Please Help a Clueless Girl Scout Leader (Diabetes Info)

[SILLYANDI]

OK, I'm not totally clueless , I have had gestational diabetes with 3 pregnancies and insulin treatment for 1 short month of that time, but I want to make sure my scout is safe.
I have a scout who was diagnosed with Type 1 Diabetes 2 years ago. She is now 10 and her mom feels she can regulate, administer and care for herself on her own. Previously the mom has accompanied us on our trips, but now she feels it is the girl's responsibility to take care of herself. She does test and administer shots herself with one of us leaders overseeing and holding her arm for her.
We have asked mom for specific instructions of what to do and when. I was given a list that says: "Correction for snack- Over 200- .5 units of Novolog, Over 300- 1 unit of novolog, over 400- 1.5 units Novolog". No joke, that is all.


We went on an overnight trip last month and the girl eats whatever she wants and only sticks to her set # of carbs, proteins etc if you ask her "are you supposed to be eating that?". Her answer is usually no, but without a set script I have no idea what portions she is supposed to have and when. We made constant phone calls to mom because at night her blood sugar was 352 before snack, she woke up in the high 400's and within 1 hr of breakfast and morning meds she was 50. According to my first aid training BOTH of those situations were an emergency and we should have gone to the hospital, but both girl and mom say it happens all the time. She continued to be all over the place the whole day (at Disneyland of all places) and everytime we had to call mom and ask for directions. Mom says her pancreas still works sometimes and that is what causes the fluctuations. Watching the girls actions and my own little bit of knowledge about diabetes tells me she really isn't ready to manage this alone and I don't feel comfortable with the current situation.
Next month we are going to a camp that has no phone service and no RN on staff. Our Council does not have a policy on medical issues like this.
How (and what) do I need to ask mom in order to be able to take care of her daughter properly?
I know I need a specific list of her diet (ie how many servings for each meal). I need a much more comprehensive listing of what medications she gets and when she should get them. I have a general idea of what constitutes an emergency and what to look for in her behavior, etc, do I go by mom's rule of thumb or my first aid training?
Should I insist mom go with us? (she doesn't hover, she usually reads a book or stays at a hotel nearby and only comes to the camp to administer the meds 3 times a day..)
I really want the girl to have the same experience as the other girls but I also don't want her to die in my care!

 

[steph124ny]

Is mom allowing the child to eat whatever she wants???? That's CRAZY! I would refuse to be responsible for the child until her own parents take responsibility for her diet and her meds!!

 

[SILLYANDI]

Is mom allowing the child to eat whatever she wants???? That's CRAZY! I would refuse to be responsible for the child until her own parents take responsibility for her diet and her meds!!

Yeah, pretty much. She tells us that it is up to the girl to decide if she wants to be healthy. She is old enough to realize that making bad choices will affect her negatively down the road (did I mention she is TEN?!) most 20 yr olds have trouble understanding that concept.

 

[Tess'smom]

Can you tell the Mom that she must come on the trip too? Then she would be responsible for her daughter's care.

 

[steph124ny]

Yeah, pretty much. She tells us that it is up to the girl to decide if she wants to be healthy. She is old enough to realize that making bad choices will affect her negatively down the road (did I mention she is TEN?!) most 20 yr olds have trouble understanding that concept.

I find that downright abusive and I think I would hotline her. I'm not one to just call in the authorities over nothing, but GEEZ! She could kill that kid by not supervising her medical treatment!!!

 

[lovetoscrap]

Wow. No way I would want responsibility for that. I have a 10 year old that is very responsible, but never in a million years would I leave that up to her to decide. Particularly in a group situation where there is the pressure of wanting to be just like her friends and eat what they are. She only has a lactose intolerance and I often have to remind her to take a Lactase if she is having dairy and to take them when she is going out with friends. And she knows that she will be very miserable and sick to her stomach for hours if she consumes dairy. So "She is NOT old enough to realize that making bad choices will affect her negatively down the road" And that is a huge difference from having to be responsible for something that could kill her.

Have you called your Council and asked them for their advice? While they may not have a specific written policy for this, they may be able to advise you, particularly towards the liability issues and given the circumstances they may tell you that you can not take her without Mom there.

I personally would absolutely insist that Mom has to be responsible for her care. If she wants to get a hotel room or sit and read a book that is fine, but she needs to be onsite whenever the child needs to be monitored-- if it is meals, snacks, bedtime, wake up, whatever.

And if this is her lackadaisical approach to something this important I would be very worried about how much supervision the girl is getting at home towards staying healthy and learning to live with Diabetes.

 

[Jen_in_NH]

Wow - sounds like quite a confusing situation.

I don't have any good advice, as my son is too young for me to worry about these things yet (he's a 3 year old type 1).

From your description, she is on sliding scale insulin, but it doesn't sound like she's also covering the carbs she eats with insulin. As far as what she's eating, kids with Type 1 can eat anything other kids do, they just need to cover it with insulin. Not to say they should eat junk 24/7, but they can certainly have treats the same way any other kid would.

The crazy numbers can be pretty common, especially at someplace like Disney, where the activity and excitement can wreak havoc on you. I've heard that tween girls can have really wacky numbers just from hormones too. Not to say that 400s and 50s aren't bad, just that in and of itself, isn't an emergency. Treat and move on is what my son's endocrinologist keeps telling us

As far as what you should know before taking this girl on a trip, my thoughts would be:
1. When should she be checking her blood sugar?
2. You have the sliding scale she's using, but is there any bolus for what she eats? Or does she have set-carbs for meals, and that's built in to the sliding scale?
3. What are her symptoms of a low blood sugar, and how does Mom want it treated?
4. If her blood sugar is high between meals, should she correct for that number?
5. Does she test for ketones if she's high, and what should you do if she has them?

