Appointments, Schedules and Must Do Lists

The last week of summer is always a harried one. 

Classroom open houses, school supply procurement, health physicals, school clothes shopping, and if you are lucky, one last summer vacation fling.

This year, we managed to get a little of that vacation luck and headed off to Pittsburgh for a long weekend.

Four days of fun and four 'not-so-fun' days of vacation blood sugars.  Up, down and everything in between.

Even though we have been back for a full day, we are still seeing a little bit of that.

Anticipation of starting school, maybe? 

Excitement of seeing friends, maybe?

Crashing from over-exertion of squeezing the last few drops of summer fun, maybe?

In our house, everything basically points to nothing and the great mystery remains of why blood sugars are still up, down and everything in between.  (Might I add, this is probably one of my biggest frustrations, especially as I will soon attempt to explain that two sets of school staff, who will look at me like I am absolutely loony.  Ie, "Why can you not REGULATE her?"

How are your/your loved one's blood glucose numbers?  Are you seeing that great big swing this time of year too?

Out of the Mouth of Babes (Or Remember Charlie Brown?)

Sometimes when I am talking to my children, I feel like this is what they are hearing.

Especially (and I say this with emphasis!) when I list the reasons of why we have to do a site change now and not a million years later (or never as they sometimes hope).




But then, today, my youngest one said this to me:

"Mom!  I need a site change today because I don't want my site to be infected.  Ew!  And I think it looks infected.  And red.  Do you think so too?  Let's do it now. C'mon!"

Huh?

Where in the world did that come from?

And whose child is this?  Surely, this is being voiced from another 40 year-old and not a 4th grader.

Take note!  They really do listen to us.

Well, sometimes.  Anyone want to clean with me?

Sticky Topic - Back To School Shots?

I am not usually a controversial kind of person.  It must be from my up bringing where I was told to do something and I did it-  with no questions asked.

After growing a little wiser, seeing a bit of the world, and of course, having children, some of that changed. 

When type 1 diabetes came along, a whole lot of that changed.

I pretty much question everything to ensure that it is in the best interest of my little ladies.  After all, I am their advocate (and my biggest belief is that everyone living with "something" needs an advocate).

This year, our back-to-school supply list includes the normal school/sports physical but with a twist.  Sixth graders are required in our state to receive a handful of immunization boosters.

For the record, both of my children are up-to-date on their vaccinations.  Normally, I would accept the next set which includes both a varicella booster and a Tdap booster, without too many questions.  I am concerned with the rise of pertussis (whooping cough), the two-week fiasco of chicken pox, and absolutely want to avoid meningitis as I am sure it will not mix well with type 1 diabetes (which is truly my biggest worry!).



I want to alleviate potential situations that will make type 1 diabetes impossible to manage.

From the MDCH website:  "These rules changes are designed to help prevent school-aged children from contracting illnesses such as meningitis and pertussis," said Dr. Greg Holzman, chief medical executive for MDCH. "In the last few years, Michigan has seen a significant increase in pertussis and we hope these rules will help lower the number of cases."

In the years 2003-2007 the average annual number of pertussis cases reported was about 340. In 2008, 315 cases were reported. That number has jumped to 902 cases in 2009, and so far this year, about 560 cases."

OK.  Enough said.  Reading this makes it quite clear that this is one set of immunizations that we won't be missing.

However, there is another shot on the back to school list called Gardasil. 

From the MDCH website:  "Genital human papillomavirus (HPV) is the most common sexually transmitted virus in the United States. More than half of sexually active men and women are infected with HPV at some time in their lives.
About 20 million Americans are currently infected, and about 6 million more get infected each year. HPV is usually spread through sexual contact.
Most HPV infections don't cause any symptoms, and go away on their own. But HPV can cause cervical cancer in women. Cervical cancer is the 2nd leading cause of cancer deaths among women around the world. In the United States, about 12,000 women get cervical cancer every year and about 4,000 are expected to die from it."

Scary numbers, aren't they?  Sign me up.....but wait.  This sounds great EXCEPT this particular shot has a million reported side effects that in themselves will cause issues with maintaining good blood sugar control. 

Reported side effects include dizziness, fainting, seizure like symptoms upon fainting, pain at injection site and generally feeling ill.  One quick search on the FDA website (often close lipped)shows that the shot is now labeled as having AR "adverse reactions".

