Devilish Doctor's Orders

To whom this may concern,
I'm Jamariel, a senior in high school who was diagnosed with type 1 diabetes about 10 months ago. Since the diagnosis, I have been doing fairly well with my blood sugars. Because I'm honeymooning so strongly and I'm very active, I don't have to bolus for meals, therefore I have no insulin to carb ratio, although I do know how to count carbs and bolus accordingly. I'm only on 22 units of Lantus nightly and a sliding scale for correction of highs (1 unit for BG > 200-299, 2 units for BG > 300-399, and so on). I dose my insulin with vials and syringes. I'm only required to check my BG before and after meals and whenever I feel necessary.
That being said, I'm now coming out of my honeymoon and I'm seeing steadily rising BGs, especially after lunch. What would be 89 after lunch is now 257 after lunch. My average BG went from 87 to 153. My A1c went from 4.9% to 6.6%. Needless to say, it's time to start bolusing. At home, I'm fine when I can bolus at my discretion. At school however, it's an entirely different story.


At school, I'll eat lunch or breakfast and go high. I understand that of course my BG will rise after eating and that I can't immediately correct what might seem like a high. However, when my BG has been 200+ for 4 hours after breakfast, it's clear that I need to correct. This is when I normally go down to the clinic to do so.
Recently, because of my string of highs, I've been needing to go to the clinic hours after each meal to correct, probably I have no carb ratio to pre-bolus with to prevent highs. However, according to my nurse, who can only follow my doctor's orders, she can only allow me to dose insulin when my BG is high before lunch (which NEVER happens to me because I tend not to eat breakfast). The only time my BG is high is after a meal. Her interpretation of my doctor's orders is that she can only give me pre-meal insulin when my BG is high. The orders clearly state that treatment of a BG is allowed when BG < 70 or BG> 200, both before meals and for suspected highs/lows. I repeat, SUSPECTED HIGHS/LOWS. If I ate 4 hours ago, and my BG is high at 250, is it unreasonable to ask to take 1 unit of Humalog to bring it down?


This refusal to allow me to correct my high sugars has resulted in either one of two scenarios: Either I end up back in class irritable, asleep, itchy and hyperglycemic or I waste time out of class down in the clinic desperately drinking cup of water after cup of water to bring my BG down. Neither works. My only alternative is to either carry around my own insulin and syringes (which is most likely illegal, and therefore not an option until I clear it with my mom and doctor) or to continue running in circles when I go to the clinic.
This is ruining my academics, not in all classes, but particularly in my 1st period and 4th period (classes after I have breakfast and lunch, respectively). These classes are honors calculus and economics. You know something is seriously wrong when a lifelong A-student suddenly ends up with a 31% on a progress report. I can't keep allowing the school to allow my highs to go unchecked just to keep their behinds clear of any liability. I might add that because of highs and malaise thereof, I have missed quite a few days of school in the past month.


Furthermore, my relationship with the nurse is ruined. It went from cheerful and cordial to snippy and awkward. I'm normally a respectful young man, but when I come down to the clinic day after day, high after high only to be told I can either bloat myself with water or go back to class, after so long, I'll lose patience. (This is the second time I've lost patience and gotten sarcastic and walked out of the clinic, only to be summoned back down later and scolded and lectured by diabetes-ignorant school administrators who are naturally inclined to take the nurse's side because she's a) a nurse and b) an adult. I can understand that they only want to help, but their efforts are in vain. In their opinion, I feel like they believe that these highs are something I'm bringing upon myself by not eating properly or not checking my sugars or not taking my insulin, none of which is the case. Not matter how I try to articulate the situation, it goes in one ear and out the other.)


