{Diabetes at School} Following Protocols at School

by Leighann on March 18, 2013

Diabetes At School

Please remember that I never give medical advice. Ask your endocrinologist or pediatrician for advice about your own child. Make your own informed decisions for your own child.

I hear parent after parent say that they have not implemented a 504 plan for their child with type 1 diabetes at school because they haven’t had any issues yet and the school is cooperative.

I firmly believe that every child with type 1 diabetes needs a 504 plan in place NOW.

Seriously.

Go do it.

Don’t think your school will let you have one? Well, they don’t really have a choice. It’s the law. If your school receives even a dime of federal funding (for instance if they participate in the milk program), even if they are a private school, they must allow you one. Otherwise it’s discrimination.

I bring this up as a segue to talk about a mistake in school that almost killed a child last week.

You can read the news story: Mother: Daughter overdosed due to “negligent” school nurse

Basically, this child was given 70 units of insulin instead of 7 by the school nurse.

SEVENTY!

What I want to know is why this child’s blood sugar wasn’t checked when she started exhibiting these symptoms, why glucagon wasn’t given, and why 911 and an ambulance were not called…immediately.

We have a two page instruction sheet that all teachers, nurses, and substitutes are supposed to follow. This includes symptoms of lows and highs and treatments. It includes when glucagon should be used and 911 called.

A 504 may not prevent an accident like this potentially fatal one, but I feel like your child will get better care if everyone is on the same page and the school is held accountable for their actions.

I feel like there are several things that you can potentially do to minimize the possibility of this happening to your child.

1. Your child’s diabetes supplies should be kept separate from those of other children with diabetes. I know that when we were on multiple daily injections (MDI), the syringes we used only went up to 30 units. There is no way that she could have accidentally been given more than our syringes could hold. If your child can use the smaller syringes, don’t even have the larger syringes accessible.

2. If your child is on MDI, consider an insulin pen. For instance the NovoPen Junior administers in half units from 1 to 35 units. Yes, there is the potential to dose up to 35 units at a time, which is probably WAY more than any child would need, but at least you can look at the number of units before injecting. (See the NovoPen Jr. instruction manual.)

3. If your child uses an insulin pump, set the upper limit for boluses no higher than the largest dose you would typically give. I think we have ours set at 6 or 8 units. On the rare occasion that she needs more than that, I just give a second bolus.

Maximum bolus

The parent on the video (and I am in no way blaming her) said that this nurse has made mistakes before. My biggest piece of advice to any parent of a child with diabetes is to always trust your gut. Always.

I will give two examples.

1. When Q started kindergarten the regular nurse couldn’t be there the first three weeks of school. Because it was her first time at school, my plan was to go in at lunchtime the first few days just to make sure that Q felt comfortable with the nurse and that I felt comfortable with the nurse’s ability to take care of my child.

Let me tell you that I absolutely, 100% did not trust that nurse to adequately take care of my child. Part of it was gut feeling. Part of it was that she was very slow to add her carbs and had to do the math long hand. Part of it was that she would not do the injections the way I asked her to, despite demonstrating and explaining several times.

I ended up going in at lunch time every day until the regular nurse returned.

2. According to Q’s 504, I am to be notified if there is a substitute nurse. Ahead of time, if possible. Not every nurse knows how to work her insulin pump. If it’s a nurse we’ve had before I usually don’t come in. But if it’s a nurse we haven’t had before, I usually try to pop over at the end of lunch to make sure she got the right insulin.

(And I realize not every parent has a flexible schedule like this.)

One day there was a sub nurse who had been there before so I didn’t go in. The sub nurse made a mistake in calculating the bolus and gave an extra unit.

I e-mailed the district’s head nurse, making a copy of the lunch slip showing the mistake. I wanted it to be on record. I appreciated that the district took the matter seriously. It was in all likelihood an honest mistake, but it was one that had the potential to have a harmful outcome. The point is that I wanted it on the record because dosing insulin correctly is serious business.

And I’m not saying I myself have never made a dosing or carb counting mistake sending her high or low, but we have to trust in the school system that our children will be cared for and kept safe when in their charge.

My point in recounting these personal stories is to tell you that we cannot rely on the school 100% to make sure our children are safe and that protocol is followed, but there are some things we can do to minimize the the potential for life threatening mistakes.