I'm probably reading too much into the whole thing, but those are all things I make sure my family knows when they watch my son for a few hours.

I hope that helps. Good luck finding a solution to all of this. And, as a mom of a Type 1 kid, thanks for looking out for her

 

[SILLYANDI]

Wow - sounds like quite a confusing situation.

I don't have any good advice, as my son is too young for me to worry about these things yet (he's a 3 year old type 1).

From your description, she is on sliding scale insulin, but it doesn't sound like she's also covering the carbs she eats with insulin. As far as what she's eating, kids with Type 1 can eat anything other kids do, they just need to cover it with insulin. Not to say they should eat junk 24/7, but they can certainly have treats the same way any other kid would.

The crazy numbers can be pretty common, especially at someplace like Disney, where the activity and excitement can wreak havoc on you. I've heard that tween girls can have really wacky numbers just from hormones too. Not to say that 400s and 50s aren't bad, just that in and of itself, isn't an emergency. Treat and move on is what my son's endocrinologist keeps telling us

As far as what you should know before taking this girl on a trip, my thoughts would be:
1. When should she be checking her blood sugar?
2. You have the sliding scale she's using, but is there any bolus for what she eats? Or does she have set-carbs for meals, and that's built in to the sliding scale?
3. What are her symptoms of a low blood sugar, and how does Mom want it treated?
4. If her blood sugar is high between meals, should she correct for that number?
5. Does she test for ketones if she's high, and what should you do if she has them?

I'm probably reading too much into the whole thing, but those are all things I make sure my family knows when they watch my son for a few hours.

I hope that helps. Good luck finding a solution to all of this. And, as a mom of a Type 1 kid, thanks for looking out for her

THANK YOU! That is exactly what I was looking for. I have NO IDEA how to care for this child. Mom leaves it all on her and assumes that her daughter is not going to pass out or be incoherent and is going to be a fully able to explain to us what and when...but so far she hasn't displayed that while healthy at meetings or on day trips (or our one overnight disaster to Disneyland), I worry about us not noticing her sliding and she being unable to communicate then we can't do anything to help. Somebody mentioned Glucogen to me yesterday and I have no idea what it is or if this girl carries it let alone how to administer it.
I understand that excercise, stress and other things affect levels but her blood sugar is not regular ever. We meet right after school weekly and she has never been is the normal range. She is always at an extreme high or low. I know she is supposed to stick to a diet but she can not verbalize exactly how many of each servings she is supposed to have at a meal. She gets them confused. When I call mom she says "don't worry about it, just let her eat what she wants then correct it after". Not knowing anything more than the short sliding scale list she gave me I don't feel comfortable letting her eat a huge bunned hamburger, huge serving of fries, full sugar soda and a churro and hoping that she doesn't go into shock or a coma before she has time to "correct it". Especially if she is testing high before it goes into her mouth.
This is a great list for opening the conversation with mom, I didn't even know where to start and I think if I have direct questions to ask I will get the answers I need. Thanks again!

 

[peemagg]

I wonder if the mother really even knows what her daughter can or can't have and what the restrictions are for her levels? It sounds to me that she is just as clueless as you are to what her daughter can and can't do. That is why she is placing it in her daughters lap. It is easier to make someone else responsible than to do it yourself.

Do you think you could ask your own doctor for advice as to how to handle this a bit better? Maybe they can give you a kind of blanket recomendation for what a Type 1 can and can't eat and a bit of an idea as to what to do when. I know they can't give you anything specific as far as her care, but they might be able to point you in the right direction and tell you that if this was their patient they would recommend this type of diet with this much carbs and helpings.

Something I was thinking of when reading this was when your troop does campouts and other outings, what kind of menus are planned? Are they ones that all the girls like, but wouldn't be too bad for someone who isn't diabetic, or is this girls diabetes taken into account when planning meals? If the troop is eating things as a whole that is better for the girl, it would help her to eat more healthy for herself without all the pressure of wanting what the others are eating, but knowing in the back of her mind that she shouldn't have it, but doing it anyways. It might be something to look at more closely.

Good luck! I hope that you can get more info to help this girl to live a long and healthy life that she can with a little bit of help.

 

[scrapbookworm]

As a fellow Girl Scout leader, I wanted to chime in. What you are describing sounds like more responsibility than I personally am willing to take on. I absolutely would not do it. I draw the line somewhere, and that is way over the line.

If a child needs to take a pill on an overnight trip. Sure. No problem. I'll make sure she takes it.

However if a child needs strict monitoring of her sugar, what she eats, how much insulin to take, then holy cow I will not take on that responsibility. I am a volunteer. Not a nurse. Not a doctor. And not her parent. This is NOT your job as an unpaid volunteer. Being CPR/First Aid certified doesn't qualify us for this type of situation. And I am also concerned that if something bad happened to the child, then the parents could try to hold you personally liable.

If I were you, I would insist that mom come on these trips. That is HER job as a parent. I would also talk to my council rep to let her know of the situation, in case the mom were to play the discrimination card. You want to make sure that you have covered your bases. The council rep might advise you NOT to allow her to go on overnights due to the liability.

Good luck!