Moving to the US with a D-Child - so many questions

Parenting a D-Child
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Dear community,

I have been reading quietly in this forum to prepare our move from Luxembourg to the US (Research Triangle area, NC) in August (for one year, to begin with). I’ve learned quite a bit (and I loved The “Parent Project” - absolutely amazing!!) Still, some questions remain, and I hope I may bother you with them.

Our daughter, now 11, then 12, has been diagnosed almost 10 years ago, and we have been using a pump from the beginning. She is now on a DANA RS pump+Dexcom G6 +AAPS, and we like it a lot ( we sleep at night !!). As it is a pump that is not available in the US, we’ll bring an extra pump and lots of supplies with us, also as much insulin as we are allowed to import. But ultimately, we’ll need to buy insulin and Dexcom supplies - may I ask, how does this work in the US? Do we absolutely need to see an endo at some point? I understand we might be able to buy insulin without a prescription (here, this is not possible)? We would prefer to continue to do online meetings with our endo here, they are comfortable with our use of AAPS, and we basically only check in to get prescriptions, send them data, and chat about latest technology developments.

For school, school sports and sports clubs: we saw that we have to fill in some health related forms; do you think it makes sense to get an additional note from our hospital saying that she is well controlled, can take care of herself, and may participate in all sports? I intend to prepare the Diabetes Medical Management Plan as well as the Section 504 Plan as provided by the ADA, I hope these are universally accepted? Unfortunately, we cannot discuss this with the school - we can only enrol once we are physically in the US, and we will know only then where exactly she will attend.

We would also be very happy to hear about any experiences and tips you might have for us - we are extremely excited about our stay, and hope very much that Covid-19 doesn’t get in the way!

Thanks a lot, and very best wishes from Luxembourg

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Hi @Mirjam! Nice to hear from you!

Since you have a doctor you are comfortable with and know, the only thing you really need here are prescriptions. You DO need a prescription for any of the rapid insulins (Humalog, NovoLog, Fiasp). You could get the slower old-fashioned insulin without a prescription, but you should not go that route. And you also need a prescription for the Dexcom.

Any doctor can write those prescriptions, it does NOT need to be an endo specifically. But because of your daughter’s age, perhaps the best bet would be to start with a regular pediatrician and explain your situation and see if they would be willing to write the prescriptions for you.

If they are not willing, you might need to find an endo and explain to them that you are doing your online meetings and explain the control you have and just explain that since you re in the U.S. for perhaps a limited or unknown time, that you would like to continue that management with your current doctor, and simply need the prescriptions for the Dexcom and the insulin. And particularly since you are using a pump that is not used in the U.S., I can 't imagine anyone would try to make you switch what you are doing. If they are not willing, look for a different endo or pediatrician, and try again. There are a lot of great doctors in the Triangle.

Are you paying for the insulin yourself, or will you have insurance? If you are paying for it yourself, there are a number of ways you can get insulin cheaper than the normal price. Discount cards and so forth. So don’t pay the full price without consulting with the knowledge here at FUD on those discounts.

If you do not have insurance, unfortunately for Dexcom there are no discounts. You can often buy sensors and transmitters from eBay for cheaper than the normal cost.

Her right to participate in sports is a protected right. She can NOT be prevented from participating in sports because of diabetes. And not only sports - any school activity like a field trip or band or chorus or any school groups, her right to participated is protected by the ADA. (As you referenced above, you already know about the ADA.)

A student could be prevented from participating in sports because of grades or discipline problems, but NOT diabetes.

However, most schools require a doctor’s physical to be allowed to participate, to identify any unknown health concerns. But after you get the physical, the doctor will sign-off on it and she can participate.

A note from your current doctor would not hurt. It would be good to get such a note, but it should not be required for her to participate.

I hope this is a start of an answer for you, but please feel free to ask if anything is not clear.

Happy to hear of your visit!

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Also Amazon, Costco and Craigslist. Costco has the most consistent price with their Cash Rx Program (CMPP). Amazon and Craigslist are regulated Rx products that are being resold by individuals (not entities) at market demand pricing (often illegally as Rx products are regulated in the US).

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Hi @Mirjam! I just wanted to say “hello” and applaud your questions and research!

My general impression of pediatric endos is that they might be more open-minded about using technology for great bg control than some of the endos for adults. My endo really just deals mostly with T2’s and he’s so not engaged in anything technology related. And moving to a tech area will probably also help with the quality of endo that you guys might find…if you end up needing one…

Good luck! I hope to be able to helpful in some way! Even if that’s just rooting you on!

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Don’t spend a lot of time prefilling the 504, the school is required to fill that out in a meeting with you after you request it. If you want examples a number of us would be happy to share. The basics are ensuring your daughter is allowed to self treat, ensure your daughter is allowed 100% access to communicate with you via her phone, ensure your daughter is given extra time during tests to self-treat and wait to come in range, ensure your daughter can postpone tests or other activities without penalty due to high/low blood sugar.

