Your Child with Type 1 Diabetes is Starting School

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 Type 1 Diabetics First School Year

The first year of school is approaching for your child. Going to school is such a joyous milestone for you and your child. And for the diabetic family it can also become very overwhelming for the parents. As a parent you have been in control over all the blood sugars, injections, food intake, and what to do during exercise (recess). Now it is time to start school, kindergarten is right around the corner and what do you need to do? To start you need to talk to your diabetic educator and gather information and orders from the doctor.

Getting Prepared

First you want orders from the endocrinologist. Those orders will come need to go to the school nurse about 2 weeks before school starts. Then you will meet the school nurse. At that time she will review the orders and talk to you about your child. This helps the nurse make a care plan (this will be the same for what you do for your child at home-our book can help keep all of this information sorted easily to discuss with the nurse) for your diabetic. The next meeting will be with the teachers and nurse. Before this meeting you will want to make individual care packages for each teacher. Things to have in this package is a description of your childs hypoglycemia and rescue medications like juice or smartees.

This is to ensure when your child has a low blood sugar during class then the teacher can treat in the class room if needed. Also your child should have some kind of sugar in his or her pocket and know what to do with it. Sometimes walking to the nurse is not appropriate especially with an extreme low blood sugar. Also specify that your child is never to walk to the school nurse unattended with a low or high blood sugar. The child needs accompaniment by another adult, not another student.

Next  is important to know what your services your school[provides. Some schools have a full-time nurses or a health aid directed by a nurse.  Some aids are able to give shots and some are not able to give shots (this will depend on the state and city in which you live). Most schools will have a diabetic plan in place at the beginning of each school year to help guide your childs care. If you child will at school over the lunch hour you will need to decide if your type 1 diabetic will eat sack lunch or school lunch. If you decide on the school lunch the school can provide the carbohydrate count for the meals served. With sack lunches you should send the carbohydrate count with lunch. Writing on a plastic sandwich bag or disposable container (I know it is not green to use disposable but very easy for carb counting) for each object in the lunch. Assigning carbohydrate counts on each food piece allows your child some flexibility with what he or she will eat.

504 Plans

Finally, there is the 504 plan. A 504 plan is a legal plan put in place for diabetics (or other medical reasons). As a parent of a type 1 diabetic it is your right to use a 504 plan for the treatment of you diabetic child during tests, standardized tests, during class period so they are not unfairly treated when it comes to school work and missing class time. 504 plans are not always necessary during the first few years of elementary school. As your child progresses through school this may become more important with standardized testing. The school sets up the 504 plan and you will meet with the school consoler, nurse, and any teachers you deem important.  During this meeting you will decide what incluison criteria and all party to the meeting will agree upon the academic plan.

All of this feels like more than enough to remember for the first year of school. Once you do this it gets easier (Diabetics will go through the same process each year).  Most schools have had a type 1 diabetic before and will navigate you through this process. If you hare having issues with the school enlist your diabetic educator or endocrinologist for help. They will either help you directly or get the right person to help you with the school. Once all of the medical details straightened out, then as a parent you can enjoy sending your child to kindergarten for the first and last time. Those milestones are precious.

The ins and outs of insurance

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3a118a835fd0d6d253f49acc9ed5697aA Bedtime Story: Insurance Heartache and Stress.

Knowing what the insurance will pay for and what they won’t and when the insurance covers everything.

My lesson the hard way.

Recently my son’s continous glucose monitor (CGM) stopped working.  And my descriptions of  stopped working is it would not charge, blink or the OK green light.  So of course I went about calling our CGM company for the arduous process of replacing the CGM.  After a long conversation we decided (the company rep and myself) that it was truly dead. With this fabulous information the next step was to await the doctors new prescription. Obtaing this elusive prescription seemed far reaching. First I had asked for the company to acquire the needed paperwork form the physician and not the diabetic educator, as we had not visited with her recently. However the company decided to go about this in their own way. They proceeded to contact the educator and she would not fill out the paperwork because she had not seen him. Now The educator we have seen in the past is FABULOUS; simply my son really prefers the male doctor. Because of this we then played a waiting game from November to January. And so the story continues.

