I’m so glad that you started this discussion! I’m Lisa SAHM to Isabelle 3 1/2 with Type 1 and Alex 16 months. Isabelle was diagnosed in April of this year so we are just learning about all of this.
We have been having the week from Hell as far as blood glucose goes. She has been high for absolutely no reason most of the week. Today for instance she woke up at 6 am (uuuggghhh!) and was 291. An hour later when I finally made myself get up and give her breakfast she was 169. She is usually close to 100 in the mornings. This afternoon she was acting dramatic so I checked her and she was 266. I didn’t correct right then because we were going to have dinner in about an hour and a half. She came downstairs and fell asleep in a chair and an hour later was in the 400’s! Totally crazy.
I think the thing that I find the hardest, along with trying to find a sitter, is that I am completely responsible for her wellbeing. My husband tries to help on the weekends, but it usually ends up just making up frustrated with each other.
Welcome to the discussion!! We were diagnosed in April of this year as well. All I can say is it does seem to be getting easier. I find myself not freaking out as much as I did before.
We’re on vacation right now in Mexico (we’re going to be here 3 weeks) and we’re having the exact same problem. Crazy night highs 350+ and waking up low 60-70s. I called the endo today and my assumption to back down off the Lantus was correct but she basically said it’s all trial and error. Not exactly what I wanted to hear.
The other night he was 380 when I checked him 2 hours after dinner - I gave him 0.5 unit to correct (1 = 200) and he dropped 330 points in an hour!! Crazy!! Now, when he’s high at night I don’t correct him.
Just as an FYI- I gave Will some tylenol today and it shot his blood up to 475!!! Gave me a heart attack but then I realized that it has sugar in it and by lunchtime he was 260 (without correcting him) so I did the right thing in NOT doing a correction.
I agree with you about being responsible for their wellbeing. I don’t think anyone else (family, friends, etc.) quite get it unless you live it. I often get really freaked out and hard on myself when William’s numbers aren’t good. I feel like a failure but I’m starting to realize that there is just no way of predicting these outcomes correctly all the time.
I know what you mean about having your husband help. We do the same things and find ourselves frustrated and sometimes arguing about the right protocol. It’s such a drag. But I do find that putting Will’s health first, our arguing second does seem to help :+)
Don’t worry about venting - that’s exactly what this group is for.
Just wanted to add that since we’re vacationing down here in Mexico - a really great 0 carb snack are pork rinds!! Great for toddlers - they are crunchy and easy to carry around. Also, since toddlers need fat for development - it’s not as bad as a grownup eating them!
Thanks for the reply. I do think that it has been getting easier. This last week has just been more crazy then most. I think I am just enough of a control freak to let it really bother me when I can’t control it. I’m working on it.
Back from vacation. I learned a lot of things about going on vacation with a diabetic son. The most important is take at least double or triple the amount of supplies that you think you’ll need. The other is that our son’s levels went crazy when we were out of our routine. It would have been really helpful if someone would have told me about the highs that altitudes create. We were at 5000 feet and William was either very high or very low. Altitude has something to do with blood volume and how you absorb medications, etc… It took about two weeks to get his insulin right. We were in Mexico for a month so those first two weeks were incredibly stressful for me. I also learned that a month with your parents is too long!! :+)
HI Sarah!
My daughter was diagnosed at 8 months of age after a terrifying 24 hour illness and trip to the hospital! She is now 15 months old. My husband and I are doing a good job at managing her sugars and shots…and we just got through her first flu! Wow, that was a challenge! Anyhow, we are contemplating on a CGM and pump. Having diabetes yourself and a toddler on both pump and moniter…I am interested in your opinion on putting a 15 month old on one or both systems. She is also still breastfed which is good and bad…of course it’s hard to moniter the number of carbs…but it is a brilliant way to get her out of a low! Would you recommend pumping after she is off the breast or ‘why wait’? she is getting insulin injections now…and we are doing a pretty good job under the circumstances.
I think that manageing blood sugars in a toddler is like trying to juggle. I mean - how do you predict how much they’re going to eat or what? - how do you predict how active they’re going to be or not? And they come into contact with so many viruses, that throw everything the Dr taught us out the window.
A CBGM sounds like a fantastic idea. It would make sitters possible, it would mean we didn’t have to get up every 2 hours though the night for sugar tests, iut would mean dd could go into sunday school without us … But they’re currently unavailable to us. Although I will be mentioning it to the Dr next week - just in casde he knows of any tirals or anything.