1. Put a 504 in place so that all staff know the proper protocol for your child.

2. Have a 1-2 page instruction sheet that is given to all subs who may not be familiar in your child’s care in addition to all staff who see your child during the school day.

3. Use appropriate sized syringes or pens and/or set upper limits on the insulin pump to lessen the chance of giving too much insulin. Keep your child’s diabetes supplies separate from other children at school.

4. Trust your gut. If there is a nurse that you do not have a good feeling about, let it be known. See if a different nurse can care for your child.

5. Go in to school when there is a sub nurse who is not familiar with your child’s care, if possible.

6. Report all mistakes to the district so that they are on record. Keep documentation.

Obviously this life threatening mistake that could have killed a child last week is the exception. As a d-parent I am tremendously relived to hear that the child lived to tell. But small mistakes can have serious consequences for our kids with type 1 diabetes and we need to do what we can to minimize the possibility.

Are there any other systems in place for your child that help minimize the possibility of mistakes and ensure their safety at school?

Further Reading

I describe our 2-page instruction sheet in Kids First, Diabetes Second.

{Diabetes at School } 504 Plan

Read more posts about Diabetes at School.

ADA Read the Safe at School: Safety and Fairness for Children with Diabetes information and learn about your legal rights for your child at school.

JDRF You can request a School Advisory Toolkit and can also ask that a mentor contact you.

Children With Diabetes Sample 504 plans by age that you can download.

Please remember that I never give medical advice. Ask your endocrinologist or pediatrician for advice about your own child. Make your own informed decisions for your own child.

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{ 17 comments… read them below or add one }

1 Mike Hoskins March 18, 2013 at 9:07 am

Ah, I remember the good old days when 504s existed but weren’t needed… certainly missing the 80s right now. Good blog, good advice. Thanks for putting this out there, Leighann. Incredible mistake made in that story and I will be interested in seeing how the school handles it.

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2 Michelle Gonzalez March 18, 2013 at 10:18 am

I’ve heard the same thing, that a 504 isn’t needed, many times from other parents. We’ve had a 504 in place since Sarah went back to school after her diagnosis, and it’s updated every year. Truthfully, we haven’t had much cause to need it, but I’m okay with that! It still makes me feel better to know that the school knows what I expect of them.

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3 Shawn March 18, 2013 at 11:11 am

Hi! My T1 daughter will be going to Kindergarten next year and I have been doing as much research on this as possible. What is your advice when the school doesn’t have a full time nurse and you are told that your child’s classroom teacher will be responsible for your daughter’s care? Oh, and I should also mention that I was told that “diabetics don’t have 504 plans.” Thanks in advance!

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4 Leighann March 18, 2013 at 11:23 am

Diabetes is covered under section 504 of the Rehabilitation Act and is absolutely covered under the 504 plan.

To ease your mind, when my daughter was in kindergarten the nurse was only there for about 20 minutes each day.

How we handled it was:
-Training ALL staff that see her throughout the day
-Giving all staff our 2 page instruction sheet with the basics of lows/highs
-Making sure that we were called (and now it is also texts) for all lows/highs
-Training another staff member to perform all duties that a nurse would. For us it has always been the assistant principal. Granted, I talk him through boluses, etc. But he is the person who my daughter sees when the nurse is not there. He is designated as the “trained diabetes personnel” in her 504.

During her kindergarten year we waited a few months to put our 504 in place because we wanted to see what other issues we might need to address. But the staff training and instruction sheet were given before school began.

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5 Shawn March 18, 2013 at 2:20 pm

Thank you so much! I am going to have to push for the 504.

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6 Lisa March 18, 2013 at 11:16 am

In my experience, it is also very important that my six-year-old son understands the ins and outs of his diabetes management. This gives me peace of mind that although young and still learning a lot he can be a second set of eyes when a bolus is being done and carbs are being counted. He has caught my mistakes before and called me on them, so I know he is capable. He is also taught to fight for himself and never let anyone dismiss him if he needs anything to do with his health.

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7 Aimee March 18, 2013 at 10:31 pm

Yes, it is soooo important to teach our children as much as they are capable of learning from the get-go. My 4 y/o daughter is in preschool and today her regular teacher was out sick. Another one, who is not familiar with Liz’s routine, was subbing. Liz had to let her know that she needed to go to the office to be checked before lunch. I was so proud of her!