While we are in waiting questions such as does a CGM make or break a diabetic day? Really, why not just go old school and just test all day long? But for my son it can make or break his day and week and month. His blood sugars tend to be wildly all over the place causing him to test his sugars more than the 8-10 times a day. Also he has recently started in a running club and driving.  So having a CGM that will shut off if he cannot detect a low blood sugar is a life saver, literally.  Besides saving his fingers from repeated testing. Moreover, he is able to simply look at his pump prior to sitting behind the steering wheel, at schimagesool, or before running. His CGM can make or break his daily management of his diabetes causing us to miss it horribly.

With the passing of months of mourning we have finally heard from the company!YAY! There is no paperwork form the physician. UGH. The holidays are here! I have called the physician’s office, they already have the paperwork done and faxed back; and we finally have the prescription to the company, creating a no out of pocket payment with our insurance. SIGH–calm and relief set begin to take over. Or so we thought! A few weeks pass. Mind you we are in mid-January, and the company calls me and states they just received the fax from the doctors office. Huh, you mean the one that was faxed in December? (You thought this tirade was complete and our family’s stress was finalized.) This then lead to a 2 hour phone conversation with the company. Me stating and restating that I was informed by the doctors office they had confirmation recite from the fax before the new year began. The representative and manager stated their paperwork demonstrate otherwise. What is a family to do!

The End of the Story

The company did not have the paperwork in hand before the end of the year so it is to be billed on 2016 insurance! UGHHH. Lesson learned (The financial lesson). Don’t wait for the company call and harass everyone until its done right! He has his CGM and all is now going smoothly and with lots of basal rate changes, very few lows and a green light indicating all is well with our CGM.

Moral of the story

Know your insurance and the companies you are working with. you can save money in the end and the ability to maintain a full head of  hair at the end! Happy New Insurance Year!

 

The “Weekend Away”

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The Weekend

Here it is our first real out-of-state vacation without the kids.  My mother-in-law took them for us while we scooted off to Seattle, WA for five days.  This would mark our first “BIG” trip without the kids.  We have had others: to the mountains for a night or they have scooted over to friends’ houses overnight.  But to go out-of-state without me being in complete control of Quincy’s diabetes for five days (and he was not at camp)?  My feelings: excited, scared, curious to see if I could do it and not go psycho crazy and need to control everything! So I plotted my obsessive need to control all the details.spaceneddle

The details

Five days at grandma’s house.  She had a mini-trips planned with the kids.  This meant I needed to plan and discuss what is expected for Quincy when you are more than 30 minutes from home, staying in a hotel, and then going on a fabulous train ride (which was way more exciting for my kids than going to some silly city!).  I, of course, have the “travel overnight” and not being at a hotel down to a “T” with skiing.  But I actually had to think my steps through and decided what a non-routine caregiver would need to do for a fun-filled grandparent weekend.

The steps

We do use our book for our son.  Now that he is a young teenager he does quite a bit on his own with lots of supervision.  He needs his travel bag and then several smaller bags for the train ride.  The travel bag consists of several pump site changes, insertion device (it is never fun to leave this at home), insulin, Lantus (just in case the pump fails all together), syringes, test strips, glucagon (in every pocket imaginable), alcohol wipes, sugar, and an extra glucometer.  That is the big bag.  Now experience has taught my family that taking one to two extra glucometers is a must, and keeping things in several places is a must.  So my mother-in-law had a baggie with a glucometer and sugar for her purse, and my son took the site change (only one) in his diabetic bag on the train. Then came special training about keeping all diabetic supplies from being too hot or too cold in the event they may not function right.

The result

We had an exceptional time in Seattle.  The kids had fun with my mother-in-law.  Mobile phone communication was mostly about our trips and very little about blood sugars until the last day and that will be the next post.  My mother-in-law utilized the book when she needed to and it kept everything running smoothly.  It’s amazing how a full scope of knowledge helps care for your child! Everything she needed to take care of Quincy was right in the our book, “Type 1 Diabetes and Babysitting: A Parent’s Toolkit”.

Diabetes educators: Who are they and what do they do?imgres

Likely every type 1 child and their families have seen an educator: at the hospital, for insulin management, to start on a pump, or for school paperwork.  But what do you really know about your diabetes educator and what are their backgrounds?

The Definition

According to the American Association of Diabetes Educators (AADE):

A certified diabetes educator (CDE) is a healthcare professional for diabetes or people at risk for diabetes with behavioral goals to achieve better clinical outcomes.  So what exactly does that mean? The idea is an educator helps a child with diabetes (or family members, in the case of children) with eating habits, exercise habits, insulin dosing, sick day management, and basically the day-to-day activities for a child that affects blood sugars and A1c levels.  A diabetes educator’s background is varied.  He or she may have a background as a registered nurse, a nutritionist, a pharmacist, a physician, or a mental health professional, to name a few.  He or she must take a certification exam to become an educator.  The basis for their education revolves around what the AADE calls the 7 self-care behaviors:  healthy eating, being active, monitoring and taking medications, problem-solving, healthy coping, and reducing risks.