I might add that I'm now 18 and no longer live with my mom, who was and is (although no longer to the same extent) my biggest advocate when it comes to the school and dealing with adjusting to my diabetes.
What should I do?
I need to know:
a) how long do I need to wait after eating to correct the highs that I have come to expect?
b) How to explain to the nurse that I believe that her interpretation of my doctor's orders might be mistaken?
c) How do I educate my school's administration about my disease? (most have relatives who suffered from type 2 diabetes, and thereby automatically assume that I have the same type and same treatment).
d) What do I need to include in my 504 plan? (I'd like to ensure that my class rank won't be put in jeopardy because of missing days because of illness) and how do I justify it?
If you've read this far, I apologize for the extremely long post! SORRY ^_^

Additional Links added by the TuDiabetes Administration

Resources on 504 Plans

Group for Diabetes & School & Civil Rights

Video with Mike McCabe on the Legal Side of Diabetes and School

Jay:

You need to get a 504 plan, and for that you will need a doctors statement. Here is what needs to happen. First your mom, dad or guardian needs to call the school office immediately and request a 504 plan conference. If you are 18, in most schools (I think all) you can demand that a 504 plan conference be called. Please do so immediately.

All diabetics in K-12 need a 504 hearing. it will involve the nurse, school administration and some if not all of your teachers. You will want a detailed letter from your doctor and please ask them for for reasonable accommodations. Ask for time at the nurse to take insulin, extra bathroom breaks if you are high, the ability to carry water in class, the ability to eat in class if low, and most important the ability to be released form class to test, take insulin, or to recover from a low if needed.

Jay this is extremely important, what will happen is those assembled will write out a plan. Yes the nurse may make reasonable suggestions, same with teachers, but you are not obligated to sign a plan until you and your parent or guardian are satisfied. Knowing the transportation issue ■■■ accommodation for gettign to school.

Please ask for the meeting immediately and schedule it in two weeks. However, do not mess with them. I knwo you wont be ask for what you need not want, and do not take advantage of what they give you. So if they give you an exception for being late, work hard ot be on time. beating the 504 plan should be your goal, because once established these plans can be changed on the fly if conditions change and all parties agree. Obviously if they know you are working hard to full fill your obligation
they will be more apt to give you an amendment.

Now so you knwo the nurse is at fault here for not calling a 504 conference the minute she knew you had diabetes, any teacher, administrator or school employee who knwo youa re an insulin dependent diabetic is also at fault. but so are your parents. so fault is not a big deal, but getting it done and i mean right now is important.

Remember you are entitled to one and you mus be given one the minute it is requested. Ok, so get in touch as you get deeper in. This is a federal law. so no is not an answer.

Jay:

Here are two sites in this web community that discuss 504 plans. There are about 50 if you look. Now one thing I do not suggest is following the ADA plan only. Yes what the AAD suggests is legal, but it is a bit out there unless you run into issues. Jay you need a solution not a legal win. So dont play hard ball call the meeting and get it solved, dont push for things you do nto need in order to get things you may not need. Please get in tough if i can help.

Rick

https://forum.tudiabetes.org/topics/california-judge-rules-only?commentId=583967%3AComment%3A1358388

http://www.tudiabetes.org/profiles/blogs/504-plans-and-the-start-of-school

I second the suggestion to get a 504. Also you need to get your insulin orders for school revised to meet your current situation if it has changed. The nurse can only administer what the Dr’s orders allows. Also many states allow for students to self administer insulin at school which would completely take the nurse out of the equation. But again you would need to provide Dr’s orders for self administration in order for this to happen.

You need to bolus before you eat is standard practice among many people with diabetes. I think that it's pretty common medical practice as well, she should know that but, if she's a school nurse, your plan should trump her. She's just there to help you. The Administration also need to know that you are the boss. I agree with not missing days due to illness. I haven't missed a day at work due to diabetes like ever. What are your parents doing in this? If it were my kid, I'd be up in the grill of the school. I have a 14 year-old and the school is pretty cool but we are in touch with them about things. If you're a senior and 18, you may be able to make the call yourself although I didn't turn 18 until freshman year of college. When I did MDI, I had an LV bag I'd carry my gear in and just shoot up whereever and it worked ok. I like my pump better but that's what I'd do with shots today. Bring it along, test and shoot as needed. The nurse should not be in charge. I don't see a reason for her to be a part of it, unless you feel like you need her help.

