Should I ask for each teacher to keep a special candy jar just for Liam?!?! Think they’d go for it? hehehehehe
@Chris, I’d love to see a copy although I imagine our requirements will be a bit different since our son clearly can’t be trusted to treat lows on his own yet.
Just PM me your email address so I get it right.
We put a gallon ziploc with low treatments and toddler sized juice boxes in each classroom. A couple of the teachers even monitor it and tell us when it is low.
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I have been told that the 504 plan isn’t an all inclusive document that gives your child the right to do anything. Meaning, if they don’t agree to input bolus/carbs in the nightscout care-portal, they don’t have to. If they don’t want your child to treat in class–they don’t have to. Basically, this is an agreement that both parties have to sign off on. A negotiation that can vary depending on who is negotiating. There are very basic guidelines that they must adhere to, but defiantly don’t include newer technologies.
It is more than an agreement, it carries the weight of federal law. Does every child and teacher have to follow every article in the agreement all the time, no that doesn’t happen in reality. But these plans are very real, and you can appeal them if you don’t agree, and they have consequences if you don’t follow.
My school takes these very seriously, and I suspect that most do.
@Bradford, so some parents have told me the 504 has fewer teeth legally than the medical care plan provided by your doctor. In other words, you need to get your doctor to say that certain types of medical care are medically necessary in her written document in order for the district to be obliged to comply.
Most districts will comply with things that both lessen their liability and reduce the workload for their nurses, but you always get a few who push back against even common sense things (like being allowed to use WiFi for parents or using Night Scout for monitoring.)
Obviously if you have things in your 504 but not in the medical document you can then lawyer up and throw your fate onto the mercy of the courts. That’s such a worst-case scenario though 
What I am concerned about is that our doctor is very supportive of us and how we care for Samson, but it’s hard to imagine she’ll say all the things we do are medically necessary. After all, there are people in her practice with a much more bare bones medical care plan, and they typically are doing *okay. I mean, not okay according to my standards (A1C of 8.5 is not okay), but given that 80 percent of her patients are in that less interventionist group, it would be hard to argue it’s simply medical standard of care.
Another worry that scares me is a nurse who basically refuses to alter ISF or carbF based on a parent’s request, but instead will go only what is in the medical care document that is issued once a year. I think some doctors put in fixed ratios because they don’t trust parents to adjust those ratios, but I’ve heard it’s important for the document to say that nurses should comply with normal adjustments made by the parents to those treatment guidelines. Although if something is programmed into the pump, my guess is that it will just automatically lend itself to the nurses going with the adjusted ratios. It gets trickier for those on shots.
if what you’re concerned about is monitoring things like carb treatments through NightScout, or things entered into the pump, you could always set up openAPS or something similar. The bolus history is automatically logged and uploaded. You’d still need to enter carb corrections through NightScout, but you could always ask people to enter the carbs, with a 0 bolus, into the pump, and it gets uploaded that way too. I am not sure but I think some people run it open loop. Of course you’d need a compatible pump.
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It does carry the weight of federal law, which is why some schools (possibly just in my area) don’t sign off on plans that include intensive management. In their eyes, these kids are walking liabilities.
Interesting, our pediatric group asks us to send in changes anytime they are substantial, and they re-issue the medical care document to the school. They even said in some cases they update the paperwork with the school weekly. Our son was older so we didn’t need that, but hopefully your group issues the updates as well. I would feel hamstrung to have to live with an ISF or carbF once a year.
yeah, seems like if you get a combination of an outdated Endo practice and a recalcitrant nurse or district, you could be really up a creek
That would frustrate me to no end, especially now that I have been treated so well by our current school district. I hope they see the light soon and do what is in the best interest of the kids.
@TiaG, I like the idea of openAPS or Loop, but am resistant to move away from a tubeless pump…especially when Omnipod Horizon will be releasing relatively soon.
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@Bradford, yes, totally agree that if you’re set on tubeless, so far there’s no way to accomplish that. I know folks in the OmniPod trial going on right now. My guess is it will be out either late late next year or the following year. That means just one year of roughing it out with homeschool or public school before things will be substantially easier. At least, I *hope.
We’re definitely concerned that the school district will balk at going along with all our homebrew gear, because it’s not an FDA-approved medical device. We’re hoping that by the time Samson is in K (2 years) we can get him on something commercial. But we’re willing to keep him at his preschool another year (which has a K-5) if it means his care will not be compromised.
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My hope is that the team at http://www.openomni.org/ can crack the Omnipod comms soon.
The upcoming Horizon release will not include AP, it will just be the phone. The AP stuff is a little further down the road.
The Horizon comms will be completely different, it will use bluetooth instead of RF, so all this stuff will not be used. They will have to start over.
the issue is there have been no updates since October. I really think whoever was working on it stopped. They managed to crack one layer of the communications protocol and then everything stalled.
I’m hoping an android framework could help in cracking it–as there are many more people with android hacking skills.
In Virginia they do - it’s the law.
We’re hoping the APS for OmniPod is not only introduced, but “stable” by the time Liam starts K (2 years). Here’s hoping!