Who Pays to See a CDE

Typically a person with diabetes can see an educator more often than the endocrinologist; however, this is based on insurance coverage.  Insurance coverage for an educator will differ between plans (so check your insurance plan out).  Usually you need a referral from the endocrinologist.  After the referral is made you can typically see the educator more often than the endocrinologist depending on the reason for seeing the educator.

How do you use your educator in your community?  Is he or she helpful or is the endocrinologist you see more helpful?  Have you seen your educator lately?

Here is the link to the American Association of Diabetes Educators with a full-page on what an educator is:

http://www.diabeteseducator.org/export/sites/aade/_resources/pdf/Definition_Diabetes_Educator.pdf

What Exactly Does a Certified Diabetes Educator Do?

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Type 1 Diabetes and Growth Spurts

Growing children seem to eat parents out of house and home.  There is never enough food for them!  For example, my type 1 13-year-old is eating me out of house and home!  And the result is a three-inch growth spurt about every three months.  The problem (beyond the obvious sugar control!) is that he wants to eat all day long.  Waiting until the next meal might as well be giving him a “death sentence”.  The recommendations we received was to eat every two hours.  He is able to have an entire meal every two hours.  I thought what a great compromise!  But he still wants to graze all day long like a cow in pasture!  So I try to help him eat good food and sometimes fun foods to encourage eating well.

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So why is it a big deal for him to eat constantly?  It has to do with insulin, whether via shot or pump.  Eating more often requires insulin.  Each time he takes insulin he is stacking it on the last dose and essentially giving himself mega doses of insulin, setting himself up for a low.  Rapid insulin like Novolog or Humalog have about a 3-4 hour active time in the body. The insulin works quickly but does not leave the body quickly.  It basically means we can expect many and frequent lows.  Eating every two hours helps with this but does not necessarily eliminate stacking of insulin.  But for us it works.

Growing and grazing.  Eat, beef up and grow taller.  Type 1’s can navigate this easily without negative consequences.  Go forth and chow down!

Portrait of a boy holding fruits

Growing and Grazing

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The Barbara Davis Center for Diabetes

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The Barbara Davis Center in Denver, Colorado has been a center for all people with diabetes to receive care. The center began as a way to help underprivileged children with type 1 diabetes to receive care and supplies. Over the years the center has developed and written several books and added programs like classes for grandparents, for families of persons with diabetes.

One popular book that you may be familiar with is Understanding Diabetes by H. Peter Chase, otherwise known as the Pink Panther book.imagesThis one of the books in the Bag of Hope that many children with type 1 diabetes receive when they are newly diagnosed. What a great book it is!  The Pink Panther book is an essential reference to understanding all things diabetes.

The Barbara Davis Center mission statement is:

Our mission is to provide state-of the-art care to children and adults with type 1 diabetes and to teach our patients how to prevent or delay complications. Our research is devoted to finding prevention, cure, and most effective treatment of diabetes and associated disorders.

Recently the center has combined with the University of Colorado Health Science Center.  They still provide easy access for care and the variety of programs the center originally created.  The Barbara Davis Center is still acting as a funding raising entity. You can find out more at:  Barbara Davis Center.

 

Pro Cycling challenge:Stage 4

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Here in Colorado we were lucky enough to have the Pro Cycling Challenge, Stage 4, ride right through our neighborhood! The most exciting part was Novo Nordisk Team Type 1 came right past! I thought I would share the pictures I took of the warm up lap! Enjoy!

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Toes in the Sand and Pumpers

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Its summer time and most of us are heading out for a vacation. Some to big cities, some to forested mountains, some to lakes and camping. And then there are those of us headed to warm sun, sand and ocean! Think of it, seeing to the bottom of the ocean and the fish swimming and surfing, sailing, and sand castles! But wait….

sandcastle

….There is insulin and insulin pumps and strips and all that fun stuff to figure out! Hot weather and taking the pump off to play in the water and then putting it back on every two hours and trying not to get sand in everything!!! Here are some tips to save the sand everywhere (and if you are at a beach, have been at any time in your life then you know sand just sticks to everything!):

1. If your child or self uses an insulin pump. always put the site cap back on. If sand gets into the site then it is site change time.