Two months after she was diagnosed last year, at 3 1/2 years old, she was already checking her own BG. And now I tell her how many carbs to bolus and she does it herself on the PDM. Besides being good for her to learn, I feel it gives her some tiny sense of control – since there is so little she can control about her T1D right now. Besides, children can comprehend way more than we ever give them credit for!

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8 Emily March 18, 2013 at 11:44 am

Not that I would use them, but who makes the 10 unit syringes? The smallest I have ever seen is 30 unit.

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9 Leighann March 18, 2013 at 11:52 am

You are right! I double checked the syringes after I wrote the post and changed it to say 30 units. We so rarely give injections that I couldn’t remember off the top of my head. Thanks for pointing that mistake out.

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10 Emily March 18, 2013 at 2:06 pm

Well bummer! In the scenario you point out above… 30 units would still be wayy to much for some kids. A 10 unit syringe with 1/4 and 1/2 unit markings would be great… I know some 30 unit syringes have 1/2 unit markings.

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11 Jen March 18, 2013 at 12:24 pm

I was a T1D child of the 80s and I just remember my mom having meetings with my teachers every year with my “special Jen Box.” I don’t remember having a 504 though. (However, we had a FT school nurse back then… ah, memories.)

Good info though. But seriously… what nurse doesn’t know SOMETHING about hypoglycemia?

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12 Leighann March 18, 2013 at 12:48 pm

Thanks for your comment!

I think a lot has changed since we were in school. Class sizes are huge now and teachers can’t always take the time to tend to one child.

Many schools have no nurse or there are multiple nurses who come and go.

Our nurse has to go to three different schools during the day.

Plus, diabetes management has changed and is much more intensive now.

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13 Jenna March 18, 2013 at 12:46 pm

Thanks for posting this. I was looking for additional 504 resources.

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14 Shara March 18, 2013 at 5:36 pm

Thank you for blogging about this — such an important issue. I am in Pedi Endocrine training and we get calls to our office all the time from school nurses who need clarification on insulin orders/doses. We welcome those calls, but they happen so frequently that it really makes you wonder how many situations are not caught and/or clarified. Diabetes is a very complicated disease to treat on a daily basis compared to a constant-dose pill dosed at lunchtime for ADHD, etc. Speaking up (by either the parent or patient) and double-checking everything is really the best insurance against horrific mistakes.

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15 Maxine March 24, 2013 at 10:51 am

My T1 daughter was diagnosed in 2nd grade and we didn’t need a 504 plan through 2nd, 3rd, 4th, & 5th grade because aside from her music, gym & computer lab teachers she only had 1 primary teacher and they were terrific. All of her teachers were very familiar with her and knew when she was high or low and it just wasn’t an issue. The biggest issue was when she was low (in the 30’s & 40’s) at times staff would walk her to the main building to call me instead of getting snacks/glucose to her.
Fast forward to 6th grade with 8 classes & 8 teachers who haven’t really gotten to know my T1 daughter…. we completed and now use our 504 plan almost daily. This year especially has been a struggle with hormonal changes & increased school/homework stress drastically affecting her blood sugar levels every week or two.

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16 Ann June 19, 2013 at 12:29 pm

With all the problems associated with sending our T1 children to school, I sometimes wonder if it’s worth the bother, given the state of public schools today. My son will be entering kindergarten this fall, has never been to school as he was diagnosed right before pre-K last summer. I’ve been so nervous about the whole thing and have already received a lot of resistance from not only my elementary school but the district as well when I try to approach them regarding his care. I’ve been brushed off by both the principal and the district office twice when asking for someone to either call me or meet with me. Does anyone out there believe homeschooling may be a viable option?

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17 Leighann June 19, 2013 at 12:40 pm

I personally wouldn’t change education plans (school vs homeschool) just because of diabetes.

I was stressed right before my daughter started kindergarten, too. But it all came together.

Many staff members aren’t there during the summer, so you may not get much help right this second.

But perhaps you should find out who is the head nurse for the district and start there. You can also ask the district who at your school handles the 504’s. It may be the asst principal.

I know it’s difficult, but don’t be too stressed. You’ll get this figured out. And your child will have a great time in kindergarten.

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