FUDiabetes

Working with the school nurse

Hi,

My 7 year old was recently diagnosed this year and is on the Dexcom G6 and Omnipod. I’m struggling to find a balance with the school nurse at our parochial school and looking for advice. Here are a few examples:

  • The school nurse makes my daughter check in with her 6-8 times during the 6-hour school day and interrupts her in class constantly. I shared the G6 data feed with her, set up the alarms, and I explained how that should relieve the need for constant on-person checks, but nothing has changed.

  • When I ask the nurse to give my daughter space, she threatens to call my endo (who has now asked her to stop calling).

  • I am still working with our endo to tweak carb ratios (our basal rates and correction factors are pretty good right now), so occasionally the numbers climb. When that happens, the nurse goes into class and forces my daughter to drink multiple bottles of water. Our endo has advised that this is unnecessary.

I’ve been very explicit that classes should not be interrupted unless the G6 alarm goes off, my daughter exhibits symptoms, or asks for help. My nurse educator has written very detailed school orders and management plans. Yet I still can’t get the nurse to change behavior.

It’s at the point where my daughter cries herself to sleep at night because she’s so overwhelmed by the constant influence of diabetes in her day as a result of the nurse’s behavior. She used to love school and now begs not to go. By the end of February vacation, the crying had stopped and my daughter’s confidence was returning, but when school resumed, she was crushed again.

Any suggestions would be appreciated. Thanks in advance.

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Hi, @Momofm, and firstly welcome to FUD. I’m glad you’re here. Second off, I’m so sorry that you and your daughter are going through this (diabetes is tough enough on its own, let alone with a school nurse not allowing your daughter to catch a break).

I’m not a parent so I can’t testify to dealing with others managing my child’s care, but I’ve been that child myself and I can completely understand how upset and frustrated your daughter must be. I’m sure other FUD’ers have some solid advice on this.

Have you been in contact with the school administration regarding the nurses’ inflexibility? And it sounds like your endo and you have a good enough relationship that he/she can be that crutch as well as advocate on your and your daughter’s behalf?

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What a horrible situation for you and your daughter!

You say you’ve “been very explicit,” but with who? Just the nurse? I might speak with the nurse’s superior. If she won’t listen to the parent, the endo, or the nurse educator, perhaps she’ll listen to the person who pays her.

Oh, and welcome to the list! I’m not a parent, and I’m not in your country, but others here have experience dealing with school nurses.

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Welcome @Momofm, I am glad you have found the resources around here helpful. I am even more excited you have found an outlet to ask these kind of questions, because this is incredibly frustrating.

I have had to deal with our school on a number of occasions, however never for anything as serious as this. Personally I would be in the principal’s office today, explaining how this staff member is hurting my child and asking for immediate remedy.

If that didn’t stop the behavior, then I would try to make the nurse have no accountability or I would be switching schools. (I realize this isn’t always possible).

If you currently are at, or end up at a school that receives any form of federal funding, you should get your daughter a 504 which can help you manage school issues, since that carries the weight of federal law.

Finally, when my son was diagnosed (12), he was able to manage his diabetes by texting with us and administering his own insulin. Is there any way you can remove the nurse by having your daughter text you or your husband to agree on a dose and have her deliver her own doses with no school oversight? If so, you should be able to get the nurse out of the loop. One of the things in our 504 is unlimited access to his phone and the ability to text his parents.

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Welcome @Momofm. I am sorry that you are going through this. We are parents to Liam, 5 years old, who was diagnosed at 2, but he doesn’t start school until this coming year. Our plan is to meet and create a 504 plan for him which dictates what will and won’t be done. Being that your daughter is in a parochial (private) school; however, that may not receive federal funding, they may not have a requirement for 504 plans as public schools do. The behavior of the nurse is unacceptable at any level; however, and I would certainly be asserting my authority to the Nurse and anyone else who had a problem respecting my wishes.

