes hi, I just give him a correction.

Your son may be a little small physically for the pod. I felt like Griffin was really barely big enough to keep the pod flat on his little body at age 2.5.

GL!

11

Thank you for this discussion. It’s so helpful to hear from other parents with the same issues: no babysitters, no predictable eating habits. My daughter was just dx on 5/27/07, she’s now 23 months old. She’s on Lantus (morning and night totalling about 3 units) and novolog to cover meals. She never gets more than 4 units in a 24 hour period. So, we’re dealing with tiny amounts.

In theory, the Lantus/Novolg should give us greater freedom, so I don’t have to force her to eat snacks. I inject Novolog AFTER she eats when I can estimate the carbs she’s eaten. But we are no where near decent control. We’ve only been at this for a little more than a month but we’re still seeing huge daily swings. Just this weekend she had her lowest low yet at 40 and then rebounded up into the 400s. I felt like the worst Mother on the planet for giving her too much insulin (1 whole unit of N after lunch) and then too many skittles to make sure she was OK. Sigh. I think a pump would give us much better control but I really don’t know how Stella would handle it – she doesn’t want to wear bandaids.

12

Hi -

Sorry to hear about Stella. I know this sounds crazy because we’re also only 3 months into it but it does get better. My husband has told me a million times not to take the highs and lows personally, but, as you know, it’s easier to say that, than to live it.

Stella probably takes so little insulin because she’s still in the honeymoon period where her body is still making some insulin. All the doctors say how wonderful that is but if they had to regulate the insulin on a daily basis like all us mom’s, they would surely change their tune.

Our lowest, low was 32 so I feel you pain. I haven’t had to correct much in the highs, yesterday Will was 400 but I was at the dr (for myself) and forgot to bring insulin (I’ll never forget to do that again). I called the endo and she said to correct him but to stay at my appt and do it when I got home. Well, 45 minutes later, we got home and he was 269? So, I didn’t bother to correct him since I put him down for a nap and when he work up, he was 134! Good thing I did nothing or he surely would have fallen low. It’s weird but over time, you just start to figure out what to do on your own. Doesn’t make it any easier but at least you start to trust your instincts a little better.

How are you holding up? I know for me the first month was horrible. I cried all the time. I just had the hardest time wrapping my head around the illness, the constant shots (and me having to give them!!) and worst of all, knowing that I was responsible completely for someone elses physical well being.

I know it sounds trite but it does get better with time. Did you buy that book “Think Like a Pancreas” yet? It’s really good about explaining how to regulate insulin. I found it really helpful.

Susan

13

Hi Susan and everyone. My youngest son is 27 months old and was diagnosed at 16 months of age. He is on Lantus and Novolog and we should be pumping soon. I am immersed in John Walsh’s Pumping Insulin book until we go to our Endo appointment in August. The decision to put him on a pump was hard for me. It seemed like everyone was telling me how much better it was but I just wasn’t ready. I still wish some form of my dream pump was available until there is a cure.

14

Hi -

I’m also reading the Pumping Insulin book in advance of my appt in Sept with the endos at Stanford. They are pretty supportive regarding putting Will on a pump. From other mom’s I’ve talked to, they tell me that it’s a life changing event.

What state are you in? I’ve heard some people say that their drs. won’t even consider a pump unless you’ve been doing MDI for a year?

Susan

15

Stella,

Please don’t feel badly! It’s hard, especially in the beginning and when they are so little. There’s so much to factor in, including the honeymoon. Take care of yourself. I think that it’s really easy to wear ourselves out and then we are no good to anyone.

It will get easier.

Paige

16

I have a 2.5 year old with diabetes who was diagnosed at 23 months. I was really thankful that I have type 1 myself so I knew what was coming! that said, it’s a whole different ball game with a toddler. In the hospital, I insisted that he be put on a pump-- I’d highly recommend it! He was on it 3 weeks after diagnosis. There’s really no reason to wait (unless you don’t want it-- but really, it’s no more complicated than shots). Then about 4 months after diagnosis I bought him a dexcom continuous glucose monitor (which thankfully our insurance then paid for), and I feel like I just can’t live without it. My stress level has decreased dramatically. So he runs around with 2 devices on him all day and night, but he’s used to it, and I have been really able to even out his blood sugar numbers in ways I couldn’t imagine before. Or, if they aren’t flat, at least I can see what they are doing easily, and now have at least some idea of how to manage the insulin/eating. I’m not saying he’s in great control, but we have had fewer episodes of extreme highs and lows in any case (e.g., he used to go over 400 a lot more than he does now). I’ve started giving the insulin before he eats and that really helps. I use an extended bolus, so I can cancel it if he doesn’t eat what I predicted.

Sarah

17

Hi Sarah -

I’m very interested in the CGM. Do alarms go off if they fall low or get too high? For that alone, I would pay big bucks! Will has been sick all week and either he’s crazy high - in the 300-400 range or he’s low 65-50. I feel like I’m testing him 12 times a day and since he’s sick, I feel so bad to be doing it. I put him to bed last night at 196 and 3 hours later he was 60!! Normally, he goes up at night!

I like the idea of the extended bolus. I just got the paperwork from my drs. office to see if my insurance will cover the OmniPod. We’ll see what happens in the next few weeks.

Thanks for joining the discussion!

Susan

18

Hi,
Yes, you can set the alarms to go off at the level you want, low or high. There are some problems, like it’s not always accurate, but overall it has caught a lot of lows.

Another thing I learned from my endo is that often kids this age will go up as soon as they fall asleep and need a higher basal for that. I noticed that with my toddler certainly. That’s probably why he normally goes up at night. I don’t know why he’d go low! ugh.

Sarah

19

Wow, I have never heard that about toddlers going up as soon as they fall asleep. That seems to have started recently with my daughter and we have been having to give her injections at night. Today we increased her Levemir from 3 to 3.5 to see if that might help as she has fallen some by morning but is still higher than she had been before this started happening.

Paige

20

My daughter was just about 5 when dxd 2.5 years ago - not quite a toddler - but ask away. I am totally pro pump and would suggest calling the main pump companies to get info and have them come to your home and show you the pump. At first I did not like to idea of having a machine connected to my kid - but trust me - you get over it real quick. Once they give it a try, most people tend to stay with the pump.