Hi,
My daughter was dx at 8mos old. She is now 16mos. I can’t believe that she has now been diabetic for 1/2 her life already. Anhow, I do think we are doing a good job at managing her, that said it has been very eye opening the last week while she has been wearing the dexcom cgm. She was unphased by the insertion and carrying around the device on her waist! I love the thing!!! It is difficult with Cadence due to her age, the fact that she is a very picky eater and still prefers to breast feed over anything. So, trying to count carbs and predict when she is going to eat is difficult to say the least. We give Humalog before her ‘meals’ and try to predict what she’ll eat and when and what her activity level will be. With the cgm, it has been very cool to watch when the breast milk (questionable how much she takes in and how many carbs it is) gets into her system and how high it takes her bg and also to see when the Humalog starts acting. We have found that we can watch, make decisions on giving more or restricting carbs more easily. It has given me more piece of mind while out with Cadence on playdates etc. I don’t find myself as tense and following her all over to analyze her activity, intake and bg…and I can actually socialize as well! It has also helped us to see which way her sugars are trending and we have been able to intervene before she hits some dangerous lows. I can’t imagine life without it now and how we did it prior to cgm’ing…and it has only been a week. Now, we will have some decisions to make wrt the length of time we want to cgm with her (all the time or on occasion). We will be starting a pump with her within a month and we are very excited to get moving on that and see how much more we can manage her highs and lows…especially those morning ones post breakfast.
All in all…the dexcom cgm has been a great tool for us so far! I love the freedom it is starting to provide us and the comfort level of potential sitters/grandparents.
I am curious what pump your daughter uses. My son was 3 (now 5yrs old) when he was diagnosed. We use the Animas IR 1250. We love having a pump and find the flexibility amazing.
Hi! My Son, Aaron, was diagnosed at 11 months and has been pumping since he was 4. He is now 8, will be 9 in May. If you all have any specific questions, feel free to ask! Aaron is on the Minimed 522 pump. We tried to get the Omnipod last year, but were denied by insurance. We decided not to appeal, in hopes that in the near future, we can get the continuous glucose monitor with the 522.
Hi! I’m Amy and our son, Steven, was diagnosed at 14 months old after almost a week of not knowing what was going on with him. We even had one doctor tell us it was chicken pox. We’re coming up on a year now and some days, I still feel like just breaking down when I think of all he has to go through. But, considering we almost lost him when he had dka, I feel horrible for even thinking about it.
Right now, we’re on Lantus once daily and Novolog 3x daily. We were supposed to go back to the ped endo at Riley’s today but he was feeling bad (yaaaay, summer flu!) so we had to reschedule for October. We’re definitely asking about the pump for him, since it’s more precise and there are more things he can do. My parents are afraid to take him overnight because of the shots and their fears of getting it wrong.
He’s only had one seizure so far, back in December, when he got about 40. Of course, now we have the tendency to try for higher ones not to fall back again. smacks head We know we shouldn’t, but it’s just so hard.
I have a seven year old daughter, who was diagnosed at the age of 3 1/2. We went through NPH + Novolog, then Lantus + Novolog, and have been pumping for almost two years now. I have to say that insulin pump is the easiest of all routines we’ve tried! It gave us so much more flexibility at home and in school. Her A1C gone down right away and there is no more strict eating times to go by. (Sick day management is easier too)
Her daily Lantus amount was 2.5 unit and her carb ratio was ~ 1:20, so Minimed 522 was able to accommodate her small needs very easily. I don’t think we would ever go back on shots if we don’t have to, but what works for us might not work for everyone.
PS: we got CGMS too, but taking a Summer vacation from it.
I was diagnosed with type 1 when I was older, but I loved babysitting and was able to find a family with a four year old son with type 1. The parents went on their first date in years leaving their son at home He and I measured our blood sugar together, carb counted together, and gave insulin injections together.
It was really good for both of us to not be alone! Here is a blog post that I wrote about it.
When you are ready, consider finding a teenager or young adult with type 1 to babysit for you! You can enjoy some breaks and your child can have a role model who knows the ins and outs of how to manage life with type 1 diabetes.
You can look around through a JDRF support group-- or even your endo.
I admire all of you for the daily struggles and triumphs that you live through!
When I was diagnosed at 1 year old in 1962, my parents had me on one injection a day with U-40 regular and NPH.They had no glucose meters and used to put Test Tape in my diaper to get a reading. Mom had to boil the needle every day.
