Hi! I'm new here

Type 1 and LADA
1

Hey everyone! I was on yahoo answers and someone recommended that I come over here. Maybe you guys can help me out more than they can. So sorry, this is going to be long. My son is 2 years old, and he was diagnosed with type 1 about 2 months ago. He had severe DKA, and was in the ICU for a while.

When we first brought him home, they had him taking two shots a day of Novolin and Novolog. He had some incredible lows, a few times in the 30’s. He started honeymooning, so they switched him to 1 shot a day of Lantus.

He was getting high before bed, so they added novolog at night. I have slowly had to add in Novolg at every meal, because I guess he is coming out of the honeymoon phase.

Here’s the problem: He gets high at night while he is sleeping, but somehow he drops real low when he wakes up. I had the idea to completely take him off Lantus. All I was giving him was Novolog at breakfast, lunch, and dinner. This was working perfectly for him, it cured his morning lows, and he had a perfect reading at every single meal.

In fact, it hasn’t been this good since we left the hospital. But…,…
It gets really high at night. I don’t know what to do, because if I give him anything to lower his night time sugar, it will also lower his morning reading.

I talked to his diabetic educator, and all she did was to place him on Levemir. He is supposed to take 2 shots a day of Levemir and Novolog. This started today. This woman will not listen to me at all.

Here are his readings when he was on my plan, just Novolog at meals: (keep in mind that at his age, his target range is 100-200)

Before breakfast- 146
1 unit of Novolog

Before Lunch- 117
1/2 unit of Novolog

Before Dinner-172
1/2 unit of Novolog

Before Bed-103

Now this is what it looks like today, after I switched him to Levemir

Before breakfast-127 (was good because we were on my plan the day before)
1 unit of Levemir
1/2 unit of Novolog

Before Lunch- 70

Before dinner- 256
didn’t give him the Levemir like I was supposed to
1/2 unit of Novolog

Before bed- 60

What is your suggestion? As you can see, it was great when he was just on Novolog. Except for the middle of the night. My diabetic educator won’t listen to me. Is it just possible he doesn’t need a basal insulin right now? If he doesn’t, what can I do about the middle of the night? Maybe a little of Novolin at dinner, just to last through the night and it’s gone by 5 am? Thanks!

2

Welcome to the community! Glad that you found us! Sorry to hear your son’s recent diagnosis.

My feeling is that he should be on a basal insulin. That can help preserve the functioning of his pancreas. I would be hesitant to take him off of the basal because we need insulin all the time.

If you are experiencing severe lows, then you need to figure out which insulin to reduce and when. You can also dilute insulin with saline solution, which makes it easier to measure out small doses. It’s tough because he’s such a little guy that he needs really small amount of insulin. Diluting would enable you to give him slightly more insulin at one point in the day (before he is usually experiencing highs) and less at another point (before he is experiencing more lows).

Honeymooning is a tough time because it is hard to predict how much insulin he is producing when. This means that you might have some unexplained highs and lows, which are very frustrating. I know.

3

i have suggestions =)

who is helping you with this? your educator doesn’t seem too engaged, please get more help! If the CDE, endo, other doctors, etc. are unresponsive please seek another one.

buy the book Think Like a Pancreas, by Gary Scheiner. Amazone Link Here $11.00

A protein/fatty snack, like peanut butter on crackers can provide a long slow source of carbohydrates, perfect for overnights. Also there are more expensive “glucerna” solutions but I like peanut butter. if he has peanut allergies you can also use cream cheese. The calorie king book is a huge database of foods with fat/carb info.

also, sorry about the recent diagnosis I bet this seems overwhelming. You can do it there are plenty of us here who have. I was fairly successful on shots for 29 years (even with the terrible insulins we had) before I switched to an insulin pump. if you need any help please let us know!! good luck!

4

Welcome!

Your CDE needs a swift kick. I don’t know much about children and diabetes, but we do have people on here who do and I am sure they will be along to offer things that have worked for them. But your CDE should be a better listener/partner in this.

Question–it sounds like they have you using a sliding scale instead of matching to carbs for meals (maybe this is “standard” for children)?

Does he have a play period after dinner that needs a larger snack (in essence activity driving the low and the rebound high later in the night)?