Hi Jay - I am glad you posted this because I was diagnosed with type 1 diabetes my senior year of high school as well and can relate. I was a valedictorian and also varsity level athlete, but before my diagnosis, I was falling asleep in class after lunch with unknown high BS. Once I was diagnosed, I started to use an insulin pen (looks like a sharpie marker to most people). I have always managed it myself, I never actually had to go to the nurse, maybe because people didn't know? Not really sure. Probably helped my mom was a teacher in the school district. Either way, I would have acted the same way as you, irritable, especially if I had unstable BS. I do not know the specific rules at schools, but your education shouldn't suffer because of inability to manage your own body! Insulin Pens are much more discrete and easily used, I use them at dinner tables without anyone even noticing! Best of luck! Always up to answer any other questions if you message me, but heading off to college will also be a new challenge, but I got by just fine and I am sure you will as well!

hey Jay
I can only agree with the other answers above.
I think i am about the same age as you (18) last year in what is highschool in the US, was dxd 9.5 yrs ago, and here nobody gives a shit about my D, which is great. i just do my own therapy as i was taught, bolus before meals, test whenever and wherever i want, eat when i am low correct when i am high. most teachers dont even notice if i do so in class, if they notice i just say im diabetic and thats it.
Living in switzerland i dont really understand all this stuff about 504 plans, but it sounds like the right thing to do for you. i really think that you should be granted the allowance to inject yourself without the nurse's ok, and i actually dont see why carrying around syringes is illegal.
i personally have a pump, it makes things much more easier, i personally can also recommend pens, as they are easier to handle and you dont look like a drug addict everytime you pull that insulin out of the vial ;)
hope we all could help, wishing you luck!
SC

First, I would like to congratulate you for taking on such a responsible, proactive role in caring for your diabetes! My son is a sophomore and although we do have orders in place he is 100% responsible for his diabetes care in school, he has supplies at the nurse in case he has to change out his pump, and although the nurse is a lovely person Jacob is far more knowledgeable about diabetes. As long as your parents and the nurse talk I think at your age you should run your show, a 504 shouldn't be necessary. Our school system never thought we needed one, but all schools are different. I would get seem by your endo teem asap to work with you on setting up insulin to carb rations and a correction factor. correcting after the fact is not the best approach. They will help you put this in place when you are more comfortable with this system than you can fine tune your 'settings' when you feel comfortable we do this gradually based on trends. In anycase, I think you are a wonderful young man, and with your brains and heart you will go very far. Having this take charge attitude about your D is huge, you are not a victim you can control this but at this stage of the game having a good back up team ( probably not including the school nurse) is vital. This is an excellent site for support and information. many blessings, amy

In much of the US, students are prohibited from taking medications @ school w/o input from the nurse or administrator or teacher or some sort of authority figure. In situations with diabetes, it can be useful for a school to have a plan, although perhaps this makes more sense with younger children who may not be able to figure boluses or test or correct or treat or whatever, (although a lot of kids seem pretty sharp from the accounts of their parents...). A 504 plan puts the plan in writing. It seems like the OP is very capable of doing things but is hamstrung by a doctor's order which seems to have gotten into the school's hands. I would get a new order immediately and, if the doctor isn't accomodating, fire them and find one who is.

It would be interesting to just bail on the nurse and bring your own gear and handle things but many schools have really strict rules and you can risk suspension for breaking those sort of rules.

Thanks for the info, acidrock, it seems like your schools are far more restricting. I found it very helpful just to inform my friends about it, they know what to do if i pass out, and my sports teacher knows that i am diabetic, too.
I hope you get the permission to take your medications, otherwise, as AR said, fire your doctor.
You know best what is the best for you, Jay, so fight for it!
SC

"It gets better". After getting out of high school I had a lot more flexibility with treatment decisions during the day, and I really made many huge improvements through my college years. That was like 30 years ago now, but still, it does get better when you can actually move the decisions into your hands.

