Diabetic Friends Action Network Online Newsletter - March Edition (Children's Special) (Delphi Custom Forum 255) This document (c) Copyright 1995, all rights reserved. Redistribution of this document is hereby freely granted so long as the document is redistributed in its entirety (here interpreted as all text which was not automatically generated by software as part of the distribution process); in particular, with attributions and this copyright notice. This issue of The DFAN Diabetes Newsletter is devoted to children. I recently reached my tenth year of being a diabetic and when I think back to all the experiences I've had during that time I have to wonder what it would be like to have experienced those same years as a child. To be taken to the hospital and told that you were almost in a coma because your blood glucose levels were too high. To be placed in the intensive care unit of the hospital with all the machines and nurses watching over you. Facing a lifetime of taking insulin injections and sticking your finger four or more times a day. It's a lot for an adult to deal with. Imagine what it's like for a child. Today children with diabetes have a lot more resources and supplies available to them than at any other time in history. They might be on an insulin pump instead of taking injections with a needle. There are new lancets available that don't hurt as much when they pierce the skin. There are better insulins available for them to use. Needles are finer which makes it hurt less when insulin has to be taken. Although the "tools" of managing diabetes have gotten better, diabetes also brings along a myriad of psychological issues. A child might blame themselves for having diabetes and have low self esteem. Or they might feel uneasy about letting their friends know they have diabetes because they fear being treated differently. A child might not want to follow their diet plan because they don't want people to know they're on a special diet. All of this can lead to stress. Yes, even children can get stress. It's important for the parent or guardian of a child with diabetes to recognize that diabetes is a tough disease for anyone who has it, including children. It's no longer prudent to thing that just because someone is under 18 they don't have feelings and the same pain that adults have. If you have a child with diabetes try to find a support group in your area. Having a group of peers their own age to speak with might be very beneficial to a child with diabetes. Knowing they're not the only one with diabetes can also help the child. To know they're not alone with their confusion and fear can be comforting. If you can't find a support group for your child you'll have to be a substitute. Read as much as you can about diabetes so you can have the correct information for them when they come to you with a question. The stories in this newsletter are for, by, or about children with diabetes. If you have a child with diabetes please read the stories to or with them. It might lead to a conversation that you and your child might prosper from and enjoy. Remember, this newsletter can't be produced without your stories. So please don't hesitate to send them to us. No matter how short, how long, how happy, or how angry they may be, we want to see them and publish them in this newsletter. We want to be "real" and we can't do that without your story contributions. ******************ARTICLE************************ This is an interview I had with a young member of the DFAN Forum on the Delphi Internet Service. Dana is one of the youngest members of our forum and agreed to tell us about her life with diabetes. What's your full name Dana? Dana> Dana Leigh McCall Boltuch And you're ten years old? Dana> Yes. How long have you had diabetes? Dana> I had been sick for quite a few weeks before my fifth birthday, but showed no ketones. Then a few days after my birthday we tested again. Still no ketones. The next day we did another test. Ketones. I was hospitalized that day. I've had diabetes for 5 years. Do you have any brothers and/or sisters? Dana> I have a 6 year old brother. Does he have diabetes? Dana> No, so far as we know. Maybe he will, later in life. What grade are you in Dana? Dana> I just started fifth grade at the Upper Merion Area Middle School. This is my first year at Middle School. Are you the only child in your class with diabetes? Dana> Yes, I am. Do all your teachers know you have diabetes? Dana> Yes, they do. What about your friends? Dana> Most of them already know, or if they don't, they notice my bracelet and then ask what it is for. Do you take anything special with you to school because of your diabetes? Dana> I carry glucose tablets in my bookbag, and drink a juice box before gym, and I have juice in the nurse's office. I also carry crackers in my backpack. Do you have to inject insulin while you're in school? Dana> No. Lunch is the one meal where I do not take a shot. If my sugar is high, I either exercise or my Mom brings som6e insulin. Have you ever had an insulin reaction while you were in school? Dana> Yes, but I rarely display symptoms until I'm very low. And the reactions are only occasional. I mean severe reactions are occasional. Is the food you eat for lunch different from everyone else's? Dana> The answer would be no, except I am a picky eater. If it weren't for that problem, I wouldn't eat much differently than everyone else. What's the biggest hassle your diabetes gives you while you're in school? Dana> Hmmmm... I guess if I have a low sugar in class, that is a pain in the neck, because I have to interrupt class, have someone else come with me to my locker, so they miss class, and i also miss class. Does it bother you when your schoolmates ask you about your diabetes? Dana> No, not really. I just explain, and they accept the answer and surprisingly know something about it, if they did not know I had it. For instance a girl in my gym class asked me about my bracelet, and i told her I had