Google 'Gardasil side effects' and tons more stories of adverse reactions appear.  Hitting close to home, two years ago we even had issues on our little street with not one, but two of the teenage girls that live in our neighborhood.  They each had one shot and (together with their parents) decided based on the immediate reactions that they didn't want a second and forget a third dose!  Side note:  Both girls are doing fine now.

But maybe that is all just a little bit of hysteria from the media, lawyers, competitors and quite possibly, even teenage girls (and boys who are also advised to receive the injection).  It seems as though every vaccination has a few side effects that are quite similar.  That is part of the reason that many healthcare providers recommend taking a pain reliever 15 minutes before getting your shot - it thwarts those side effects before they even happen.

My mind is still open and we will be considering all of the information until the day we go for physicals.  After all, my job as advocate is to make sure that I do exactly that - consider all of the facts.   I want to make the best choice possible for my daughters so they can live long, healthy and happy lives.

If you have a moment, take time to share your thoughts on the blog or on our Naturally Sweet Sisters facebook page. 

Will you be giving your child (boy or girl) the Gardasil vaccination?  Why or why not?

School Tools - Sharps Containers

Without having the need to dispose of multiple daily syringes, my kids requested something a little smaller for school.  Not sure what I could use, I looked around at a few of our local pharmacies and only found the usual quart or gallon size sharps disposal containers.

According to my oldest daughter, "No way am I going to carry that thing around".

Finally, at CVS Pharmacy, we stumbled across these little cuties in the glucose tab aisle. These sharp containers are designed to hold just a few (four, I think) syringes but are the perfect size for the zillion little plastic strips and tiny lancets. 

A package of four is only $3.99.   The best part is that these are purse size and very convenient for traveling to and from school, ball games, or piano lessons.  No more floating lancets or strips at the bottom of a purse or backpack. 

I did check online and it appears that they are only in-store.  Hope this helps someone else from having to carry more than they need to.

Your kids might be extra happy about going back to school.  Well, um, maybe. 

School Rules (or School Medical Supplies for Elementary Kids)

My daughters attend different schools with different care plans, which leads to, you guessed it, different medical school supplies.

Today will focus on what I pack for my youngest daughter who is elementary school. 

Disclaimer, please ignore the many bananas in each shot.  We apparently eat a lot of them!

Up first is a Rubbermaid snack tote.  I love this invention!  For "easy to decide what to grab" use, we actually chose to a clear tub and then opted for the top to be pink. 

Originally, having a specific color of everything diabetes was extremely important as we had two kids within the same school who both had type 1 diabetes.  Since they were both MY kids, I chose to use pink on one and blue on the other.  Believe me, our staff in the office (acting as back ups when our aide was absent) was extremely grateful to know by color which bag of supplies to grab.  It helped to keep all of us organized.

Rule #1:  Keep it simple, sweetie! 

By that, I mean label, label, label!    On the outside of the rubbermaid tote, I attach a laminated card with a picture of youngest daughter and our contact information.  Sometimes, even with the best intentions, a substitute teacher might not understand the purpose of having a snack tote.  This elimates any guess work immediately.

Rule #2:  Pack Like Your Going Away On  A Safari And Don't Know What To Bring

Inside the box, I keep a variety of glucose and alternative snacks.  Even though I am very much about kids first, diabetes second, there have been a few nightmare birthday treats during the course of our experience through pre-school and elementary.  If you think there can't be an "uncountable" carb, I have to tell you that some parents have aced this endeavor. 

The other reason that I like to keep alternative snacks is due to the fact that I might have, um, well, actually FORGOTTEN to pack a snack for my child. 

(hanging my head in shame.)

You know for the regular parent, this is no big deal, but for us, it can mean the difference between staying safe and having a low bg.  Having a box of goodies has really helped and quite possibly, one of those silver linings of having T1D.   My kids never go hungry!

Here is a smattering of what you might find.  I also add water bottles (not shown) and a large container of glucose tabs.   My goal is to pack enough to last through the first semester of school without having to replenish.  We like to bring home the box for Christmas break, clean it, refill and send back in January. 