Nurses should NOT have access to the Endo team and even if they did, so what? What are they going to say to the Endo? The endo and the nurse work for who? You. Our Endo listens to our concerns and asks us if we have any questions, but as Liam’s parents, WE dictate how we manage his disease. The Endo team is there to help us through the disease with complications, discuss new things we may not be aware of over the horizon for D-Care, and to write prescriptions. No Endo will ever make me tremble in fear…I pay them, not the other way around. So, the threat from the Nurse is just shallow.

The rules in your school probably don’t apply; however, because Private schools don’t have the same mandates as publicly funded schools do. If it continued, I would certainly consider moving schools or going to public schools. Our oldest son started out in a very expensive private school and we found the education to actually be worse (he was very intelligent, but they refused to teach to his level…he was stuck being bored in class and sleeping because he already knew everything they were teaching. Even after he skipped ahead a grade, he was still bored. Public school has been a blessing for our kids.)

Anyway, as a parent of another child with D, I empathize and sympathize with your current struggles and we’re here to help in any way that we can. Liam is using the G5 and the Omnipod as well.

Welcome!

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@Momofm I would suggest that you get the schools Principle in on the conversation. Ask what the protocol is that the nurse is following, and is that protocol sanctioned by any medical organization. If she cannot produce the protocol, than the nurse is operating outside the purview of medical advice and interfering with the medical decisions of you endo.

I would hope that with the school principle in this conversation, they would see the potential for the school to be held liable for interfering in the medical care of your child. I have had my unfair share of arguments with school nurses when I was in school, so I do understand what you are going through.

If this does not work, then my next idea is more extreme. If the nurse is interfering with your child’s care, then go after the nurses license. Do whatever it takes to protect your child first.

When you meet with the principle and nurse, do point out that forcing your child to drink multiple bottles of water is not an approved method for controlling blood sugar, and may lead to over hydration. Over hydration is dangerous to your child.

After all of this, if you have not reached a satisfactory resolution, call your local police department and charge the nurse with interfering with the medical care of your child, and working against the instructions of your endo. Make sure your endo is onboard with this one. Having your endo willing to testify to the fact that this nurse is not complying with his/her instructions will make it much easier to get this nurse out of the medical field.

I know this may sound harsh, but you have to put your child’s best interest first.

I wish you luck with this battle.

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I once went even further when there was a problem with a teacher and my child…I went right to the superintendent…who is even higher up in the chain of command than the Principal. I was amazed at how quickly my problem was resolved when I did that…fast courteous communication and the problem was fixed in no time flat.

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“Parochial,” as in a tuition-based private (Catholic) school? I know they can be authoritarian too (I went to one) but still, it’s a different situation from a public school where you’re pretty much at the mercy of the school district. If this nurse is making it into a question of having to remove your child and find placement elsewhere, the administration should certainly be motivated to bring appropriate pressure to bear. This is not the kind of educational atmosphere people are going to be willing to pay for.

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Hi all,

Thanks so much for your quick and thoughtful replies. So much of this new diagnosis confuses to the point where I question my own instincts, and I appreciate having this community to help think through situations. This is my first post, but I’ve been sifting through old threads for months!

I think you are all correct that it’s time for another meeting with the nurse and school administration and an updated School Mangement Plan to establish the procedures that are best for my daughter. I appreciate your help!

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As we head into the end of school/summer season, you might want to look to see if there is a T1 day or sleep away camp for your daughter. My son got really depressed a few months after diagnosis and the camp that summer really pulled him out of it, when he realized he wasn’t alone.

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I’m so sorry for all of this. That’s a lot and you are clearly handling it VERY gracefully! I’m so sorry your daughter is experiencing this stress from the school on top of a very challenging transition.

The “parochial” part caught my eye, as it seems to have caught others’, as well. If this is a Catholic school, and if the principal is not intervening on your behalf, I recommend involving the priest. I won’t go down the rabbit hole of retelling the whole ridiculous story, but when my Catholic elementary school was acting very, very irresponsibly and the principal was choosing to stand behind the misbehaving teacher, my parents let the principal know that they’d be hearing from our attorney. (We didn’t have an attorney, but that doesn’t matter.) When the priest caught wind of that, he told the principal to stand down and make things go away because they didn’t want to deal with a lawsuit.