diabetes. She said "You mean you can't have any sugar!? "I said "yes, not much"...etc. How do you think your Mom and Dad have accepted that you have diabetes? Dana> mmmmmmmm....toughie! I think that they have taken it very well, although sometimes I worry my Mom a little bit with my sugars, I think. There might be a lot of kids who read this interview and need help with coping with their diabetes...what advice would you give them? Dana> The advice that I would give them is to make sure that people know that you have diabetes, and know how to care for you in an emergency, but don't draw attention to it. If asked about it, I just answer the questions with out confusing people too much. If I am asked to go into detail, I do, but not every single little thing. I also will give this advise: Deal with the diabetes, but once you have it under control, go on living and don't let it get you down! ********************ARTICLE******************** D* at School, The Time of Diagnosis by Rebecca Stanley I am a teacher at a small private school in San Francisco, and I'd like to tell you about a very special girl, Allison, and how we dealt with the diagnosis of Diabetes at school. It was the end of October when she was suddenly absent from school. On Nov 1st, she came in late with her mother. When I saw her, I picked her up, and gave her a hug, and asked why she had been absent. She told me she had been in the hospital. One of the other teachers then said to me "Allison has diabetes." All I could do was hug her hard as the tears sprung to my eyes and I envisioned the difficult times ahead. Her Mom left her Halloween candy at school, for me to share with her classmates. I sat them down, and explained that Allison was sharing her candy with them because she has diabetes and couldn't eat all that candy. I told them that it was a disease she would always have, but that they couldn't catch it from her. That she wouldn't be any different than before, except that she couldn't eat very much sugar and would need extra snacks. During the next couple of days I found that I had a sixth sense about diabetes. One day early on illustrates this well. Allison's mom came that day at lunch, tested her, and gave her a shot. She didn't eat much lunch, because she wasn't hungry, and went and played. At the end of the walk back to school she told us she felt tired, and kind of funny. That's when I took over. I took her in to the kitchen and pulled out her lunch. I gave her the yogurt and sandwich after which she felt better. It turned out to be exactly what she needed, her mom later told me. This did a lot for my confidence in dealing with diabetes at school. Over the next few days I was introduced to blood glucose monitoring and the signs of low and high blood sugar reactions, and how to deal with them. Allison tested daily at school, and lot of teachers got a lot less squeamish about blood! None of the other children treated Allison differently, and they never got jealous of the extra snacks and getting to leave class at the odd times to test, or if she felt low. We all got a lot more comfortable, since we learned how to read the simple chart her mother gave us. A blood glucose reading of less than 80 meant LOW, over 180 meant HIGH. Once we had dealt with some lows and highs we became confident that dealing with Allison's diabetes at school would not be a problem. ********************ARTICLE******************** Getting Ready for School Beyond Buying Notebooks and Erasers by Laurie Nelson We had a head start getting to know the teachers, when my daughter began Kindergarten 4 years ago. She had just finished a week at ADA Daypoint Camp and discovered that her enthusiastic camp counselor would, in a couple weeks, be her student teacher for the year. Both were excited because they would each know someone going into a new situation. As parents,we were excited and a little relieved to know that our daughter would have a teacher who also had diabetes. As school grew closer, I called the school district to inform the district nurse that we had special needs and that we would like to meet with her, the Kindergarten teacher, and the "health clerk" who managed the health office before school began (It's a good idea to include the gym teacher, if possible). We had no problem setting up the meeting for the week before school started. I began checking different sources for ideas and suggestions to prepare for the meeting. Besides gathering information from ADA and JDF publications, I turned to some helpful people on the PRODIGY bulletin boards. The ideas that follow have been fine-tuned over 3 years to meet {our} specific needs. Use them as a guideline and make adjustments where you need. After calling the school and setting up the appointment with the teachers and nurses, the next call was to the school bus company. If you child will ride a bus, it is important to make sure the bus company and the driver know about your child's diabetes. Inform them that he/she may need to have an occasional snack while on the bus to maintain a proper glucose level. Ask if you can supply a quick-acting glucose treatment that can stay on board the bus in case of an emergency. Find out the pick-up and drop-off times for your child so you can begin a similar schedule at least a week before school starts. That way you may be able to find problems with your child's schedule that lead to high or low blood sugars. When meeting with the teachers and nurses, find out about scheduled snacks, lunchtime, gym class and recess. Our teachers are usually working on their scheduling that week before school and have been willing to make small changes in their schedule to meet our needs. Again, begin changing your child's schedule ahead of time to prepare for things like waking up earlier and different mealtimes. (With our daughter, everything was at least an hour earlier. One year lunch was so early she needed 2 afternoon snacks). Here are some questions to think about asking the staff: -Has