Rule #3:  Teachers Are Mostly Women And Love Cute Bags


This is our (notice the color - coordination??) pink medical bag.  I send my elementary school child with two - one for the office and one for the classroom.  It is insulated and also embroidered with my child's name (on the other side).  I attach the same laminated picture tag on the handle, just to keep everything consistent and to stop anyone from thinking this is a missing lunch bag and inadvertently sending it to the black hole (lost and found!).

In this bag, is everything that would be needed for a trip away from the building as well as daily testing supplies.  The aide (or her backup) is responsible for taking this bag along.

And as a bonus, teachers love these bags.  They are adorable with the embroidery and the straps are just the right size for carrying around.   Having something comfortable AND cute, makes it a little easier for all of us.

The bag includes the following:  Strips, lancets, alcohol wipes, glucagon, ketone strips, site changes, band aids, neosporin, emergency card, supplies needed request notes, glucose and a blood sugar meter.

I will also purchase a sharps container for the classroom and will dispose of it at the end of the school year.  Last year, we went through two containers and they were very full.  Nice to see that much testing and know that everything is working the way that it should.

Rule #4:  Glucose Is Everywhere Until You Need It

And finally, a new addition this year (thanks to a fellow T1D mom).  I am adding this little guy with four glucose tabs to the zipper pull on my youngest daughter's jacket.  That way, no matter where she is on the playground or a field trip bus or any even outside during PE, she has access to glucose. 



Now, my question to you all, has anyone found something like this in pink? 

Back to School with Type 1 Diabetes - 504 and Care Plan

This is the first of a series regarding back to school with type 1 diabetes.

The first is a Section 504 Plan, which should specifically state what is expected of each school staff member who interacts with your child. The other is a diabetes care management plan, which specifies the orders from your health care provider regarding your child’s diabetes management needs.

Thinking back to school, do you have a Section 504 Plan and diabetes care management plan on file with your school?

A 504 Plan is simply this:

Section 504 of the Rehabilitation Act of 1973 is the civil rights law that prohibits discrimination on the basis of disability; and guarantees individuals with disabilities equal access to an education.

What that means is that your loved one who is living with type 1 diabetes has the right to be guaranteed a safe environment at school.

A 504 plan is a written plan created for students with disabilities (type 1 diabetes is considered a disability under this plan) who require modifications and/or accommodations to be successful in the classroom.

A 504 plan is not an Individualized Education Program (IEP) which requires more specialized instruction.

The 504 Plan is a comprehensive document that is written together by doctors, family and school staff and your school may have guidelines on how this information is gathered. 

Generally, in a good school district (and by good - I mean one that is willing to work with your student and family in order to achieve optimal educational success), writing a 504 Plan will be welcomed and encouraged.  I like to stress to both the school and to my daughters that the point of having a 504 Plan is to avoid any potential mistakes and to keep everything running smoothly.   There really should not be fear on the side of the administration because as an "imperfect" family, we know that despite best intentions, mistakes will happen.  The point is to not have them happen again or again or again. 

Here are some items to consider including in a 504 Plan:

Allowing the child to test blood sugar levels and to administer insulin or to designate a specific school staff member to provide this service or take over the task if the child is unable to do so.  As a point of clarification, the school should provide not just one person to be trained but several as with sick days, your main caregiver as well as the back up, might both absent.  Believe me, it happens!  Nothing worse than receiving a panicked call from the school on a day when you have already to committed to being somewhere else.

Designating a place where blood sugar levels will be tested and insulin administered.  For us, we chose the classroom to minimize the effect of leaving the room and missing instruction.  Some choose the nurses room or the school office.  Whatever you feel works best.

Allowing the child to eat as needed. This includes snacks, even sugar or candy for hypoglycemic episodes and eating lunch at a designated time.   I clarify what types of snacks each year because type 1 diabetes can be easily muddled in with hype on diets for type 2 diabetes.  It avoids having the issue of someone mistakenly thinking they know what is best for the child.

Making extra trips to the bathroom or the drinking fountain.   Or allowing water bottles in the classroom, at PE or even assemblies.

Permitting extra absences for medical appointments and sick days.  We all know that a stomach flu virus that sends some children home for 24 hours can lead to a week in a child with type 1 diabetes.  This also means having the ability to make up missed work or tests due to sick days. 

