Uncooperative Diabetic Question

[KKEGS]

Alright nurses! Help me figure this one out! Having issues with this student and family on multiple fronts.

4th grade boy with type I diabetes. Diagnosed 1 year ago. Has the Dexcom G5 CGM and an Omnipod pump. Usually very responsible with it. In the fall I attended his parent/teacher conference because parents had some concerns that his 504 wasn't being followed. They were specifically concerned that he wasn't being escorted to the health office by an adult when he was feeling or alarming that he was low. Turned out that he was not being walked to the office but was observed down the hallway while he walked to the office. Also parents were concerned that he was missing too much time by going to the health office to do finger pokes and treat his highs and lows. We came up with a plan that everyone seemed happy and comfortable with.

Fast forward 5 months. Here I am thinking everything is going along just fine when, about 2 weeks ago, I get an angry phone call from this student's father. Dad has just found out that yet another nurse (our 3rd one this year) has quit and he is angry about the turnover and the fact that every time a new nurse starts they get multiple phone calls a day while the new nurse is figuring out this student's routine and treatment. I acknowledged his frustration, expressed my concern also and my goal of keeping their son safe at school, yada, yada, yada and then directed him to my boss, the Director of SPED to voice his concerns.

I get more phone calls throughout the week about the parents' concerns that this student's treatment plan isn't being followed and that we don't trust their son to put in his own numbers and that we aren't allowing him to be independent. Their son is telling them one thing and I was able to confirm via our charting and speaking with the health office nurse and his classroom teacher that what the student is telling his parents simply isn't true.

Now we have a series of subs in the health office as we conduct interviews to find a permanent replacement. I have given them a heads up about this family and have advised them to contact me first if they have any questions and we can try to troubleshoot and only call the parents if necessary because they seem to get so angry about being contacted.

Today's sub contacted me because he is being quite defiant and uncooperative. He gets annoyed that we ask what his BG is and how many units the pump is giving him, how many carbs he's eating, etc. He seems to think (and maybe his parents do also?) that he shouldn't need to tell us any of this information. All we do is write it down and let him go on his merry way. But we are responsible for his safety and shouldn't we know this information each day?!?

Anyway his spring parent/teacher conference is tomorrow and I am attending again along with his counselor/case manager (he's currently being evaluated for SPED which I think may be part of parents' bad attitude) and his classroom teachers.

Basically I guess my question is how do I go about informing his parents about how uncooperative he is being (sometimes he is downright rude!), our need to know his daily numbers, and that he isn't being truthful with them without ruffling their feathers even more? Right now they really seem to think that we are the bad guys.

[Cattz, ADN]

KKegs- How is today going with this situation. This is alarming on so many levels. One day this family will look back and realize what a great advocate you have been for this child. ( I am guessing it will be something like when our own kids grow up to be adults/parents- they realize just how smart we really have been all along!)

[KKEGS, MSN, RN]

Hugs to you. But you have 10-ish weeks left....does that help??

Yes it does. Spring Break starts tomorrow and when we come back I have 10 weeks left. And then I'm finished with my school nurse career. I haven't announced it because I didn't want to make a thing of it but I am expecting my position to be eliminated due to budget cuts. Even if it doesn't I'm giving my notice. I am going back to my first love: the NICU.

[KKEGS, MSN, RN]

KKegs- How is today going with this situation. This is alarming on so many levels. One day this family will look back and realize what a great advocate you have been for this child. ( I am guessing it will be something like when our own kids grow up to be adults/parents- they realize just how smart we really have been all along!)

Haven't heard a word yet. My office is in a different building. I'm checking in with the building nurse. Conferences are tonight.

[Have Nurse, ADN, RN]

Be direct but respectful. This is a "learned" behavior he is displaying. He is making your job more difficult than it needs to be. He is old enough to know right from wrong.

Part of nursing is educating those involved. It is perfectly acceptable to "educate" his parents regarding his behavior.

But don't assume it will be taken happily. Be ready for the backlash.

He can't be given the care he needs if all are not on board. Document everything including what you are trying to do to fix it.

[hppygr8ful, ASN, RN, EMT-I]

We have a fair number of adolescent and preadolescent type 1 diabetics on pumps who end up at the psych hospital. I find then scary as heck because our facility does not require the pump to e removed and so they have in their possession the ability to give themselves a fatal dose of insulin at any time. The struggle for autonomy at this age plus adjusting to the knowledge that they have a life time chronic disease diagnosis leads many of these patients to have suicidal thoughts. Most of it is passive suicidality but the physician's feel it is important for these young people to have some level of control as they will be doing this for the rest of their lives. Because they are in-patient our dietary department counts the carbs and the kids administer their own insulin as they would do at home. They keep a written journal which they present to the nursing staff twice a day which tells how much insulin they have given themselves and how many carbs they are eating. If the suicidal thoughts are persistent the pump is removed. But these kids are going to have to learn how to manage their disease on their own and perhaps this boy's non compliance in more likely pre-teenage acting out to prove his autonomy more than anything else. From psych perspective and with a teenage boy myself I can see how embarrassed he might feel to be walked to the nurses office every time his BS falls outside the low/high norms and needs correction. It's a heck of a conundrum because you as the school nurse are responsible for his safety. I am not sure how you address this as I only deal with the kids who ultimately can't or won't manage their pump properly. No easy solutions except to call the parents every time an episode of non-compliance occurs and go from there.