2. Have a dedicated cooler for only insulin supplies, (insulin, strips, sugar etc )that is large enough sand will have a hard time jumping in!

3. Consider going back to shots for the time you will be at the beach. No pump, only glucometer, and strips to worry about.  If doing this connect with you Diabetic educator and review what basal insulin and an insulinshot schedule.

Our book has all of the equations to determine correction factor and insulin needs for food as an easy resource for your beach travels!

While at the beach have fun and keep you r toes in the sand for those of us by the Rocky Mountains

What Diabetes Apps Do You Use?

Technology is great! It allows us to keep connected with other people in our lives. For example, It allows my teenager to contact me always. So when he is over at a friends or out with school activities he texts me his blood sugar numbers when they are out of range. So my question is what apps for your smart phones do you use for your type 1 diabetic?

Type 1 Available apps

There are so many apps available for use. Some seem perfect for a type 2 diabetic because  they help with meals and weight loss. The few type 1 diabetic apps I have reviewed and looked at are ManageBGL, My care Connect, and Go Meals or Calorie King. ManageBGL website talks about real-time Blood sugars (a sitter/child enters it and it gets to the parents), predictive lows or highs, ans so much more. What a wonderful way for parents to help easy an overnight with others. Then there is My care Connect. This one allows information from school, child, parent to communicate back and for as well as with the endocrinologist. I have not had the chance to use either one but have look at both closely.

 

Then there is the applications that help you carb count:Calorie King, GO meals. We utilize apps and books. Usually just what we can get our hands on fastest. They have allowed my teenager to feel more comfortable counting carbs.

Pros and Cons

Apps help so much and in so many ways depending on which app you decide to use. Apps need good cell service or wi-fi to get the information live. Don’t get me wrong I utilize every thing I possibly can to help me with my sons diabetes management, but there are times a book or a phone call is easier or more reliable. So a mix of technology and old school paper is good.

Knowing when to tell your child or other adult if the app, phone call or consulting a book, like ours “type 1 Diabetes and Babysitting”, will be the fastest or safest method. We can rely on technology until it does not work then we need to rely on paper. Plus there are things that are tangible like having a flow chart right infornt of you to know management. Let me know which do you prefer: paper or a screen?

Type 1 Diabetic Apps

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Type 1 Diabetes and Friends

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Friends can be a tricky thing with your type 1 child. Children want so badly to fit in with others, to have a group of people who accept them unconditionally. Type 1 diabetes can make your child have the impression of being unaccepted. Now not all children feel this way. Many children have a self-confidence that is made of iron and other children determine their confidence based on others. And let’s face it: other kids can be mean and use diabetes as a way to pick on and bully your type 1 child.  As parents we want to embrace our children, keep them safe, and have them feel confident no matter what and make all of their ills disappear. If we, as parents, could do that we would wipe out diabetes all together with our wants and desires.

Since we cannot wipe out diabetes, how do we help our children to be comfortable with this lifelong disease?  I believe it depends of your child’s age. With a middle, elementary school and younger child, parents need to enter the classroom each year and talk to the class about type 1 diabetes. Joslin has a great handout to guide you as a parent through this at http://www.joslin.org/info/classroom_presentation_on_diabetes_for_elementary_school_age_children.html   Beyond talking to the class, you can also enlist the help of the friend’s parents. They will need to know about your child anyways so why not have them help talk to their child about childhood diabetes? The friend’s parent may know how to talk to their child about specific for their child.

Then with an older child,  he should start to learn to talk to their friends about Type 1 Diabetes. This will help two-fold. First, it helps your type 1 child learn about their disease a bit more because he or she needs to talk about Type 1. Secondly, I strongly believe that encouraging your child to discuss this makes them more confident about themselves. When a child becomes more confident they are more likely to advocate for themselves. With advocation less childhood bullying could occur. Kids don’t tend to pick on kids that are confident in themselves. Self-advocation is a lifelong habit.

All T1D kids need to eventually be able to discuss how their body works, why they need insulin, to carry sugar, eat often, and sometimes feel cruddy because of their sugars. Teaching your child while they are with you by talking to the classroom and their friend’s parents about type 1 diabetes will enhance your child’s ability to make lifelong habits to talk and discuss about their diabetes.