Hi. I am new to the group and was wondering if anyone else has a child with similar circumstances. My daughter was diagnosed with Type 1 at 18 months old after a severe reaction to the H1N1 vaccine. The CDC claims we are the only case in the entire U.S. Anyway, we are on Lantus 1.5u in the AM and Novolog - .5u/8g bkfst, .5u/15g lunch and .5u/20g dinner. Mainly after breakfast (and sometimes other meals), Aubrey goes through a phase of being kind of intoxicated - she is wobbly, falls down alot, normally a talker turns silent, not really coherent, motor skills are definitely affected. It lasts maybe an hour or so, but not after every meal. I brought this up to our Endo and she seemed kind of puzzled by it. We have seen it a few other times and tested her to be in the 400s, other times 200s, other times 100s - with the same kinds of symptoms. I was thinking it might be due to big drops in BG when the insulin takes effect, but I really don’t know. She can drop 200 points in 20-30 minutes time as well. We are trying to figure this all out and the answer that there is no rhyme or reason to anything regarding BG control in a toddler is kind of frustrating. Anybody have a child with similar symptoms?
The only time that we ever saw a similar incident with David was pre-diagnosis. He was playing hockey and fell on the ice, he staggered to get up and fell again. After the third fall he managed to pull himself up off the ice and over to the bench. He did return to the ice and continue to play that night and as this was pre-diagnosis (by 2 days) we have no idea if the incident was caused by high BG’s, low BG’s, or more likely, like you mentionned a rapid fall from high to low. He ate a full meal about 1 1/2 hours before the game which would have raised his BG significantly, so could very easily have been reacting to the effect of the exercise dropping a high BG too quickly. He was 10 years of age at the time, and had absolutely no clue that something was wrong other than he became extremely frustrated/agitated trying to get himself up off the ice.
Next time it happens, maybe try to get a short video to show the Endo in addition to checking her BG. The visual might help the Endo to gain some understanding of the symptons, to be able to help you guys to figure this out.
OK, some questions for you. First, do you keep track of what foods seem to have the strongest effects on her? Second, are you giving her the Lantus in the a.m. because your endo told you to, or is it just because that’s when you started? third, are you using diluted insulin in a syringe, full strength insulin in a syringe, or full strength insulin in a pump? and fourth, have you ever had her tested for celiac disease or other food allergies?
I can think of several possibilities:
One, if you’re giving her the insulin after she eats, it may simply be that depending on what she eats, the insulin isn’t able to counteract the rise in blood sugar quickly enough to prevent her shooting sky high. There may be specific foods that do this to her when others don’t - my son Eric, who was diagnosed at 18 months too, can shoot into the stratosphere on just 3 oz of chocolate milk, but nothing else seems to do that to him. So if you’re not already doing it, try keeping a food diary for her that notes exactly what she ate, how much of it she ate, and what her blood sugars did in the hour right after she finishes (and if she had the symptoms you mention). Chances are good that you’ll find it’s specific foods that do it, and if you find that this happens with breads or other wheat-based products, get a celiac test ASAP, but be aware that other food allergies can sometimes have this affect. The fact that she had a bad reaction to the H1N1 vaccine as well as developing an autoimmune disease indicates that she has a pretty hypersensitive immune system, so it’s not at all out of the realm of possibility that she is allergic or sensitive to specific foods, and that could be what’s causing the symptoms too. (As far as the vaccine is concerned with respect to her diabetes, the two could be related, but I tend to doubt that the vaccine actually caused the diabetes - my guess is that she was already undergoing a gradual autoimmune attack on her pancreas and that the H1N1 vaccine simply kicked the immune system into such hyperdrive that it tipped her over the edge into full blown diabetes quicker than she otherwise would’ve gone.)
Another possibility is the timing of her Lantus may not be optimal. All forms of insulin have a specific activity profile, and while Lantus is a long-acting insulin, it doesn’t necessarily last a full 24 hours for everyone, and it takes a couple of hours to really get going in the bloodstream, so by giving her the Lantus in the morning, she may not get the full effect of it during the first 2 to 4 hours of the day, which is mainly when she’s eating breakfast and/or lunch (we were told to give Eric his Lantus in the evening just before bedtime for just that reason–so he’d have some active background insulin working on his breakfast while we were waiting for the Humulog to do its thing). If your endo didn’t specify to give her the Lantus in the a.m., or even if she did, you may want to talk to her and see if there’s a way to switch to an evening dose instead, to see if that’s going to solve the problem.
The other possibility really hinges on whether you’re giving her the Novolog insulin with shots or with a pump, and if the former, if you’re using diluted insulin. I’m assuming from your description that you’re using shots, but not diluting the insulin, so my next thought is that it could be just that the insulin isn’t fine-tuned enough for her needs. Our protocol with Eric was to dilute 1 unit of insulin with 9 units of saline so we could give him smaller amounts than .5 units at a time (by diluting it, 1 unit on the syringe = 0.1 units of active insulin); the drawback to that, however, was that there was never any way to guarantee that each unit of diluted insulin had the requisite amount of active ingredient in it, so we had to tolerate higher blood sugars for the duration of the time he was on shots (which was one of the main reasons we switched to a pump as soon as we could, and I highly recommend it). I think you may be correct, that the symptoms are related to rapid changes in blood sugar, and at a guess I’d say it’s probably related from using more insulin than she needs at any given moment simply because you can’t measure in small enough increments to give her exactly what she needs.
It might also be worth switching to Humalog from Novolog to see if that makes a difference - I’ve seen others say in this forum that the two have different effects, so it might be something as simple as her not reacting well to the Novolog.