 Having a plan for school lock downs, tornado drills, fire drills or leaving the building for recess.  One year, my youngest daughter was literally locked out of the building during recess for a lock down drill and had no access to any of her supplies.  We made a plan to carry smarties in her coat pocket just in case. 

This is just the beginning of the list and much more can be added such as what to do on a school bus, in after school programs sponsored by the school, for tests and exams, lunch room and substitute teachers.

For the medical care plan, it should be specified on how to take care of your loved one with type 1 diabetes.

List what times you want your child's blood sugar checked and how to handle the corresponding blood sugar numbers.  (Let me stress the beauty of having a cell phone here - this is the easiest thing to implement and one of the safest ways of communicating any questions.)

All plans should include names of designated staff members trained to recognize and respond to high and low blood sugars and glucagon training if necessary. This would include staff members such as teachers, substitute teachers, nurses, office staff, coaches and bus drivers.

I also keep a detailed list of how my child specifically responds when having a low or a high blood sugar reaction and what steps need to be taken.  Their symptoms are different from others as well as from each other.  For example, one child looks pale with a low, the other one has rosy cheeks. 

In our medical care plan, I have pictures identifying my child, her tester, her insulin pump (so it is never mistaken for a cell phone or an I-Pod, her glucagon and her care supplies, along with an emergency card with her doctor's phone number, our families contact information and neighbors phone numbers.

A lot of work, right?!

The good news is that once you have your 504 Plan and your diabetes care plan done, all you need to do is tweak it for the following year.

And the even better news is that it will provide your child with a chance to enjoy school "kids first, diabetes second".

To further view 504 plans, visit the ADA or the Children With Diabetes website..

To receive a free JDRF Safe at School kit, simply fill out the form located here.

Listening To That Inner Voice - Mom's Know Best

Today was an interesting day.

My youngest daughter woke up and immediately asked if I could take her for a blood draw.

(pause)

I couldn't have possibly heard the words "blood draw" coming from her sweet little lips.  After all, we are still working on ways to reduce her anxiety and fear for each blood draw appointment.

"Yes, blood draw.  I want a blood draw.  I have leg pain and I want it to go away."   As she tells me this, she is rubbing her legs and her right foot. 

She is hurting and it is obvious.

For a fraction of a second, I think about it.  Could it be her Hashimoto's?  We just went through labs not 8 weeks ago and her numbers were perfect. 

One second look at her pinched face and I decide that it is worth it.  I make the calls to the hospital, standing firm in my request for a lab.  It takes a moment as the new on-call fellow isn't sure if having leg pain requires a lab.  Nicely, but firmly, I assure her that it does.

After all, what kid wants a blood draw?

And my daughter is happy.  Relieved to be heading towards relief from the dreaded leg pain. 

We do not have labs back, so I can't say for certain if this will be the answer, but at least I am listening to that inner voice and not letting this sweet girl of mine down.

No matter, she knows that she can count on me and that is the best medicine. 

College - How Mom Has Six Years to Conquer Her Fears

Once a year, we try to take our daughters to our Alma Mater. 

Our family loves this college!  It is where we met, married and even came back with baby strollers; proudly displaying our grandest (and cutest) accomplishments.

Even with that said, the most important reason that we visit this university is that we believe in higher education and the ability of finding your passion in order to determine your career path.

We want our daughters to understand that anything is possible and that all they have to do is study hard to get there.

This year, that realization that college is going to take a bit more effort on all of our parts really sunk in.

As we went into our old dormitorys, our girls giggling with excitement at who will take the top bunk, my stomach did a little lurch.

How will the girls manage this rite of passage that includes late nights, junk food and sleeping in without adult supervision?  And really, that is just the tip of the 18-22 -year old iceberg.  We all know about college drinking.

It all seems overwhelming to think about it.

One of the local mothers that has lived through this college experience gave me the wisdom of starting planning now.

I thought that was a little odd as we have at least six years before the time comes.   After listening to her though, I am now convinced.  A lot of this is really about giving your kids the responsibility to stand on their own before they have to do it.

Little things like teaching the kids to shop for groceries, help make meals, understand good and not-so-good carbohydrates, and even holding a job where they are responsible for being in good blood sugar range.

She even went further in suggesting that kids get involved in their later teens with organizing and ordering their supplies, getting to know their pharmacist and durable medical goods supplier.  Even under  18, kids can still be there with their parents, listening and learning how insurance system works.

