My 5 yr old was just diagnosed with type 1 diabetes. Her care plan is that she gets her sugar checked before meals and insulin after she eats. She is going Into kindergarten this year (2 weeks) and I will be packing her lunch for school the only issue is that her insulin dose will depend on her sugar and then a separate dose for her carbs. I will be able to count how many carbs are in her lunch at home and put it in her pack but what if she doesn't eat all of her lunch? I want to make sure she gets the right amount of insulin. I will be talking to her school more in depth next week so I will be asking them too but what do you mom's suggest us to do? And also with thr insulin we were told we could use a vial of insulin for up to 6-8 weeks instead of wasting the medication. What do you mom's do with that. I was considering using the vials for 6 weeks at a time depending on the amount left at the end of the 4 week period. Thanks so much
It was actually one of the nurse educators that said we could use it for 6 weeks. Said that they are good for 3 months but recommended for just 4 weeks of use. So I was wondering what other moms did. We do keep our vials in the fridge at all times unless I am drawing her insulin. She is on such a tiny dose right now that we will not even go through half a vial in a month. Or two even. I calculated if she needs what she's been getting it'd only going to be 250 units a month and then even less at school and she has been needing the half units. And her vials cost us 100 dollars each.
Research a 504 plan. It's a program for any child that has any issue that will hinder their success. It is NOT a behavior plan. Some schools have no real idea what it is.
Please google it then read the law page and then read a bunch of other sites to get information so you can be her best advocate.
This plan will guarantee she has a specific person to watch her and help her with her meds.
Go in and schedule an appointment to talk with your school nurse.
The school and you will have to train her not to throw anything away out of her lunch box and take it with her to the nurses office after lunch so the nurse can calculate her insulin dose.
Follow the instructions on the vials of insulin. The school will track when the vials were opened and started being used and will not give doses after the time limit has passed on the vial.
I am sure she is not the only child in your district with Type I...there will be protocol in place.
I have no experience with diabetes, but my son has food allergies, so I can give a bit of helpful advice. In addition to communicating with the school nurse and front office staff about daily needs, plan to talk to your daughter's teacher and room mom about classroom parties and special events. Make sure they communicate with you in advance regarding the menu and any special treats. In both kindergarten and first grade, my son's teacher and/or room mom got in touch with me before Thanksgiving, the holiday party, Valentine's Day and the end of the year party to tell me exactly what was on the menu. This allowed me to either approve the food that everyone else was eating or send a replacement treat/meal that my son could have. He really likes to be able to eat the same type of thing as everyone else (such as dairy-free pizza when the class has a pizza party), even if he can't eat the actual item that everyone else has. Hopefully you will be able to either calculate the classroom food into your daughter's daily allowances or send her with comparable food/treats so she can enjoy the parties too.
Moving beyond school, have a similar philosophy if she plays on any sports teams. My son plays soccer and baseball, and I always tell the other parents on the team to notify me in advance if they're planning to bring treats for a birthday or something. That way, my son always has something to celebrate with and doesn't feel left out when everyone else gets cupcakes and he doesn't.
Lastly, to the extent that you can, have an ongoing agreement with your daughter that she can have something special if there is an unexpected celebration that you can't plan for and she ends up being left out. With my son, I always let him have a special dessert at home if we find ourselves in a situation where everyone else is getting cookies/cake/ice cream/whatever that he can't have (I always have allergy-friendly treats in the freezer). If a food substitution isn't feasible with diabetes, have other special options available to her, like extra books before bed or a movie night.
Anyway, I hope I didn't veer too far from your actual question. While I don't know anything about diabetes, I do know how tough it can be when your child can't eat the same food as everyone around her. I hope you're able to work it all out and feel like she is getting the care and attention she needs.
I contacted a dear friend who's son has diabetes, he is now in college, but I recall in elementary school he wore a pump.
Here is her message to you,
Wow, my first thought is, I cannot imagine a vial of insulin lasting Luke for 6 weeks! He's bigger & his body makes no insulin now - sounds like a newly diagnosed kiddo whose body still makes a little. Anyway, my recommendation is for her to reach out to the Children With Diabetes forums - http://forums.childrenwithdiabetes.com/forumdisplay.php?3..., as she will get more input from lots of experienced families with children of the same age. JDRF also provides an online forum & email groups in some communities to help with getting info. Insulin-Pumpers.org has a special parents section too, that's where I got so much help way way back.