My son was diagnosed at 23 months (he’s now 5), and I never noticed anything like this. He was on a pump within a month; you might consider that. You can bolus before meals (at least partially, so you can cancel the rest if they don’t finish their food). Bolusing a few minutes before meals really helps reduce blood sugar spikes. You could theoretically do this with a pen/shots, but it would require more shots after eating if they ate everything. Or force feeding if they didn’t and you had give the whole shot… We used a pen for a while and finally found out that if we only gave a 0.5 unit, the pen wasn’t accurate (the lowest it could give was one unit), so that may be an issue, I don’t know. My son does seem to react to quickly falling blood sugar levels, and feels funny as a result-- even more than if he’s actually low. So it could be that.
Thanks so much for all of the info. She was tested for celiac and thyroid issues when she was diagnosed six months ago and was negative. I did keep a comprehensive food log for the first 4 months, but found it was taking over our life and not in a good way, so I stopped doing that. There are many things that a very small amount will shoot her sky high…raisins, regular milk, anything that has sugar added like yogurt, oatmeal, you name it. I give her her novolog shot right at the first bite of each meal and basically force feed her the amount that I need her to eat if necessary. She is actually a pretty good eater (so far it hasn’t been too painful).
I think you may be right about the Lantus timing - we have our next Endo appt in the next month and will ask about switching because breakfast is definitely our toughest meal. She takes twice the dose of any other meal, does not come down by two hours, but in the third hour drops 200 points VERY rapidly, so I have to watch her closely and get a snack in to counteract the drop or feed her an early lunch. It is very hard to take her anywhere in the morning because she goes from “drunk” for a couple of hours to low in a matter of minutes. I do have concerns though because Aubrey still has some nighttime 2am lows if she gets any extra exercise during the day…I worry that the Lantus may be too strong if we administer before bedtime. We are still struggling with the fact that a 10g (free) bedtime snack shoots her into the 400s and makes bedtime a fight. It comes right back down by about 1-2 AM, but for about 3 hours she is crazy!
Also, due to our insurance change, we are switching to Humalog in a couple of weeks - maybe that will help as well. Also due to insurance, we cannot switch to the pump yet - I do worry about her age with the pump…did you have any problems with your son trying to rip it out??? Aubrey will be two years old soon and is very particular about clothes, bandaids, socks, anything on her skin…I cannot fathom her with a pump attached to her body. Anyway, thanks so much for your reply - I appreciate you taking the time to share your experiences with me.
I would like to do this, but she is already developing fatty lumps from the shots…I am trying to keep them to a minimum - one per meal. We haven’t tried the pen yet for that exact reason - she gets half units at lunch and dinner and we also do a few .75s and .25s. So until she starts requiring more, we are sticking with syringes. We can’t get a pump yet due to insurance and also I don’t think she is ready for it…what is your experience with the pump and your son’s young age? Did you have any issues with him pulling on it? Is it hard to sleep with?
Hi Kris, my son Santi was diagnosed at 18 mnths as well. He’s 2.5 yrs old now. We started him with syringe as well for the first 4 mnths and then the insurance gave us a variance to get him on OMNIPOD pump thorugh the help of our ENDO. Our insurance is AvMed, and the approved pump they wanted him on first was animas. Well, by our research, we did not want anything with a TUBE attached to him bc being so little, so it was OMNI or syringes for us. It has given us so much flexibility and freedom in managing his diabetes: He can eat whaterver he wants whenever he wants as long as we know the carb intake. You can also stop insulin in case he’s too low OR, the best feature with little ones… since you never know how much they’re going to eat, you can give him half or a third of the dosis of the meal before and the rest during the meal or just after… this has completely avoid the need to FORCE him to eat, which you know how it affects ALL in the family. Place all your efforts on getting an insurance to cover for the pump. We’ve had minor issues with the use of the pump, read the omnipod group discussions, there are many great tips to avoid common problems, but my suggestion is to get it as soon as possible. Do not be afraid on placing it on your daughter. We place the omnipod on Santi’s butt alternating side to side every 3 days, and using baby oil to get it off after a bath and placing neosporene over the place it comes off. It does not hurt – almost as much as getting the shot-- it has an automatic insert mechanism, so you don’t have to worry about pinching, and it’s the thiniest cannula in the market. Best of luck for you & your little one. Elkin.
We have had no problems whatsoever with the pump; he’s 5 and has had it since he first turned 2. He has an Animus pump, which has lower basal rate options than a minimed. The tubing is not a problem; I think it’s better than having a bulging thing sticking out of one’s body (omnipod), but that’s just my preference. We also have the insertion site on his bottom-- the only place with enough fat!
Like SANTI said, the pump gives much better options for toddler feeding-- partial boluses ahead of time, the ability to deal with small meals and snacks throughout the day… etc. Your endocrinologist may be able to write a letter to the insurance company advocating the pump for her; ours wrote one and they even paid for a continuous glucose monitor (CGMS) for my son which has really been invaluable. He wears both gadgets on a belt day and night, which he never minds. He’s never pulled anything off, and we cover the insertion sites with IV3000 sticky thingies so they have never just come off accidentally. Actually, we keep the CGMS by our bed at night so I can see what his blood sugar is doing at night without testing or getting out of bed, just by pushing a button.
You might also want to mention to your doctor the possible increased risk of cancer with Lantus (see http://www.diabetologia-journal.org/cancer.html). These studies were done in older people, but children may be more susceptible to any possible effects. Not to cause undue worry; they don’t know yet, but there is a potential issue here.