your child's teacher had any experience with Type I diabetes? -How frequent is Diabetes in the school and district? -Does the school have a glucose testing meter? Is your child familiar with it? Can the school nurse help with necessary training? Or can you have your RN Certified Diabetes Educator or pharmacy help? Does your doctor need to write a prescription for the test strips? -Who is responsible for its maintenance of the battery in the meter? -Where will your child be testing? Is he /she able to test and interpret the results without help or does your child need supervision? What are the school's policies about testing in the classroom? Can they be changed to meet your needs and desires? -Is it possible to keep a supply of snacks in the classroom? We found it was easier to send a box of crackers and a box of fruitsnacks with our daughter to keep in her room. The teachers have been willing to give up a small amount of space in their cupboards. -If your young child doesn't tell time, can the teacher help by reminding your child about snack? We bought our daughter a wristwatch with an alarm and set it for afternoon snacktime. -Can your child get milk from the cafeteria during the day? We keep track of the number of days our daughter has extra milk and write one monthly check to pay for it. Pack a box of diabetes supplies to keep in the Health Office (sick bay). Ours includes: Blood glucose test strips Lancets Lancet device (finger poker) Cotton balls Urine ketone test strips Glucagon with 2 syringes rubberbanded to the box (don't tape them on because the tape peels off the syringe markings!) Treatment for hypoglycemia (sugar cubes, glucose tablets, gel glucose -or gel frosting in a tube) Protein and starch snack (crackers and cheese or peanut butter) Pencil and paper (or record book) to record the day's test results to take home daily. I typed up an outline with MY rules and expectations and make copies for everyone at the meeting. We read through them together and discuss any questions that come up. Our sheet is set up like this: Child's name Teacher and grade Date (last updated) Emergency phone numbers: mine, my husband's, a neighbor, the endocrinologist, and our family physician. 1) (Child) needs to test: -daily before lunch -if symptomatic for low blood sugar* -when ill -before boarding the bus if any snack is forgotten. *If symptomatic, check blood sugar in classroom rather than sending her to the Health Office for test OR have her escorted to the Health Office by an adult. 2) Normal blood glucose levels for (child) are ____-____ mg/dL. 3) Symptoms of low blood glucose (hypo- glycemia) are: -shaky -pale -quiet/personality change -weak -headache 4) Symptoms of high blood glucose (hyper -glycemia) are: -headache -stomach ache -frequent urination -thirsty 5) If blood sugar is: Below 80 mg/dL:give treatment of (# of tabs) Follow in 10-15 minutes with (protein & starch snack) OR regular lunch. Call Parent. In case (child) may become incoherent or pass out due to low blood sugar, Call 911. Give glucagon by injection and/or place small amount of gel-glucose in between cheek and gum. Lay on her side. Call Parent. -Over ___mg/dL: continue with regular activities -Over ___mg/dL: may need to use the rest -room more often and may be thirsty for water. This is one way for the body to dilute the high amounts of sugar in the blood and is an important self-regulating factor. -Over ___mg/dL: test urine for ketones. a) If positive, restrict physical activity and call parent. Recheck ketones in 1-2 hours. Call Parent. b) If negative, may continue with regular activities. 6) Mealtimes: -(breakdown each meal, ie. 9:30am snack is 1 starch, lunch is...etc.) *It is important for (child) to finish all of his/her lunch. Staff should encourage her to eat at a rate to keep up with her class. However, if she does not finish before the class is excused for recess, she needs to stay in the cafeteria longer to complete her lunch. 7) Illness: -Test blood sugar -Test urine for ketones -Call Parent 8) Let parent know when there are about 5 blood or urine test strips left in jar to allow enough time to reorder from pharmacy. For each new bottle of strips used, the _____ monitor must be recalibrated. (For now, my child needs help with this procedure). I also made a Diabetes Flow Sheet. In an emergency it is helpful to have every step charted out in an easy diagram, rather than having to scan a sheet to determine the procedure. Our School District Nurse was so impressed with it, she made copies and sent them around to the health offices of the other schools. Again, thanks to a helpful person on Prodigy. Again, these are just some ideas to prepare your family for the upcoming school year. If you meet with any opposition at school with your child's health care, work your way up the ladder. Contact the supervisors, the principal of the school, the ADA and JDF and your child's doctor. As our doctor explained it to us, most schools would rather bend over backwards to accommodate our families than to be in the media because of an avoidable 911 call. I sincerely hope that these ideas help ease your family into a successful school year. ********************WORDSEARCH PUZZLE******************** S R E T E M C A R B D U L O R T N O C R I N S U L I N J G B A T C E J N I L X L B E T A T L U G T V E S P A N C R E A S T T F A O P I Y U T I O F S R D F G M R C D E W A K A O Q I T Y P E L R P U M P BETA CARB (Carbohydrate) CONTROL DIET DR (Doctor) DIABETIC DFAN FAT GLUCOSE INJECT INSULIN METER ORAL PUMP PANCREAS STRIP SUGAR TEST TYPE ******************************************* If you'd like to send a comment or question to DFAN send it to: BELVE (Dephi), BELVE@DELPHI.COM (Internet), XJMV62A (Prodigy), YASURU (Delphi), SO RANGER (America Online), WXUD99B (Prodigy) If you'd like information on how to join DFAN's online support group just drop us an e-mail and we'll tell you how to join and get FIVE FREE hours so you can look around and see if you like it.