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Suggestions for preparing for college

Discussion in 'Parents of Children with Type 1' started by MomofSweetOne, Aug 24, 2018.

  1. MomofSweetOne

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    I dropped my daughter off last week. It seems like yesterday, eight years ago that I was in tears learning the ropes of management and utterly overwhelmed with the task of having her ready to take it on in just a few years, but here we are. Before I forget, I wanted to post my thoughts of what helped or what we should have done better in preparation.

    1) Start the accommodations requests early. We and our endo were so focused on management that we mostly overlooked the need for prepare her for the legal aspects, plus she'd never been involved in 504 meetings, so this was completely new. She submitted her requests, which were completely pulled from the College Diabetes Network and ADA websites, in July. The week before school started, she received back a list of what the school was giving her for accommodations. It fit an LD diagnosis, not T1D. They hadn't used what we/endo had submitted. It took a lot of time and stress to try to get it straightened out. It would have been better if we had more time to get it straightened out.

    The other thing I was unprepared for is that colleges won't deal with parents, so she was on her own negotiating. (A friend with an older daughter with a chronic illness told me that what they learned to do was link phone calls, and if her daughter just announced mom was on the phone and allowed to talk, the school couldn't argue.) At one point, my daughter felt caught between the administrator saying that allowed absences for medical needs weren't necessary as the school didn't have an attendance policy and me saying individual profs might have attendance policies and that without it in writing, she had no legal protection if needed. During an orientation meeting, a reference was made to something that was 100% attendance expected, no exceptions. She turned and looked at me. Yesterday she told me at least one of her profs has an attendance policy and if homework is not on his desk at the start of class, it's an automatic 0. She met with him after class to go over her accommodations.

    2) Train from the very beginning about ketones and use blood ketone meters. The grandson of family friends died of T1D during an illness during college, so from the beginning, my daughter was trained from dx on that "I feel nauseaous" or "I feel sick to my stomach" was going to be a ketone test. By the last two years, she was reporting her ketones levels at the same time as telling me she didn't feel well. I'm glad it's ingrained into her that they need tested because I know they can be easily forgotten. As far as blood ketone meters, they test in real time and studies have shown that the kids are more compliant about blood than urine.

    3) The plastic dresser thingies make great packing for D supplies and then they don't have to be unpacked at all. They're a bit hard to pack around in the car, but worth it.

    4) If they let you, pack the D supplies yourself. My daughter was working away from home over the summer and home for about 22 hours per week, so I started getting them ready to go. She was thrilled, as getting them packed had been stressing her, but I came to realize how much it was relieving my stress to know that everything she could possibly need was in those drawers, even organized by expiration date. When I arrived home and found she'd left a ketone meter behind, I didn't stress because I knew I'd packed the back-up meter so she was covered.

    5) Get the new premixed Glucagon when the FDA approves it. We have a practice glucagon kit (a nurse/doctor has to order it; it's in a white case), and watching her RD/RA pull the plunger completely out of the syringe when drawing back out was not very reassuring. But I don't really expect them to need it, and we stressed calling 911 first before attempting it. Still, as soon as the new one is approved, I'll be ordering it for her to have.

    6) Ask about mailrooms. My daughter gets texts when packages arrive, but things that arrive by USPS may end up sitting downtown over the weekend, so time-sensitive things have to go by UPS or FedEx.

    7) Type 1 University. http://type1university.com/ We took all the classes together when my daughter was 12, but I've offered to pay for her to retake them as a brush-up if she'd like. She could even do them as a group with others. Another student had already spotted her Dexcom at orientation.

    8) Insulin needs may not do what you expect them to. My daughter was coming off the high activity level of camp life, followed by two days of car travel, so my expectation was that she was going to need significantly more insulin. Wrong. She needed 20% less; her cgm said she was low 20% of the time before we got our brains wrapped around that one. Now, a week in, she seems to be settling in to the 120% that I'd expected.

    9) Continue to carry the weight of dealing with the companies while they adjust to college life and learn time management. I spent an hour on the phone yesterday, mostly Dexcom (does anyone else think their hold music is torture?) but also Tandem and our insurance company

    10) Let yourself grieve. For me, I was surprised at the many levels of grief that came out about diabetes in the weeks leading up to her departure. I probably should have seen a counselor over the years, but I really didn't know how much I'd suppressed. Having her leave wasn't nearly as hard as knowing she had to take D with her.
     
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  2. rgcainmd

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    Thank you, thank you, thank you, for this excellent list of suggestions!
     
  3. MomofSweetOne

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    I thought of some more.

    11) Make sure they know the difference between routine appointments and urgent appointments and scheduling. My daughter had scheduled her own endo appointments this past year, but it hadn't occurred to me that she didn't know the difference between scheduling routine exams far in advance and urgent appointments. She thought she could just ask for an appointment after she gets out of class for the day. Also stress that staph infections top everything, so that they don't go sepsis!

    12) Schedule an appointment with an in-town doctor and go over the case history before classes start. We chose to continue with the same endo here with appointments during breaks, but we started the morning of move-in with a local dr/np who she'll go to if she needs anything while there. The school nurse recommended it, as opposed to using a walk-in clinic, given her history of T1D, hashimoto's, and developing an reaction to Humalog 4.5 years in that presented with multiple staph infections. This way they already have all that info from both of us when she isn't sick...and HIPAA forms are already signed and the knowledge that involving me is important is established.

    13) If the school is a long way away, fly home so that it doesn't feel so far away. ;) It helped me to know that I could be there within hours if she were to be hospitalized.

    14) Drip-drop is a space-efficient sick day supply. https://www.amazon.com/Drip-Drop-Hy...&sr=8-6&keywords=drip+drop+electrolyte+powder

    15) Save your insulin coolers and ice packs for transporting the insulin and keeping it cold while getting the dorm frig temperature adjusted. I think it took my daughter 24+ hours to feel like the temperature was stable and safe after plugging in the frig. In the meantime, the insulin stayed in the cooler. We swapped out ice packs as needed. If we hadn't left it in the cooler instead of the motel frig, her supply would have been frozen enroute. And because she's at a small school, we actually negotiated that her three month supply resides in the nurse's frig with its more stable temperatures rather than in a small dorm frig. She's keeping 1-2 vials in her room and restocking as necessary.

    16) If they're going out of state, check with your insurance about how that is handled. In our case, I was told it is important that the dr. office mark the state on the insurance form when it is filed; otherwise it will be considered as out-of-network with its separate deductible and lower co-insurance.

    17) Stockpile as many supplies as you can in the year or so beforehand. The buffer is nice. I kept some supplies here at home so that she wouldn't have to pack them at Christmas.
     
    Last edited: Aug 24, 2018
    rgcainmd likes this.
  4. Christopher

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    If this post isn't a candidate for a Stickie, I don't know what is!!

    You might also want to consider posting this in the Parents of College Kids section, also.
     
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  5. MomofSweetOne

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    18) Make sure that they know to not tell the pump company to send a pump replacement without a signature required. We got really lucky that when the UPS delivery person gave her pump marked "urgent delivery" to a random university employee when the mailroom was closed that the person tracked her down. She wasn't sure how a signature required worked and whether it would require her to be there to sign for it, so she thought it was better to not hassle with it. I guess I'd never discussed the times I'd read about supplies going missing off porches, etc. with her.
     
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