Parents of diabetic students

Klimpys · Oct 2, 2012

Interesting timing of this post. My son was diagnosed with Type 1 diabetes two years ago at age 13. I homeschool my children. Always have, and always will. But sometimes it is not easy, since I am also a student in nursing school. However, this evening before I saw your post I was thinking how good I have it in that I don’t have to deal with the school system and 504 plans. It has made homeschooling worth it! I say this with kindness, if you want to see what parents of children with diabetes go through, not only with the crapfest that is T1D, but dealing with their schools, check out the ChildrenWithDiabetes.com forums.

“She always wants to know his IOB (Insulin on Board) numbers when he is low and to be nice the aide usually writes that down (I was covering for the aide that day as she was absent). But I've been told by the pump manufacturer and the doctor and the nurse handling his case that this is not important or necessary.”

OMG!!! Is all that I can say! IOB means that the pump is still going to give him insulin!! If he is low and there is IOB he is going to go lower!

From CWD website:

Insulin On Board (IOB)

Insulin on board is probably the most valuable feature in the latest smart pumps. When insulin is administered via a bolus from the pump, it has a timeframe where it can effectively lower blood sugars. For example, if a 10 unit bolus is given the first hour, 30% is used up in the body (minus 3 units leaving 7 units still working in the body), the second hour another 30 % (minus another 2.1 units leaving 4.9 units still working in the body) and the third hour another 30% (minus 1.4 units leaving 3.4 units still working in the body) and finally the fourth hour the last 10% (minus .3 units leaving 2.97 units still working in the body).

The only problem with this analogy is that not everyone fits this profile. Like basal rates, not everyone have the same rates in a 24-hour period. The latest smart pumps have adjustable time frames to accommodate these differences. Some individuals may set their insulin on board feature at 3.5 hours or 5 hours rather than 4 hours as mentioned in the example above. One way to see what works best for each individual is to check blood sugars each hour after giving a bolus to see how blood sugars react.

Stacking of Insulin

Before the insulin on board feature was available, many individuals would have a high blood sugar (i.e., 250 mg/dl) 1-2 hours after eating (postprandial) and consistently give a correction bolus to bring their blood sugar down to a normal range. The problem with this technique is not accounting for the insulin on board in the body and often going low by overcorrecting. Now, after inputting a blood sugar of 250 into the pump, the pump will account for the insulin on board and possibly suggest a different correction bolus, which will help avoid a low blood sugar. For example, a person who has a target of 100 mg/dl and an insulin sensitivity factor of 50 (1 unit of insulin will drop the blood sugar 50 points) in the example above would normally give a correction bolus of 3 units to get to 100 mg/dl. Now, using the insulin on board feature on the pump, the pump may only suggest 1 unit based on how much insulin is still working in the body rather than 3 units.

Insulin on board calculation can also work when a blood sugar is only 95 mg/dl an hour or two after eating. It is common for blood sugars to rise 60-80 points higher than the pre- meal blood glucose reading even when a correct dose is given. If a blood sugar is taken 90 minutes after eating showing a 95mg/dl that may be a red flag knowing it is common for levels to go up somewhat after eating. Looking at the insulin on board feature on the pump may show 4 units still working in the body, which may indicate the need for carbohydrates to head off a low blood sugar.

She shadows him to keep him alive. As he gets older she will loosen the reigns. My ds does most of his own care, but puberty is wreaking havoc on his BG numbers. These are things you don’t learn in nursing school. The pediatric endocrinologist and the certified diabetes educator haven’t taught me diddly compared to other parents in the trenches. You sound like a caring and competent school nurse. Sadly there are some that aren't and that is why parents of Type 1 diabetics become anal retentive.

allnurses Guide · Oct 2, 2012

She shadows him to keep him alive. As he gets older she will loosen the reigns. My ds does most of his own care, but puberty is wreaking havoc on his BG numbers. These are things you don’t learn in nursing school. The pediatric endocrinologist and the certified diabetes educator haven’t taught me diddly compared to other parents in the trenches. You sound like a caring and competent school nurse. Sadly there are some that aren't and that is why parents of Type 1 diabetics become anal retentive.

Thank you. I realize my perspective is compounded by how difficult it is to find a common ground between what the parent wants and what the diabetic educator RN and the doctors say. Which is one reason we have done what she asks.

