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How often do you have to go to school/preschool for your T1D child?

Discussion in 'Parents of Children with Type 1' started by samson, Jul 15, 2016.

  1. samson

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    We are having to go to preschool at least twice daily, to give insulin for our 2-year-old's lunch and snack. But realistically, we are there much more often, either because a site is bad or because our son has run so high that we don't feel comfortable with him eating unless we prebolus him for lunch, or if he runs low more than twice in a day, we are supposed to take over diabetes management for the day, according to our care plan. This means two to three times a week we are there three or more times in a day. Eventually we may feel comfortable with the staff doing the bolusing from the pump, but right now his day-to-day is so variable that we want to oversee the insulin management.

    This is really taking a toll on our jobs and we're wondering how much longer this can last. So I'm asking: How often do you have to take off work to go to school? How has that changed as your child has gotten older?
     
  2. Christopher

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    So are you the one dictating that you do his management at school or is the school telling you that you have to do that? Also, have you considered setting up a plan where the school contacts you to get direction from you instead of you going to the school so often? You would still be overseeing his management.
     
  3. samson

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    Right now we want to do bolusing, though they are probably also uncomfortable with doing the pump right now. We do fairly dynamic management (i.e. if it looks like he's going to go low we bolus less than the normal ratio, often bolus early for lunch if he's running high, use combo boluses if we're unsure how much he's going to eat, etc.), so we couldn't just teach people to carb count. But it's also that until last week, we were obliged to do ALL the care at daycare (including treating lows) and it's only recently that we've turned over management to preschool. They were treating his lows when he was on injections, but he had multiple hypoglycemic episodes a day and the teachers said they were taken away from monitoring other kids with that level of instability. So for a while we spent every day at daycare, doing all the treatment and demonstrating that he was stable. He's more stable now that he's on a pump. Now we're transitioning to his teachers treating and heading off lows, but I think it will be a few months before we can ask them to do more. It really sucks. But we feel like the odds of him getting into another preschool are low and though we probably would have a legal case if they kicked him out or made us completely take over care, that wouldn't help us with care right now.
    So we're hanging on as best we can. It just sucks that as soon as we turn over care to them, he's getting over a stomach bug and is running high, low, and all over the place, which makes him seem like he'll be much more work usually than he actually is.
    .... and of course, after bolusing him at 1/3 his usual carbF for lunch, he's running low, after spending half the morning stuck at 275. :mad:
     
  4. Christopher

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    Ah, OK understood. I can imagine it is very difficult to manage a 2 year old with Type 1.

    As for the preschool, have you thought about putting a 504 plan in place?
     
  5. Snowflake

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    Hi Samson, my daughter was diagnosed at age 2. At the time we were at a fantastic preschool with a teacher who had some prior experience with Type 1. Back then, my husband worked from home 2 blocks from the preschool. Even with a knowledgeable teacher who handled her MDI care, my husband was still at the school at least once a day. I seem to recall that he got called over for all lows, and my daughter also frequently declined bolused food.

    Then, during an interstate move, my daughter was briefly in another preschool that (illegally) refused to do any diabetes care, so my husband spent two months doing all pokes and boluses. He never got more than 90 minutes uninterrupted worktime in that period.

    Between the ages of 2.5 and 5.5 (until kindergarten), my daughter was in a preschool where all teachers were very motivated to learn how to care for her, and that also had access to a phone on-call nurse. For the first three months at that school, which coincided with pump start, even with ideal conditions, we were still over there all the time. We had a lot of pump malfunctions early on, and dd was also sick seemingly every week with one thing or another, which made bg control basically impossible.

    This sounds discouraging but the good news is that things eventually settled down mid-preschool. We got to a point where we were totally comfortable handling almost everything through text message communication with the preschool. For the last two years of preschool, we only rarely had to be physically present for the odd pump change or ketone check (the school didn't require it, but if a situation required checking ketones, we wanted to see what she looked like). It was nice when things settled down, but that first year did take a real toll on my husband's work life, and it probably set us both back a little bit professionally if I'm being honest.

    I think what was different for us from your situation was that we had a completely supportive preschool. The school never would have complained about treating hypos, even on days when dd experienced a lot of them. The preschool had a group staffing model, with a lot of teacher fluidity, and the teachers never let themselves get into a situation where they couldn't meet any kid's particular needs at any given moment.

    A couple of thoughts: Would you be comfortable giving some of these directions about more fine-grained control by text or over the phone? That kind of direction was a huge time saver for us. Also, what kind of preschool is your child currently in? Your legal protections (ADA and state education law) are going to vary a little bit in a private preschool environment versus what you're entitled to in public school. But it's worth noting that there are chain day cares, including Kindercare, that are under nationwide consent decrees that spell out what they must do for children with T1D.
     
