Managing Type 1 Diabetes

My daughter has type 1 for the last seven years and her A1C is currently 7 so I feel reasonably competent to answer your questions.

Having a physician plan of care is not optional. It is mandatory. If the child has been diagnosed by a physician (which I am sure he has, since he has insulin and stuff) then he needs a school plan. In Virginia it is called a '504' plan. It details the type of diabetes, the treatment including lantus dose and sliding scale as well as carb ratio per meal and correction factors. It also tells you what to do in the even of a high blood sugar. For example, my kid is supposed to test for ketones via urine strip when her sugar is over 250.

You should also know that even when the child and parents do everything RIGHT the kid still can have whacked out glucoses.

Type 1 is an absolute BEAST to manage. It requires a lot of money, education--a lot of times self directed- time, and energy.

You can ask the child to produce his meter and scroll back through the readings. What he is telling you may not be the truth. Shocking, I know, LOL. Also maybe a family meeting to assess whether or not the family can actually AFFORD insulin and test strips and stuff? (I'm just saying, I have GREAT insurance and I spent out of pocket upwards of about 400.00 a month on diabetic supplies.

Thank you so much for your reply!

He has written orders from his doctor (multiple pages) but they do not specifically address whether or not he needs to be supervised when his blood sugar is high. His doctor's orders address his insulin needs for a correction bolus and his premeal insulin (currently 1 unit per 8 grams of carbohydrates).

His 504 plan is currently being written by a SpEd teacher at the school.

Currently, if his FSBS is over 240, his plan says to check for ketones in urine, give a correction dose of insulin then recheck in 2 hours. That's it. It doesn't say what he should do for those two hours so he has been staying in the school office. This week he literally spent at least 25% of his school time in the office rather than in class.

The principal and secretary let him stay in the office because they don't know if it is safe for him to be in class. As far as I know, it would be safe for him to be in class when his FSBS is high (a urine is negative for ketones) but as I said I don't have much experience with DM Type 1 so I am trying to gather information.

What was your daughter's management plan for high blood sugar while at school? Did she stay in the office? Go home? Go back to class?

I am sure that Type 1 Diabetes can be a beast to manage! I had Gestational Diabetes (insulin dependent) while pregnant with my now 4 1/2 year old daughter. I communicated daily with a Diabetes Educator by email (with my FSBS results, carb count info and insulin dosage info) and my insulin was adjusted frequently (always upwards). By the time I gave birth, I required 78 units of NPH each night to meet my morning fasting FSBS goal; 18 units of Novolog insulin prior to breakfast with no more than 45 grams of carbohydrate; 15 units at lunch and 12 units at dinner and no more than 60 grams of carbohydrate for those meals. I thank God my GD resolved after my daughter was born and I can't imagine having to live that way for the rest of my life...let alone how it would feel to be in 5th grade dealing with it!

I want to be able to help this student manage his diabetes AND I want to be able to reassure him, his parents and the staff that he is safe. I don't want his education or his health to suffer because we are not following best practices. I'm just trying to figure out what those best practices ARE.

I am going to contact his doctor's office to get clarification on this issue. Thank you so much for your reply!

Isn't sick day management part of his doctor's plan/ orders? Ours state something to the effect of if 2 blood sugars over 250, then check for ketones in urine. If has mod/large ketones- initiate sick day management. So I call the parents to come and pick up.

This is coming from a nurse with Type 1 Diabetes. I've had diabetes since I was 9 years old and my specialist when I was a child was pretty extreme. He told my parents that high blood sugar was no reason to stay home from school or get special treatment. Now I feel like crap when my blood sugar is high and I felt like crap as a kid but I also learned not to use my diabetes as an escape from responsibility. As an adult, if my blood sugar gets out of whack, I take insulin and I feel better within an hour on Humalog and of course depending on how high it spikes or if DKA takes affect, it may take longer to resolve. I am no doctor but I have Type 1 Diabetes and I have been an adolescent psych nurse for over 5 years. I would recommend giving an appropriate insulin dose to control hyperglycemia and then sending the child to class (doctor approval of course). This way the child will not purposely induce hyperglycemia to get out of class.

Of course follow up with a glucose reading shortly after. Diabetes is frustrating for both nurse and patient. Trust me.

Can you clarify? you said his fasting was high but also that he couldn't remember his breakfast?

I have 2 T1s Both teenagers now. Living hell. To me, it is not as important to monitor highs as much as lows. If he is in the high 200s, and you can get him to bolus or have a shot (is he on a pump or have a CGM?) Then he should be ok-still make sure he doesn't get too high. My youngest has horrid behavior issues when he gets high; the other, not so much.

The only issue I have ever had that was untenable was a low. My son was 34, pale as a ghost, sitting on the floor and semi-unresponsive. They freaked out. The nurse was there and she happens to be a T1 mom that I know. They wanted to write him up for not following instructions when he wouldn't eat or drink. He was barely coherent!!! Go get the glucagon or cake icing, at least.

It is so difficult. We are very involved parents and it is a struggle. I know all the school nurses and they tell me all the horror stories about parents that just don't get it.

As others have said, there should be a HCP and orders from a doctor, at a minimum, if not a 504 Plan.

clarify with endo/parents. hopefully the parents are in contact with endo sending numbers in and adjusting doses.

as this original post was from september I hope things have gotten better for him. with growing kids there is a constant need to adjust doses due to growth hormones.

when my type 1 7yo is in school i do not expect him to stay in the nurses office for a high. his nurse will give him a correction depending on when his last dose of insulin was given, check for ketones if he is able to urinate, and send him on. he has cgm and a pump so there are also things that may need to be looked at as to why he is high. it is not the norm for him to be high for long because I adjust doses and we work hard to figure out what is going on with him based on his cgm readings.

was he dropping low due to stacking insulin? activity? is he in gym?

I would recommend having parents write down his morning blood sugar, breakfast dose/time and sending a notebook back and forth. you need to know what is going on when you aren't at school, his endo, and his parents. It might help find patterns to his highs and lows.

Is he self monitoring? is someone at the school trained since you aren't there to help him? can they help keep a log instead of relying on him to remember.

I do not want my kid to test when he is high but I am ok if he goes back to class as long as his health plan is being followed (correction if warranted, ketones checked, no exercise if ketones present).

I am the parent of 2 T1s and it sounds like the parents need a lot of help. Does this child have a CGM and/or insulin pump? The new protocols in newly dx should include a CGM d/t honeymooning.

My kids have plans that call for highs to be treated and ketones checked, then they go back to class. There are strict parameters for treating lows. They are not to be left alone and are not to travel alone.

We have extensive paper work outlining behavior issues related to high/low BG.

This sounds like a hot mess, to be honest. T1 is horrible. Mine are both teenagers now and it is literal hell.

I really think the parents need way more education. If the child is that uncontrolled at school, think what he/she is like at home. ?