Usually the health aide does the morning blood glucose and afternoon blood glucose. I'm technically only here for pushing the "GO" button for insulin. In California, only a nurse or physician may do this. (Of course the parent can do it and funny enough the parent can train someone who doesn't work for the school district to do it too).

The mom isn't worried about IOB with low blood sugars. She is worried about highs.

I guess my question is more pointed towards do we keep accommodating the mom in ways we are not necessarily supposed to do. Most school nurses here in my county say if the mom is there, the mom does the care for the student. That frees the school nurse to do more since most school nurses have more than one school and sometimes thousands of students. But we do all the care while she is there and she watches to make sure we do the right thing. I've been told we have bent over backwards for this family. Last year she didn't want him to go on the bus at the scheduled time because she fed him breakfast at that time. She didn't have a car to bring him to school. Our district decided to send a bus back for him after they'd already delivered the other kids.

There are no orders regarding IOB and what to do with insulin and/or carbs. All the examples of what to do with IOB are for the parents or the student as he gets older. We cannot do anything about that at school - I've been told not to pay any attention to that so I appreciate what you posted.

I do frequent the children with diabetes website. I've gone to training with the pump manufacturers. I've done the H.A.N.D.S. Diabetes training. I want to do the right thing for my students.

I appreciate your advice. I have a husband with Type 2 diabetes and he isn't exactly compliant. And if I had a child with diabetes, I'd be homeschooling him also. (I did homeschool my kids in early grades).

Again, thanks.

Klimpys · Oct 2, 2012

Thanks for sharing more info. I am sorry I came across rather cranky. Parents of a CWD tend to circle the wagons when care for our kids is being questioned, and it doesn't take much to make us feel that way, lol! I must say though, I have often felt that some parents go over board when it comes to the demands they place on the school system. This woman falls into that category. Some accommodations are good, such as being able to carry a BG monitor and check BG anytime. Others aren't doing our kids any favors for when they get out in the real world

100kids, BSN, RN · Oct 2, 2012

I had a parent of a diabetic last year who wanted to be kept in the loop in real time all the time. She had had some bad experiences with school nurses before and her daughter's #s fluctuated wildly. This is a woman who has had to get up every night for the past 3 years and check her daughter's sugar just in case she goes low. I can't imagine the fear that comes with that. From my 1st day working with her I asked her if I could text her during the day (I hated calling her work and getting patched through everytime). She agreed and from that moment on I texted her every reading, observation, every action I did in regard to her daughter. Within a short period of time I had earned her trust. She knew that I was going to take care of her daughter during the day. She also saw that I knew what I was doing and sometimes would ask for advice or suggestions. It was tedious at first BUT the rewards for the mom, the child and myself were tremendous. Once I earned mom's trust I didn't need to text her every little thing, just if there were issues. She knew if she didn't hear from me that everything was good. Putting in the extra effort in the beginning gave that mom some peace and assurance. I'd want that if it were my child in school with a life threatening illness. Just my thoughts.

allnurses Guide · Oct 2, 2012

Thanks. I had a very good feeling that we'd earned mom's trust last year.

I don't think the texting would work for us as she's still learning English.

She checks her sons BG in the night also. He has lows at school sometimes in the 40's with no symptoms whatsoever. He has some highs over 300 with no ketones ever.

She doesn't want us checking him with good cause (so he isn't getting stuck many more times a day than necessary) - she's nixed a morning BG check last year and we don't check until just before lunch. So this new thing about rechecking a high BG number because during the summer she decided he may not have washed his hands correctly and rechecked and the number was different started her having us to that at school. Physician's orders are pretty clear about when to do this.

I think I'll contact the physician and see if we can just incorporate this into his plan. That and writing down the IOB so mom feels more secure.

I just know that his BG was high due to the correction two hours earlier of 4 glucose tabs. His lunch coverage was only for his lunch carbs. He didn't get any insulin for his BG before lunch obviously since he was low. His swing to low at home is pretty much par for the course. His numbers fluctuate wildly.

Again, thanks for letting me vent a bit about this. I love this family and the son is very savvy - we watch him run the pump himself WITH SUPERVISION of course. The goal is to have him doing this at school without mom having to come every day and with only the supervision of me or the health aide who's been trained in pump useage and diabetes.