Hopefully you don’t have to go to that level in the interest of keeping the peace on what necessarily has to be a collaborative relationship…but clearly the nurse is either (1) on a power trip or (2) is freaking out about her liability if anything goes awry while the child is under her watch. The nurse is clearly currently blind to the basic idea of “do no harm” to your child as far as the mental and emotional distress she is inflicting…while being overzealous on the physical care.

I wish you the best of luck and fortitude in handling this enmeshed situation as successfully as possible. I sure hope your daughter’s stress and emotions will be properly valued by the school going forward. (You’re doing AWESOME, by the way. And welcome to FUD. We’re happy you are here.)

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I totally understand this, too. In my own care (I’ve been T1D for 14 years, dx at age 21), my gut has always been my best guide. Learn from others, read books, pay attention…and then with all of that, listen to your gut. Every time my care has gotten off track in a significant way, it’s because I went with advice from doctors or nurses that conflicted with what my experience and my gut told me.

You will be the best expert at this in time. I wish someone had told me to stick to my gut earlier in my journey.

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This is exactly why we created FUD. All of us felt this way once and we didn’t have an outlet that we thought matched our views (aka, we weren’t interetested in pity parties, only knowledge, community and leaning on one another at times.) The folks in this community will give you their personal experiences and recognize it’s just that…we all have them. As a community member, we take in all those experiences and move in the direction that’s right for us based on those experiences, our own research and gut instinct.

FUD is all about helping people live UNLIMITED lives…but the first part to being able to do that is realizing that UNLIMITED IS POSSIBLE. FUD was created for that purpose.

We are here whenever and for whatever you may need! There are SO many great minds in this community.

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Don’t forget to let the school know that mental health/depression is an especially big problem for Type 1 diabetics and that may just as important, or perhaps a bit more important than keeping them in the perfect range all the time. Of course if you are at a blood sugar of 35 multiple times a day that is a problem, but burnout is also a big problem, and your daughters mental health is a key part of that.

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Would any of you with T1D children be willing to share what diabetes care looks like for them at school? What ages correlate to which levels of independence? How involved are nurses or teachers in daily care at their schools? How do parents help with management from work or home?

I realize each student will be different and management will be personal to the student’s abilities and needs. Nevertheless, I’m curious what the range of independence is.

There’s some great perspectives on self management in children here: What is the RIGHT age (self-management)

When I was in school, diabetes management was different than now because of cgm developments. I had I would say minimal nurse involvement. I would go once a day before lunch to test my blood sugar, and I believe she helped me calculate how much insulin to give myself certain days. Though most days my parents left a note in my lunchbox with how many carbs to put into my pump when I got one (before when I was MDI I think we just did a lot of guesswork). At a certain point I just used the nurse’s station to hold all my diabetes supplies and managed my care on my own (not sure on the age range when this happened).

A girl I babysat for had a phone connected to her cgm. Her mom followed her cgm data and would text her with diabetes things to do throughout the day. That seemed to work pretty well for them, and I think some parents here use a similar system that I’m sure they can talk more on?

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My son was diagnosed aged 12, so at diagnosis he was pretty self sufficient.

As far as what our interaction with the school looks like. The junior high nurse wanted him to be completely independent, and was happy that was my son’s goal as well. There are some kids who need nursing help all the way to high school, but we certainly aren’t there.

As to what the care looked like at 12 - we packed his lunch every day with a note that included the total carbs. My son would text us his bg in the class period prior to lunch (Pre-CGM), we would calculate the correction dose and food dose, taking into account exercise expected and wait for my son to text us his calculation, if it was different than ours we would have a short call or text session at the end of the class before lunch. This was a bit dependent on how high he was. If he needed a big pre-bolus he would inject in the middle of class, but mostly he injected at the start of lunch.

If he went low at school he could text us when he corrected.

That is what it looked like prior to CGM. WIth CGM we communicated less, although we frequently had to ask him to reset his phone because the G5 liked to drop the connection with his iphone and the reset usually worked to get us data. At 13 it looked like above, but now he had a pump so giving the insulin was easier and so we would only consult on the lunch dosing for the most part.