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Welcome! Hope your move to the US is smooth and that you enjoy your new home.

In order to get insulin for a kid, odds are you will need an endocrinologist. In theory, any doctor can prescribe insulin, but in practice, I am guessing no pediatricians will feel comfortable doing so. It is not possible to buy insulin without a prescription, except in emergencies from what I understand. However, our pediatric endo is now remote for all but the once-yearly tests for things like hypothyroid antibodies, so it is possible you could find an endocrinologist doing that.

You are welcome to get a note saying she can participate in sports, but our experience so far has been that our son is welcome to participate in any sports assuming he (or we) manage the diabetes.

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I think what you say is generally true, but I would at least try to find a GP that will write the US script based on an email or some other agreed communication from their Luxembourg doctor, it may be easier sailing without having to give up the relationship with their current team.

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In theory people shouldn’t be prevented from participating. I know the Parks and Rec camps here do not allow their camp staffers to provide medicine, which means kids with diabetes are functionally banned from these programs… So, it’s hit and miss and not every place knows what they’re legally required to do…

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The modern insulins require a prescription. It is possible to survive without a prescription because the old inferior insulins (Insulin R, Insulin NPH) can be obtained without prescription and relatively inexpensively from some pharmacies, notably at Wal-Mart.

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Thank you so much for your answers - this is all very helpful. @Eric, @TiaG and @bkh: Very good to know that there is the possibility to buy “old” insulin in an emergency without prescription, but we certainly do not plan to switch - there is no way we are giving up the quality of life our daughter and we have with a pump and the loop. We do have insurance, in fact, it is a requirement to get a visa - though we do have to pay everything ourselves first, and than ask for reimbursement, which is rather complicated, and it takes a long time. I did talk to our doctor shortly yesterday, she said she will call the endo in the US and explain our situation - I guess this is the best solution for us, given the need for prescription ( and in case of emergency, it is probably a good idea to have someone local who knows my daughter).
@Chris - thanks for the pointers on the 504! We have so much paperwork, happy to know I can skip that for now. It sounds as if American schools are more accommodating than ours, here she has no choice but to self-treat (once you enter secondary school, at age 11), she may eat and drink and use her equipment, but that’s it. It’s her job to ensure she can take tests, no exceptions there.
@TiaG - yes, this sounds like the situation we have found in all countries we have lived so far (Luxembourg, France, the Netherlands and Germany). The rights on paper do not necessarily translate into real life - we actually moved from Germany to Luxembourg because of this reason.

Again, thank you so much for all the answers, and the warm welcome!

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You will find that on average they are more accommodating than offering no help to an 11 year old (yikes), but it is very school dependent. For instance our school district has a nurse in every school, not every school has this. Some school districts are run very differently, but they all take the need to help the children within their care seriously due to the federal laws. I also PM’d you our middle school 504. It changed slightly when he went to high school.

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I am also happy to share our 504 for ES is requested.

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Thank you, this is extremely kind of you! Very useful, I think ours would probably look rather similar. It is very nice to hear that help for children who need it is taken so seriously.

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Thank you! If you don’t mind sharing, I would be very interested, as I see that you are also looping. I think Liam is a lot younger than my daughter, so it will look very different probably?

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Yes, your plan would be more closely aligned with @Chris’s sons 504 because he “self manages”. Liam has to have School Nurse assistance right now and that’s all encapsulated in the 504. Since your daughter is 12, she can do anything/everything all on her own I would think, once she’s learned them herself. She’ll probably not want to be getting up and leaving the classroom to visit the nurse everytime she needs to take some action. I’m happy to still share, but I used a lot of what Chris provided when building mine also!

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At her age, I think a good way to have it setup is to allow her to manage in the way she wants. If she wants to excuse herself from the room to inject or test BG, she should be allowed to do that. Or if she chooses to inject herself in the classroom, that should also be allowed.

The main thing is that the school policies are not getting in her way. They should simply allow her to be the decision-maker in her treatment.

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Yes, very good point Eric…I was thinking of being on the pump, but the vital part as Eric expressed is that SHE have the power to make any and all decisions for her diabetes management

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Indeed, this is the relevant point for us - that she can take treatment decisions without anyone interfering, while being allowed to eat/drink/etc when necessary. Here, she uses almost exclusively her smartwatch to control the pump, and I am almost ashamed to admit - no finger sticks at all, other than checking the Dexcom once a week…
For the first few weeks at school, language might also still be an issue. English is her fourth language, so she is not completely fluent yet, and I worry that there might be misunderstandings if a nurse or someone else would try to “help”.

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I guess we can forgive it then. lol. AMAZING. My x-wife spoke 5 languages…it’s incredible how Europeans value learning those skills…I wish America followed those practices.

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I. have heard Sams Club has similar discounted price, with membership.

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