Hppy

[JenTheSchoolRN, BSN, RN]

Oh, KKEGS, catching up on this thread after a snow day and firstly, just ::hugs:: We have all had a family like this this, one that insists we are doing everything wrong and yet doesn't provide us with the tools to do everything right and have one communication volume (LOUD).

I have always felt drained after having to communicate with a family like this. But fortunately (or unfortunately) I have gotten better at nodding and listening and remaining calm and going through my reheorificed script in my head. I suppose this is one area that I grateful that I am a theater person for :).

And dosing off the Dexcom without access to the Dexcom? Wow. Does the student's doctor know that a) the student nurse doesn't have access to the Dexcom? and b) that parents are also not sharing data from the Dexcom?

And as others have said, I haven't had a doctor write that is was okay to give insulin off Dexcom numbers but I can treat a low from them. This year is the first year I've been working in depth with a student that has one (I have access to the data and a great relationship with the parents thankfully) and frankly, the numbers have been off a few more times that I expected going in. A high has been about 40-60 off (i.e. saying 310 when sugar is 370) and that definitely impacts insulin dosing. I do love its use to alert me and the student though.

[ruby_jane, BSN, RN]

We have a fair number of adolescent and preadolescent type 1 diabetics on pumps who end up at the psych hospital. I find then scary as heck because our facility does not require the pump to e removed and so they have in their possession the ability to give themselves a fatal dose of insulin at any time. The struggle for autonomy at this age plus adjusting to the knowledge that they have a life time chronic disease diagnosis leads many of these patients to have suicidal thoughts. Most of it is passive suicidality but the physician's feel it is important for these young people to have some level of control as they will be doing this for the rest of their lives. Because they are in-patient our dietary department counts the carbs and the kids administer their own insulin as they would do at home. They keep a written journal which they present to the nursing staff twice a day which tells how much insulin they have given themselves and how many carbs they are eating. If the suicidal thoughts are persistent the pump is removed. But these kids are going to have to learn how to manage their disease on their own and perhaps this boy's non compliance in more likely pre-teenage acting out to prove his autonomy more than anything else. From psych perspective and with a teenage boy myself I can see how embarrassed he might feel to be walked to the nurses office every time his BS falls outside the low/high norms and needs correction. It's a heck of a conundrum because you as the school nurse are responsible for his safety. I am not sure how you address this as I only deal with the kids who ultimately can't or won't manage their pump properly. No easy solutions except to call the parents every time an episode of non-compliance occurs and go from there.

Hppy

I always appreciate your perspective, Hppy. Thank you!

[OldDude]

Well, how were things when the smoke cleared last night?

[Flare, ASN, BSN]

catching up after 2 days of snow filled fun... yay...

the whole family needs more education about t1d. The dexcom needs to accompany the child to school so that trends can be tracked throughout the day. The argument that the child does meantime fingersticks is invalid. I have a child that has a libre and still occasionally does fingersticks. they don't always agree.

If the child wants to put his own number into his pump, then that's fine, but it can't be completely unsupervised. He has to have the nurse on duty check and record his numbers prior to him hitting the go button. If another student comes in, during that time, my rule is that unless it's life and limb, it has to wait, my diabetics and their numbers are important. I tell the staff and the students all the time not to distract me during the times that i'm recording.

I know you already had your meeting and I hope it went well. I hope you armed yourself with a copy of his orders and explained to them the importance of the school knowing fully what is going on with his and his disease for the third of the day that he is in your care. A lot can happen in that time. I hope that you did explain to them that he is not being compliant. Because it's so easy for the small lacks in compliance now to turn into big issues later - not coming all together, then disregarding carbs, then skipping insulin doses. He's got to learn to keep his treatment tight.

[Cattz, ADN]

Wow. This thread is so intriguing to me. What a tough spot for you Kkegs. My hubs is T1 and I have treated more of his very scary lows than I want to remember. I can't imagine being responsible for someone's child and not have all the information and tools to manage safely. Still sending hugs to Kkegs!

[KKEGS, MSN, RN]

Well, how were things when the smoke cleared last night?

Well the meeting went much better than I thought it would. Parents stayed calm. I reassured them that we are following the plan that we established in the fall. Dad said the student doesn't like to check his sugars or do anything regarding his diabetes at home so dad "ass"umed he wasn't doing it at school either. Myself and the school social worker, who is our backup Diabetes Trained Personnel confirmed that we do nothing beyond observing and recording his numbers. That seemed to help. And I was honest about his lack of cooperation but this seems to be a pattern of behavior in other areas of his life as well so...I am pleased with how we left things.

And we hired a new nurse for that building who I am confident will be in for the long haul so that should make the parents happy as well.

[MrNurse(x2), ADN]

And I was honest about his lack of cooperation but this seems to be a pattern of behavior in other areas of his life as well so...I am pleased with how we left things.

So this is the crux of the matter. Back in the 70's and 80's, this little one would have had no power in his defiance. Today, students call the shots. They are allowed to rage when things don't go their way. They get plans to allow further disrespect. This would have never been seen as a favorable outcome a generation ago. We ask why events happen, maybe we need to look at little things like this and realize our generation has allowed it.