  6. hopefaithlove

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    Our son was dx at 18 months old. He has been in daycare/preschool the entire time, so I can completely relate. We used injections until 7/2015 when we transitioned over to the pump-Omnipod. He's usually at daycare (his preschool program is ran at his daycare center) from 7 am until 5:15 pm everyday, eating breakfast, lunch and snack. Daycare provides us with the monthly menu and access to their kitchen. Once a month or so, I go and get carb counts directly off food labels. For foods that I can't find nutrition info on, we use best guesses. We also send him in with a variety of foods to have on hand for when he doesn't eat well with their menu (he's picky). They test his bg before eating/drinking and measure out his food/drink. We have provided them with a food scale, measuring cups. After eating, they text me his bg and what he ate. I then figure out the carb count and tell them what bolus amount to give through the pump. They text back once the bolus has been given. This still gives us control over the bolus given. The whole process of texting to bolusing takes just a couple of minutes. They used to call me or my husband before every time but we found they texting so much easier.

    They treat lows and we manage both lows and highs through phone calls as needed. He has dexcom 5 mobile, so we can watch his numbers remotely. Overall, 1-2 times monthly we go to his daycare for the pod that has fallen off and sensor that needs replaced. I hope this helps and good luck with everything.

    Juliann
     
  7. samson

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    Hi Snowflake,
    This is really helpful info.
    Our preschool is private, and not affiliated with a chain, which means fewer legal protections. But, if I'm not mistaken, it's part of a larger elementary school, not religious, which means that the school district may still be on the hook for addressing his need for accomodations if he's 3 years or older. Still not totally clear on what's legally in place.
    I think eventually there are one or two teachers I would feel totally comfortable with giving directions by text and this is something to consider in two or three months.
    I wouldn't say our school is unsupportive, they have good intentions and the teachers clearly adore our son, but it takes a little bit of effort to ensure they are given time to be trained on how to use the CGM and interpret the data, and some teachers (who haven't been trained yet) still don't understand that he doesn't need to follow all the rules around food, that if eating lunch a little early is what it takes to prevent a low, that's worth it, etc.. The other issue is just more structural. It's a big old building with a huge yard, great for kids...but bad for cell phone reception and WiFi. So whoever is carrying the receiver for the Dex has to be aware at all times of where our kid is and either stay close to him or hand it off to the nearest teacher. There's also a 1:10 or 12 teacher to student ratio. Given that I've been there for two months, I see how easy it is for his care to get lost in the shuffle when things are chaotic.

    As a follow-up, when did you do training for the teachers, and how much time did it take? We have done one one-hour session, and the rest have been very rushed and informal 10-minute sessions. We use a laminated index card with step-by-step instructions for avoiding and treating lows which seems to work pretty well even with minimal training or a sub, but I still feel like teachers aren't totally on it and that there could be some instances where he could slip through the cracks.
     
  8. Snowflake

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    When DD started, we did a deep-dive one-hour-plus training session for all the full-time teachers, with the nurse consultant also present. Then, for the first couple of weeks after that, we were around nearly constantly to answer questions about every little thing, including carb counts so that she could participate in the hot lunch program.

    Over the almost 3 years that DD was there, we did one additional one-hour training with the nurse when another full-time teacher joined. And we also did a refresher training for one incredibly on-the-ball teacher who requested it because she felt like she was missing something during a period of particularly crummy numbers (the teacher wasn't missing anything -- it was typical T1D mindgames). We also did several on-the-fly 10-minute overviews for substitutes and volunteers, who handled the occasional bg check but who didn't have primary responsibility.

    As DD moved to different groups with different head teachers, we would change which teacher was our primary point of contact for texting. And as she got older and we got better at diabetes, we got more comfortable asking the teachers to set temp basals or run extended bolues, etc.

    On the issue about Dexcom and coverage -- we put the receiver in a SPI belt fanny pack that DD wore on her waist so that the teachers never lost CGM data, and also so that we didn't need to worry about the teachers losing track of the device (which did happen one time, and I spent an hour basically ripping the school's furniture apart!) That doesn't solve the wifi/Dexcom Share issue, though.
     
  9. StacyMM

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    My daughter was attending a daycare when she was diagnosed (at 2) and we kept her out for a short while. My mom came and did the hospital training with us and she watched her in the beginning. Once we got our minds wrapped around it, DD went back to daycare. Training the teachers took about an hour, IIRC. It's been a long time and we have trained so, so many people over the years but that's my best guess.

    DD was on shots at the time. We hadn't even heard of CGMs so we didn't have anything like that. We made charts for the teachers to use when dosing and they called us if they wanted to double check something, or if she was repeatedly high or low. We didn't go to the daycare very often and rarely had to pick her up. When we did, it was usually because we chose to, not because they made us.

    That said, during one transition to a new class (age-based groups), the teacher was very resistant and the owner supported her. They started calling us for ev.er.y.thing. They'd test her after she ate and say she high, they would call us right after treating a low and saying she wouldn't come up, even though it had been 2 minutes, etc. We decided to find another center. Over the years (kids were in some form of daycare for 8 or 9 years) we changed several times. For us, finding an in-home caregiver was the best move we ever made. We'd drop the kids off and know they were fine. She even watched them the summer after DS was diagnosed, so she had two T1s to watch...and I recommended her to another T1 mom, who used her, too. If I had it to do over, I would have switched from a center to a home caregiver so much earlier.
     

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