And perhaps this is basic, no big deal information that you might have already put into place without living with type 1 diabetes - however, for our kids, we absolutely have to give them the tools that they need to live successfully. 

I thought about the dreaded sleepovers that seem to be happening with a higher frequency now that my daughters are older and how hard it is to manage.  Even this step, controlled in the sense that I am never too far away - unlike college, is important in giving my girls the chance to take the reins for self care.  Mistakes inevitably happen but the learning that follows is great.  They rarely repeat that error and instead, grow more wise and sure of themselves.

At least for me, because I need to know that in six years, I have given them all of the knowledge that I could in order for ALL of us to enjoy the college years with confidence.

Oh, and GO STATE!

Planting a Seed of Hope (or How It Feels To Fundraise)

On Wednesday, we had our annual fundraiser for type 1 diabetes - which I think I can say annual as this is the second year in a row that our dear friend Kari Fitzgerald of Initials, Inc. has graciously offered to donate her entire party profit back to JDRF and our Naturally Sweet Sisters walk team.

It went fabulously.

Family, friends and neighbors arrived not just to shop for beautiful purses and home accessories, but to be part of something bigger.

That bigger thing called, A CURE FOR TYPE 1 DIABETES.

For me, this might have actually been the most emotional of all years.  After all, we have almost reached that epic six year mark.  Six years is a long time.  As I started planning for the party, it made me wonder 'who would want to continue to support us'?

'And would Kari, busy with her own family and business, even be willing to support our goal of helping to find that elusive cure?'

It all seemed so needy.

After all, our girls look happy and well adjusted.  They are active and busy doing all of the things that kids their age love to do.  Our family motto of kids first, diabetes second helps to remind us that anything is possible... with a little extra planning, a cell phone, some fast acting carbs and a meter!

Then, one night not so long ago, my youngest daughter woke up, immediately went to the sink to put her head to the faucet and to start drinking water.  Hearing the commotion on the baby monitor, I woke up and checked her only to realize that the blood sugar number on the pump had skyrocketed in just four short hours past bedtime.  With no basal insulin getting through the site, I had to do an emergency infusion set change with a correction dose of insulin and remain awake for the rest of the night, vigilantly watching for signs of blood sugar safely coming down, but not too far down.

At that moment, I realized that no matter how well our kids seem to be doing, this is not the way that anyone should live. 

And after a tear or two, I got mad. 

Madder and more angry than I have been in a long time.  I did something that I rarely ever do and I started talking about to the rest of the world that does not live with type 1 diabetes.  Putting all of my fears aside that my friends (sometimes I lovingly call them my regular friends) wouldn't think I was over exaggerating the truth of what living with type 1 diabetes is all about.

Because the truth is, type 1 diabetes is hard.  The worst is that fear of the unknown of living with type 1 diabetes is even worse.  My terror level orange never quite goes away.  I am tense and on guard even when I am not. 

And what's more is that doesn't even begin to describe what it does behind those beautiful smiles of my girls.  Type 1 diabetes is an invisible disease, doing destruction without anyone noticing.  It is easy to overlook and to assume that nothing could possibly going on when someone looks so healthy.

My friends, including Kari, listened.  On Wednesday, they showed up in response, not just for the bags or home items (which are unbelievably cute) but for us; our family.  To show support and to let us know that even after six years, no one has forgotten that insulin is only life support; not a cure.

On Wednesday, that seed of hope that I planted so long ago, grew another steadfast root in my heart and the heart of all of the families living with type 1 diabetes. 

It didn't make me feel needy.  It made me feel determined.  We (our family, our friends and our neighbors) will NEVER give up until a cure is found.

Thank you for supporting Naturally Sweet Sisters and JDRF.

And if you want to place a secure online order through 5 p.m. on Saturday, August 4th, the Naturally Sweet Sisters party will be in full swing.  25% of each item ordered goes directly to JDRF which makes it 100% of the proceeds.  I take no offers, hostess gifts or anything else to support this endeavor.  If you would like to have a party of your own, Kari can help and will also donate another $25.00 of each booked party directly to JDRF.   Contact her at 734-308-6701 or www.mybagsrock.com.  Thank you for your support!