Hi Jay

I don't know anything about 504 plans and school politics, but you've gotten some excellent advice from people who do.It sounds like some schools allow for students to self manage and some don't but it would certainly be easier if you could (and a pen, and maybe eventually a pump sounds like a great idea!). Since you're 18 and living on your own, that should certainly be a possibility!

It sounds like you are, as you say, ready to start bolusing before meals to reduce spiking (and the need for correction) after meals (at least most of the time!). That will greatly reduce your anxiety level and allow you to get into a routine and focus on what you want, your classes and school activities. As for correcting after a meal, some of us go ahead and correct if we're high at the two hour test and some of us wait to say three when the insulin is mostly gone. I wouldn't wait any longer than that. What's important is to keep good records of corrections and then start to work out your ISF - the number of points that one unit of insulin drops your blood sugar - that way you can safely correct. I highly recommend the book Using Insulin by John Walsh if you haven't already read it.

You sound like a very smart and sensitive young man who is being proactive in your own care and I'm glad you joined us here. I appreciate your attempts to stay respectful to school staff despite their making your life difficult! It took me until the age of 40 to learn that I won more battles when I came off as a confident and knowledgeable person or professional then when I got pissed off and stamped my feet. You are learning that lesson at age 18. Keep up the good work and let us know how it goes.

It really is very frustrating ><
And the ironic thing is that going to the clinic is now stressful to me. I feel like just walking down the stairs to the clinic and smelling that smell that lingers in the air is stressful enough to make by BG rise lol
But I've decided to just comply and docilely do as the nurse suggests (the mature thing to do, I suppose)until I can bring about a change. Until then, I refuse to stress about this. I will jog, play piano, play ps3 and do whatever else I have to to relax, but I will NOT stress :)

Yes sir! I'll tell my mom about this as soon as possible.

At this point, I don't feel that I'm ready for complete independence from the school nurse, as far as my diabetes goes. I feel that in order to ensure that my health remains intact and that I am able to maintain my academic footing that I need to be allowed the freedom to correct highs if they are a reasonable amount of time after my last meal. I understand that my school is afraid that I might bottom out because of the insulin, but I carry around a bottle of glucose tablets and at least 2 carb-rich snacks in my bookbag at all times. Furthermore, all of my teachers are aware of my condition and the majority of the students in my classes are as well. The most insulin I could see myself feasibly taking at this point is 2 units of Humalog. I know that its a risk, but I believe I am responsible enough to be tasked with minimizing it by myself.

The thing about that is that though I may be legally an adult, I recognize that the adults around me, including those who I may be less fond of, must be respected. By doing that (demanding to be the boss), I feel that I'd be overstepping my boundaries and that I'd be out of place as a young man. Although I feel that I am responsible enough to handle my own diabetes care (with the instruction of doctors, of course), I have to be patient. Acting rashly based on my feelings swill get me nowhere. I need to approach this logically, objectively and with a source of support, who is my mom.

Oh wow! That's almost my exact story now! Minus the athletic part lol (I quit cross-country after I started to have lows every hour.)
But yeah, I totally agree. My doctor and my mom are discussing getting me on an insulin pen now, but I don't see it happening anytime soon. For now, I'll just have to bear with this situation until we can arrive at a solution. Even though right about now, this situation IS the struggle -__-
Thank you Bram, for sharing your story with me and lending me your support. It's greatly appreciated ^_^

All you guys' input is really valuable, and it's definitely helping me a lot! Thank you for your help Swiss :)

Thank you so much, Ms. Amy! I definitely agree! I feel that I am responsible enough to take my D care into my own hands (following the doctor's instructions, of course). I just want the freedom to correct my postprandial highs so I can actually function in my classes again. But alas! Everything will work out as it should in the end, so no need to worry ^_^
Thank you kindly,
Jay :)

I can't help but agree :3
I'm not worried ^_^
Everything will end up fine. Maybe not my ideal solution, but it will be just fine.