My two year old was diagnosed about 2 months ago. For the past two weeks he’s been back at preschool, but they just told us the routine was too overwhelming for them. They are checking his blood sugars when the monitor suggests he may be going low and treating lows; I am administering insulin twice a day after his meal and snack. He’s been going low or at least “trending low” so often (typically at least 3 times a day) that one teacher is having to take a substantial portion of her day to treat his lows, and they’re saying that’s unsustainable. They can’t treat based on symptoms because he has hypoglycemia unawareness, so that means they do have to check the CGM.
Honestly, I just don’t know what to do. I feel so overwhelmed! For now one parent is going to go in and shadow and pick up care, but obviously both of us are working, so that is not a long-term strategy. They suggested finding a paraprofessional if he can’t be stabilized, but I have no idea how to go about doing that and he’s only 2 so I’m not sure what he qualifies for as far as aid. I know that there are some legal protections but it just seems like so much to wade through while dealing with his regimen. I don’t want to have to quit my job and my kid seems depressed when he doesn’t get to be with his buddies and brother at school. But I just am having trouble figuring out how this all would work. I know that we can work with the endo to reduce the odds of his going low somewhat, but is it realistic to expect that he will be stabilized enough to only have lows a few times a week at care, which they feel is more manageable? Or should we realistically expect at least one low a day? Or what is “normal?”
First of all, I feel badly that you are having such a hard time. The first few months are the worst!
I can offer some suggestions, but probably not as many as you need because I’ve never managed a toddler with Type 1 (my daughter was diagnosed when she was 11.5 years old.) After you read the rest of what I’ve posted, please consider going to the Children with Diabetes Forum:
http://forums.childrenwithdiabetes.com/forum.php
because there are quite a few parents on that forum whose children were diagnosed around the same age as your son.
If your son is going low often, perhaps the dosage of his basal insulin needs to be adjusted down. Or, depending on when lows are occurring (if there is any pattern), his I:C ratio(s) may need adjusting. One thing I remember reading a few times on the CWD (Children with Diabetes) forum was that many parents got their toddlers on insulin pumps ASAP because their doses were so low that it was next to impossible to adjust doses, e.g. 1 unit was too much, but 0.5 units was too little, and how do you accurately dose in 0.25-unit increments (or even smaller increments) when you are using a syringe or pen? Depending on the particular pump, you can dose in increments as small as 0.025 units! Being able to make these tiny dosage adjustments can go a long ways towards minimizing the frequency of lows.
The next thing I’d suggest is getting a Dexcom CGM. I’d actually recommend getting this before going on a pump. The trend arrows are extremely helpful with your efforts to head off lows via setting temporary reduced basal rates on the pump. Also, with the Dexcom Share technology, you can check your son’s BG every five minutes while you are at work. You can add one or more of your son’s preschool teachers as Followers and set the Dexcom low alerts on their iPhones to, say 85 (I have no idea what you consider a low BG for your son) in order to be proactive and try to prevent lows before they happen.
As I said above, you can get answers to your questions that are more specific to a 2-year-old on the CWD forum. Hang in there, and keep focused on the fact that it does, little by little, get easier. Never easy, but definitely easier.
The doctor should be notified of frequent, more than weekly lows. The doctor will change the treatment so that lows occur seldom if ever. Lows are no fun. The brain doesn’t work and there’s a lot of anxiety from adrenaline.
I don’t have a child with T1, but I do have a child with special needs. And I will tell you that child care can be very difficult. While child care cannot refuse to accept your child because of special needs, they are generally not required to provide what we could consider reasonable accommodations. So while your child cannot be discriminated against because of diabetes the child care center can decline to provide diabetes care if it is an undue burden on the enterprise. According to federal law, if the child care or school accepts public funds (which I believe includes federal, state and local), then they are subject to Section 504 of the Rehabilitation Act of 73 which requires that kids be provided with assistance. Often as kids get older this is satisfied with 504 plan or an IEP.