The other thing I would let her know is: things will be okay. Schools have a lot more experience with diabetes now. Go set up a meeting with the school nurse & the office staff as early as she can. That will reassure her. We used to send Luke with his lunch, write down the carbs, and have an agreement on what he had to eat - and we made the "flexible" part of his lunch usually free foods (no carb options, she'll know what those are). If he really couldn't finish, we had a chart for the nurse or office staff who helped Luke with his insulin bonus.
The nurse should be in touch with the pediatric endocrinologist's office. Our son did fine through K-12th grade with just the school district's health plan documentation & meeting with the nurse each yr, we never needed a 504 plan - but this varies district by district. Please also let her know that my son goes to college 3 hrs away, he manages his diabetes with very little help from us for years now, and he is doing great. I would send my email, but it has been 15 yrs since I had a newly diagnosed kid & 14 yrs since I had a kindergartner, so I think the other forums will be more helpful for that. All my best to her & to you - hugs!
A few things come to mind if I was in your "shoes". Questions I would be asking: is there a school nurse on site daily or who is diabetic trained? More than one staff member in the front office? Do you want to be contacted daily with the amount of food she ate to verify insulin dosage? Will she be able to go outside and play or will she be missing some recess to receive her shot? If she has to go down to the office, who is going to remind her? What happens if there is a special treat given for snack? OK to eat or notify? Will she have special snacks in her classroom/health room if she goes low? How much do you want school to just do? Will you be able to be contacted throughout the day? Each child and family is different. Communication between you and school is key, especially if you are just getting started.
When I was in the office at lunchtime dealing with our son's eating disorder (making sure he ate), I saw a boy come in there every day showing the office manager his lunch and overhead them talk about blood sugar. She totaled up what he actually ate from his lunch, and calculated points of some kind. I'm not experienced with diabetes at all, but it was clear that's what she was monitoring. Our school only has a nurse there once a week, so I think the responsibility went to the office manager.
There are definitely ways they can monitor things at school.
I know that your world is turned upside down since you got your daughter's diagnosis. After you learn how to use a needle and syringe, you should ask your doctor or diabetes educator about switching to an insulin pen. There are insulin pens for both long acting insulin (Lantus/Levemir) and rapid acting/mealtime insulin (Humalog/Novalog/Apidra). The pens are easier to use (unless you have to give 1/2 unit doses) and more accurate and they contain a smaller amount of insulin so you don't waste any. A pen has 200 units of insulin vs. a vial that has 1000 units of insulin. The manufacturers on the vial say it lasts for 30 days. Can it last longer? yes, but it depends on storage conditions and use conditions. So you must ask yourself --does your child have a high blood sugar because it is high or has the insulin lost its potency because it is more than a month old. In regards to her eating her lunch (so you can dose the mealtime insulin), you will probably have to give some direction in writing to the staff. If she eats just half of the carbs of her meal, then just give half the dose. Hopefully your daughter is being seen by a pediatric endocrinologist. His diabetes educators probably have resources to help the school nurse and her teachers. Good luck! (from a retired pharma rep who sold diabetes meds and insulin)
Hi B.! I'm so sorry that you are going through this. My daughter was diagnosed with Type 1 Diabetes at age 1 and my son was diagnosed at age 6. My husband also has Type 1 Diabetes, diagnosed at age 3.
Have you met with a Pediatric Endocrinologist? The endocrinologist and diabetes nurse educators will be a great resource for you as well as for the school nurse.
I would like to know who told you that you could use insulin for 6-8 weeks! I loved Susan B.'s advice for you. We also used the pens when our kids were first diagnosed, but actually drew up syringes from the pens because the needles for the pens were really inaccurate for small doses of insulin. The beauty of using a pen is that you don't waste much insulin at all.
I know that it's SO overwhelming to figure out how to dose for carbs that they have eaten. I feel like my head is swimming sometimes and I have a lot of fear that the kids aren't getting the right dose of insulin or the proper amount of carbs for insulin given, so my heart goes out to you! I wish I could give you advice, but I strongly believe that only a Pediatric Endocrinologist or Diabetes Nurse Educator who knows your daughter's whole situation can advise you on how to deal with the lunch at school issue.
Please PM me any time! I've met a lot of other mom's who are in our situation through facebook and such and it's so nice to be able to encourage each other. Hang in there!
*B., just read your added comments. If you want to try going six weeks, based on your nurse educator's advice, you can go ahead, but if her numbers seem to be consistently high, you may want to consider switching out vials. I really recommend asking for insulin pens. They have much less insulin than a vial and they are easier to draw from, if you ask me. I feel your pain! I remember drawing up insulin in 1/3 unit increments for my baby. It was AWFUL!!!! Hugs!