When I think about what a great job she did, and what she must have gone through, I am always touched…
The good news is that I am now 45 and have been on an insulin pump for about 15 years and a CGMS for about 2 years, and am in great health. My parents taught me to be self sufficient and to have a positive, healthy, and grateful attitude toward life and my diabetes.
Keep going Moms and Dads, your kids love and appreciate your hard work and guidance even though you may not know it right now…
Peace…Cheers…
Hello! I’ve enjoyed reading everyone’s posts and finding emotions and situations I completely empathize with. Our daughter Elisabeth was diagnosed in Feb. of 2007 at 15 months after 1 week of extreme sickness, weight loss, etc. which we didn’t know was DKA. She was in PICU for 9 days as they worked on bringing her sugars down, finding the right doses, and teaching us how to care for her.
3 months after her diagnosis, she started on the Medtronic pump and we’ve been very happy with it. We’ve loved the flexibiltiy it gives us and the ability to dose in public places. however, I do have a LOT of people comment on her “beeper” and I have to let them know it’s a medical device.
Any advice on how to handle older children wanting to eat when it’s not the appropriate time for the diabetic child? I find this a challenge and I also feel I’m forever in the kitchen doing multiple snacks, meals, etc.
We’re still potty-training Elisabeth. Anyone have tips on what to do with the pump as they begin using the potty themselves? For now I just clip the pump to the back of her shirt, but know that she won’t be able to do that herself as she becomes more independant.
I read Sarah & Puffle to Elisabeth and she loved seeing a girl who had diabetes. When I read the part about Sarah doing blood checks, she said, “I do that…I check my blood too!” It was a lightbulb moment for her when she saw that others do that as well.
Take care & keep up the great work,
Jessica
Mom to Elsie-Leah, 5 years old & Elisabeth, 35 mo. old (d’xd 2/07)
I was diagnosed at 13 months and am now 45 years old. Just so you know, there is hope and joy all along the way, and your little one can live a long healthy life. Technology and medicines have dramatically improved over the years and have afforded many happy, healthy, and long lives…
Hi Jessica,
Cadence, our daughter who is now 23 months old is on the pink animas!! We all love it!!! We are starting her on the potty and we haven’t really had much trouble figuring out what to do with her ‘backpack’ (what she calls her pump). Since she is still so young and does not need to be accessing her pump on her own, we have sewn many creative pockets to hold the pump on the backs of her shirts. These seem to keep it up and out of the way and the tubbing from hanging out and snagging on anything. When she needs to be in her stroller or car seat we just pop the pump out of the pocket and place it beside her, or slip it into her pants or jacket pocket. That way she is not leaning back on it. I also have her in gymnastics and I just place a thin sponge in the pocket on her shirts to help with some cushioning on her spine.
Good luck with the potty training! I hope that helps or gives you some ideas!
Nicole
Hello, I am a mom to Rory, 22 month old, diagnosed Nov. 17th 2007. I am in need of touching base with other moms of toddlers with diabetes. He is currently on Humalog and Lantus, but we are awaiting a call for a pump trial for the Medtronic Paradigm pump. His A1C at his last visit earlier this month was 9.4. It basically has been unchanged since diagnosis. It is so frustrating to see he BGs look better “on paper” , but his overall control not really improve. I am curious about other toddlers and what their typical carb ratios are for each meal with Humalog and their dose of Lantus. And do any of you go to meetings or groups? And if you do how did you find out about them in your area? Most of the groups I see are for older children, which will be useful eventually. And what books or sites do you typically refer to for info. I should be doing more reading and researching but I get a little overwhelmed at times with keeping up with him and our other children, (5 year old daughter and a 3 1/2 month old daughter). Looking forward to discussions with all of you.
Natalie
Wow you have your hands full! I know how challenging I find it with 2 young ones, but can only imagine how challenging it is with a newborn! However, as you read and learn, your confidence is going to grow which is what I’ve found.
Elisabeth takes only humolog in her pump and her breakfast carb ratio is 1/15 cbs., lunch is 1/20 and dinner and bedtime snack are 1/23. One thing that really helped Elisabeth was to have the 3 day CGM test done to better map out her insulin needs. You can ask your endo about this and it’s another device Rory would have to wear for 3 days continuously. It’s not easy but I really saw an improvement in Elisabeth’s control afterwards. We changed alot of her basals and carb ratios.
He and I measured our blood sugar together, carb counted together, and gave insulin injections together.