At high school the school nurse really just lets us know when the diabetes stash we keep at school has something expired since they can’t let him use anything that has expired. Other than that, no interaction other than a once a year check in on if his care plan has changed.

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Side note on 504’s, our 504 allows him to text his parents and medical team at any time, he can’t be separated from his phone, he is allowed to test and treat at any place in the school, his teachers are not allowed to ask him to leave a classroom to treat unless there is a safety concern.

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Thanks again for your replies! I worked with our doctor to set up a medical management plan that provides for my daughter to do more self-care and have more independence in a safe way. Your suggestions were great and I checked out the past thread as well. Looking forward to seeing how it goes next week!
Have a great weekend everyone.

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Hi Momofm,
My 9 yr old son was diagnosed on August 28, 2017 at the age of 8 (first day of school mind you). We missed the first week of school as he and I began this new journey in his life. Before he returned, I reached out to the principal, who in turn contacted the school nurse, his teacher, and two of the most wonderful ladies I know (Liz, a reading specialist and Miss D, the guidance counselor). His team are wonderful. Liz and Miss D volunteered 2yrs before when they had two kids (one with T1D and the other T2D) entered the school. They out of all of the teachers volunteered for training and became CDEs. So, when my son was diagnosed they were there ready to go. We discussed the Diabetes Management Plan (which spells out how to manage lows/highs, when to call the parents, etc.) From day one, my son has a morning snack which started out at 9:30 am due to his lows around that time, so at that time his BS was checked B4 the snack and we covered both BS/snack,
but we pushed back snack 30mins to 10:00 am, because we wanted to make sure his BS was being checked Q3 hours (every 3 hours) then we only cover his snack because we have found that he drops really b4 lunch. His team alternates who will cover lunch and snack. So during the snack and lunch times he would go to their office or classroom and check his BS,have his snack, and bolus all under supervision. Because he is a car rider and is picked up by my father-in-law, his BS was checked around 2:15pm to make sure he was not too low before leaving school and they would let his grand dad know and would send me a text. I receive a call EVERY day during the morning and after lunch. Initially this school year we continued with the same schedule until after Christmas break. He still has the morning snack, but he checks his BS in the classroom and he calls me b4 with the BS. If the BS is too low or if it is well above 400, he will report to either Liz or Miss D. Because lunch time is when he has to bolus for BS and carbs, he will log his meal (he has a notebook where he logs the carbs for everything that he eats) and BS before, he will then go to the office or classroom with his team and they make sure his totals are correct and he boluses. That first there was more supervision, but he was only bothered in class (or removed from class) maybe 3 times, and more if he alarmed for lows or highs. This year is a little better he does his snack check himself with his teacher, she will log his BS and if a problem will send him to the team, other than that lunch is the only time he has to be removed from class. His is still in the honeymoon phase of diabetes, but we are much more comfortable now.

Also, in our plan, my endo indicated that adjustments can be made by mom if I deem it. Because there was a point early on when one of the teacher’s did not feel comfortable about something I told her and contacted the School Nurse who was at another school that day, a big mess ensued. I was ready to take him out then because I concerned that she was not competent enough, but we spoke and I had his endo to contact the school nurse who let him know that I am very competent of the things that we are doing with his diabetes and that he is comfortable with my decisioning because he knows that if I am not sure or have questions that I am going to contact the office no matter what.
It is almost harassment what the nurse is doing to your daughter. I am sure that this behavior only heightens your daughter’s anxiety which will affect her BSs. It sounds to me that this nurse is not comfortable in her position or skills. I would suggest speaking with the Principal/Head Master/HeadMistress about your concerns. This cannot be good for your child’s mental health either. She should not be checking her BSs less than every 2 1/2 hours, probably more ideally every 3 hours. She also must understand that she may alarm w/i an 1 hr after lunch.
I must say that we are very Blessed to have the team of people that we have helping with my son. We had a few hiccups early on, but it is so much better now. He is now in the 4th grade. I have no idea what I am going to do when he goes to middle school.

I pray that things will get better for you and child. But, I would seriously have a meeting with Administration and the nurse.

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