Flare, ASN, BSN · Oct 2, 2012

So mom doesn't want him stick more than necessary to check a morning bg, but wants him to be checked again if the blood sugar is over a certain number? And then gives you a hard time because you didn't feel it necessary to check him? I'm a bit baffled by this parent. I think you're on the right track by communicating with the doc to get solid orders and have the IOB addressed and the meeting with mom is beneficial too. I know how aggrivating it can be to have a parent breathe down your neck. Good luck and feel free to vent any time you want! Lord knows I've got a heck of a vent brewing in me right now!

Wave Watcher · Oct 2, 2012

I have 3 diabetics. One is on an Omnipod, one is on a medtronic, and the other is good ole' draw it up syringe.

2 of my parents want text messages every time I check blood sugar, set pumps for insulin, they want to know carbs, what they ate down to the last morsel.

1 of my parents refuse to text so phone calls only. I have to call her every time before I give insulin. She will change the dosage by 1-2 units (ok by orders) every time. I am not allowed to make a judgement call. If she doesn't answer I have to continue to get a hold of her.

Before one of my students was put on the medtronic pump a few weeks ago....same thing with her. I had to call her every time I gave insulin, checked BS, had to give her a detailed list of every thing that went on during the day on a sticky note and send home, along with logging all his info.

I spend most of my day on the phone with the 3 parents. I am either texting them or talking to them. I also try and run my clinic and see all the other students that walk through my door and need my assistance. I am exhausted at the end of the day.

The nurse before me created this monster of a situation. Now the parents expect this no matter what. They think this is normal.

So, basically, I feel your pain. I understand what it is every day to have to "take care of the parent" more than you do the child. Hopefully, in your meeting there can be an agreement between everyone as to when it would be appropriate for you to call her and that she doesn't need to be in the school every day. Otherwise, there is no need for you to be there for her child. She can come and sit and take care of everything. Now, if I would only take my own advise! Ugh!

mc3, ASN, RN · Oct 2, 2012

Wave Watcher,

I had a similar situation, but not nearly as bad. I will text parents if requested, but I ask them to call me after 1:00 (lunches are done and numbers logged) if they don't use texting, if they want the numbers. (Of course, if the numbers are over the high/low indicated on their care plan, I do call immediately). The school made it very clear that it was her responsibility, and oftentimes I am too busy to call, especially for normal Bg. Lunch is a busy time at the clinic, as I'm sure you know!

We have a Diabetic Care plan, and a Pump care plan. The doctor fills in the ranges for insulin, and checks off exactly what to do for interventions for highs/lows. If it's not on the Care Plan, I don't do it. No leeway. The Pump Care plan does the same thing, and is an addendum to the Diabetic Care Plan. If either Care Plan needs to be changed, the parent must bring it back to the doctor's and get it changed, then bring in to me Until I get a new one, I go by the old one.

I can't be spending my days calling parents back and forth, and neither can you. Our school has over 900 kids in it! It helps tremendously if you have administrators that back you up..

Good luck,

mc3:nurse:

allnurses Guide · Oct 3, 2012

I'll have to check out a "Pump Care Plan". I got back physician's orders today and the doc changed the range to what mom wanted (80 to 150).

My health aide told me when I got there today just before lunch that the child who is usually active and engaged in the classroom was sitting next to mom with his head in her lap. His eyes were glassy. The aide asked if he felt ok and he said yes. But he always says yes. Mom refused to let the aide check him. When I checked him at noon he was ok but the aide and I both said we would have checked him in the morning if mom wasn't there.

The doc didn't address the IOB - so I'm putting that back on mom. If she wants the changes, she can contact his office.

The meeting was set for next week without talking to me about it and I have a meeting that I go to once a month in a town 70 miles from here with other school nurses. I'm tempted to tell the principal that I can't attend the meeting with parents - but I won't do that.

I appreciate the examples you all are giving me. There is no way that I could be in contact with all the parents of diabetic students during the day with each BG check, etc. We had two Kindergarten students last year, one 6th grader and one 7th grader. One Kindergartener moved. The 6th and 7th grade students are at the junior high together now. They manage their own diabetes with supervision - one on a pump and one uses a syringe. I wish the last one would at least get an insulin pen.

mc3, ASN, RN · Oct 3, 2012

If you'd like, I can see if the Pump Care Plan form can be scanned so I can PM you. Just let me know.

Pat :)

allnurses Guide · Oct 3, 2012

If you'd like, I can see if the Pump Care Plan form can be scanned so I can PM you. Just let me know.
Pat :)

Yes, that would be nice. Give it a try. Thank you. :)