You would likely do best to find a publicly funded day care situation which would be required to provide assistance. A large day care center would also find it more difficult to argue that it is an undue burden, particularly if they have a nurse on duty every day.
And I have to tell you, you may also need to start to work on your expectations. In the end, my wife and I had to come to the conclusion that having one of us essentially “on-call” every day just did not work. In the end we had to make the difficult decision to become a one income family and my wife had to put her career on hold for a couple of years.
Thanks for all the replies. I do think we can reduce the hypos somewhat…but the issue is, will we NEVER have weeks again when he’s running low frequently? Is it realistic for the daycare to expect that lows (or “threatened” or “diverted” lows) happen a few times a week?
I also think we’re limited by his medicine regimen. He uses diluted Humalog. We did a timed test with a food he eats every morning, and it took 1 hour to even begin to reduce blood sugar, and did so much much more gradually, versus the undiluted equivalent of the same dose, which onset around 15 minutes and went to work quickly after that. But he’s so small that we can’t give him the undiluted except potentially for one or two meals where he eats a high enough carb count. Given those time kinetics, it seems like there is always going to be a fundamental timing mismatch between his insulin dosing and his carb consumption. On top of that, he seems to have a very strong peak effect with the Levemir he’s taking.
We just got a pump but that will take a few weeks at least to work out all the dosing kinks and its’ not clear he can use the undiluted in the pump given his small doses.
My husband has already taken his 6 weeks paid leave and I have none.
As for quitting my job, I’m willing to lose money to work for six months or a year (until he is age 3 and covered by public education provisions in our city). I honestly think that if I put my career on hold it will not be there when I go back – I’m a journalist and that’s a ■■■■■■ profession to be in right now. I would rather take a rather substantial loss financially for a year than a permanent hit to my earnings for 10+ years or indefinitely. If I was in a different field – like a nurse or a programmer or something that might be more of an option. I can freelance but that would still involve hiring a nanny, which is expensive in our city – so we’d be back in the same position somewhat. And I trust his daycare providers much more than I do the average nanny. Not to mention that my kid has a personality that sort of demands being in a setting with many other kids. He just doesn’t do well when it’s just him at home. He was getting depressed the first month when he was at home.
How small are his doses? Like I said, pumps can administer doses as low as 0.025 units. Is it possible that you son is taking doses smaller than this?
Pumping eliminates the need for long-acting insulin and its unpredictable peaks and t1/2. And you just can’t set the many and different basal rates (or suspend insulin delivery with the press of a button) like you can with a pump.
I think you’ll see that you have a few more “weapons” in your arsenal in the constant D-battle once you get past the monumentally steep learning curve of beginning to pump. If you haven’t already read the following, I highly recommend the following two books which helped me immensely with pump usage (and D-management in general):
Think Like a Pancreas by Gary Scheiner
and
Pumping Insulin by John Walsh.
The parents of kids who had/have T1D as toddlers over on the Parents of Children with Diabetes forum will be able to offer you advice RE your daycare nightmare.
RE the frequency of lows, this is very much a YDMV sort of thing. Whenever I need to make relatively large changes in my daughter’s dosing regimen, we can expect one to two lows per day for a few days until I do additional micro-adjusting. And sometimes she’ll have a “run” of lows for no good reason. In a nutshell, lows are an unavoidable part of having T1D. If you run your child higher, you can avoid as many (but not all) lows, But running high has its own set of problems…
My thoughts are with you while you keep at it! Managing T1D in a child is challenging beyond words.
Yeah, so based on his current levemir dose, the basal is 0.021 per time increment. So to avoid the diluted we can probably do something like one time unit on, one time unit off – but I think the Animas time windows are half-hour increments, which isn’t ideal, while the Minimed has shorter time windows if I am not mistaken (we have Animas). Of course, we assumed he would shortly graduate to higher doses of basal and we wouldn’t need to do all these hacks. But the past few days, when he’s been sick? honeymooning? who knows? – he actually hasn’t needed any boluses given his basal. So it’s all a mess
I’m in the middle of Pumping Insulin. Can get Think Like a Pancreas too, thanks.