I was getting rebound highs from nasty lows at night that we didn’t find out about till I got my Continous Glucose Monitor…just some things to think about

5

Kristian Welcome to your second home. I don’t know anything about Levemir, but have couple of things to say:

  • I was diagnosed at age of one year and a half, now am 28 enjoying my life. All thanks to my parents love and care. You are doing a great job and am sure he will treasure you when he grow up.
  • Am not sure about your educator, but for me during all those years, the best thing that worked with me is taking a short acting insulin (Humalog, Novolog) when I eat and at bed time I have a long acting insulin like Lantus, since it will help in keeping my blood sugar in range during the day.
  • Something else that you need to keep in mind is that after a low (70) usually there will be a high (250)
    -It will be good to have a snake at bed time and probably don’t go to bed unless he is above 120, plus that may be you can have a blood test when he is sleeping around 4 am or 6 am ?
  • Usually you need to try something for a week to see if it works or no, every day is different!

Hope this helps

6

I agree with the previous posters. I have an 8 yo with D and we have been on Lantus and Humalog since the beginning, counting carbs at all meals and using an insulin: carb ratio. I discourage you taking away his basal insulin (levimir or lantus) bc that keeps his bg steady all the time. Lantus does have a peak at about 5hours I am not sure about levimir. But the idea of breaking up the lantus/levimir dose is to help give a more steady dose of insulin around the clock.

Understanding how food, fats, protein, carbs all affect his eating is crucial in your management. If your CDE is not willing to work more closely with you - I would call and ask to speak direclty with your endo. Is your endo a pediatric endo? It is crucial that you work with someone who specializes in children.

The insulin:carb ratio will help so that you can match his insulin needs to his foods. Also understanding how activity affects his bg is crucial in his management. Sometimes before activity as well as carbs - will will want to give something high in protein such as pb or more fatty. Protein and fats take longer to break down into carbs. But this can also affect your 2 hour number. So knowing what he ate as well as how much is important.

Is she having you log your numbers as well as your carbs? In our log book I put a star next to the carb entry when she has high fat or protein with her meals.

If you are also finging that 1/2 unit is too much - you may want to investigate the possibility of a pump which allows for much smaller increments of insulin dosing. We made the switch a few months ago and it has been a trementdous help. 1/2 unit for Willow would bottom her out if she was not already over 250. Her i:c is 50, 60 and 70 depending on the meal. These are very high i:c ratios so giving insulin by shot was really hard and often caused her to be low more often . . .

Please get to talking to a more educated endo/CDE. YOu need the support and your baby deserves it!

I hope some more of us parents who have younger toddlers chime in. Also - the book - Using Insulin by John walsh is great too . . .

Welcome to TuD - its a wonderful community full of lots of support and a wealth of knowledge.

Vicki

7

Thanks everyone! It looks a lot better today, I am just wondering what it is going to look like overnight.

8

I had no idea you can dilute insulin. If all else fails, I will definintely ask my doctor about that. Thanks!

9

Thank you, I’ll have to check out that book!

10

I highly recommend this book as well! It’s a very comprehensive guide.

I know some kids with diabetes who work in a mandatory scoop of ice cream before bed. He had an injection and an ice cream, which digested slowly and kept him steady through the night. Perhaps ask your endo about this.

11

All they do is tell me how much to give him at first, and then I adjust it over time. I don’t really match carbs to insulin, he eats the exact same things everyday. I guess I’m on the sliding scale??? I don’t really know, lol.

Yes, he does seem to get really active after dinner. Maybe that is what’s happening. Thanks!

12

Thank you for the encouraging words!

13

Can I also make a suggestion that you check out the website:

www.childrenwithdiabetes.com

This site is amazing, however, I think there is a larger number of members who are adults here, whereas the above noted website generally has members who are parents of T1 children and with a wider range of ages of children. Babies/toddlers and newly diagnosed are most definitely not treated even close to the same as adults and for that matter not the same as children over 4.

The website is busy and can be overwhelming, but I have found if I had a question and even in the middle of the night I got a response(s) almost immediately. You may also find some families in your area who can suggest another CDE/endo team.

I do agree with others here that you need to speak with your CDE or endo about carb counting, activity and so much more and if you find you are not getting the support you need there you may need to seek another even it means driving an hour or more to get there.

Take care and let us know how it all works out for you and your family.

14

Get the CDE/Endo to get you a CGM (Continuous Glucose Monitor), for a few days at least. They need to stop guessing. Talk to adult type 1 to get insight on what management is all about from the D side as well as other parents.

The book is great. It should be a first read for any type 3 (someone who cares for or lives with a T1) or type 1 D.

Good suggestion on the protein/fat food for the night. If you can’t get a CGM, check bg every hour during the night. Seems like overdoing it, but that is the only way to ID what is happening. Get him on a pump if the basel needs to be varied during the day.

You will do great. If you want a little motivation, go to http://www.teamtype1.org/ and read the bios of the type 1 team members. Also, look for a local JDRF org, they have lots of resources.

I’m at 38 years as a D w/o complications. One warning, your son will be tough and stubborn forever. T1s can be a tough crowd.