Monday, October 9, 2017

Diabetes and Halloween

Recently, our small community received the news of three new families now living with T1D.  As always (now through a cure) my heart not only breaks but I also feel this long inspired determination to help each newcomer adapt and adjust to the best life with T1D possible.  Because I am on a kick with Twitter hashtags @natsweetsisters, these are a few of my favorites: 
#togetherwecan #improveT1D 

They kind of ring a perfect bell, right?  The girls and I think so too!

Along with that, I have spent over a decade testing the analogy that within T1D, kids are first and diabetes is second.  Always.  I firmly believe that we can live our lives in the fullest manner possible if we remind ourselves of that cherished motto.  There are no limitations when you decide how best to fit T1D INTO YOUR LIFE and not, fitting your life into T1D.  Wash and repeat.  It's a powerful, cleansing mantra! 

And it works well, especially during the Halloween holiday madness. 

To begin with, just ask yourself a few questions.

1.)  What was Halloween like before T1D?
2.)  What would you like Halloween to be like after T1D?

My guess is that most of us, would enjoy a carefree Halloween just as it was before T1D.  The great news is that is VERY doable!  The lesson that I learned regarding food and holidays, is that to children, it is NOT about the candy.  It is about the gathering, counting, bragging and admiring of the candy.  On Halloween, kids are working to amass as much candy as quickly as possible.  If you have ever observed the evening shenanigans, you might have noticed costumed children literally running from door to door.  The little (and big) kids barely slow down in their efforts to ring as many doorbells as possible.  It is one of the reasons that masks are not as favored; the kiddos need to see to be able to run while avoiding sprinklers, lawn art and benches.  The same spirit of excitement holds true at fun Halloween style carnivals and Trunk-or-Treat events. Kids run and parents yell, "Slowwwwww down!".  I don't know about you, but mysteriously, on Halloween, my kids could never hear me. 

Once the speed candy gathering has ended, there is often a need for some of that beloved candy.  Blood sugars that spiked in excitement, start to regress and drop as blood sugar moves down.  A well timed sugary treat is often wonderful and as parents, the value of the gathered candy increases.  Suddenly, the candy isn't as much of a nuisance as it is a refreshingly 'free' replenishment of low blood sugar goodies.  Thank you to our friends and neighbors for helping out! 

As you wind your way back home, the tabulating and bragging begins. Many kids do not want to even eat the candy at the start as it will take their stash of 45 snickers and 26 kit kats down by one.  After a round of selfie candy pictures, the kids like the idea of knowing that it is their candy and will place it into a special plastic container marked with their name and attempt to hide it within the family pantry. 

You may notice the volume increase within your house.  Giggly stories may be shared about the family that gave handfuls of full size candy-bars or about the one odd house that passed out coupons.  Soon after, quiet resumes and bedtime will ensue and then, Halloween will be another happy memory just as it was before T1D. 

Here are a few fun ways to continue to enjoy Halloween:

1.)  Print up Halloween Carb Candy Counts and bring them along as you Trick-Or-Treat.  I also like to tape a set onto the plastic container or bag that will hold the candy within the pantry before we return home. That way, everything is ready to be stored and if someone wants to eat it without me, I have a much higher chance of seeing an appropriate bolus. 

2.) If some of the candy is not suitable, make sure you clearly discuss the reasons with your child (Chewy candy for braces, nut candy for allergies, scary weird serial killer candy that should be thrown out).  Try not to say "because of T1D".  After all, we know that all of our kids can eat a healthy, balanced variety of foods, which for kids includes the occasional sweet treat. 

3.) If a Halloween Witch came to take the candy BEFORE T1D, then a Halloween Witch may want to come after T1D.  The best way to make a relaxed and fun evening is to follow the pattern that you had prior to diagnosis. 

4.) Serve a well planned meal before heading out.  Running around the neighborhood takes a lot of energy.  As part of the festivities, our family likes to enjoy a fun meal of mummy hot dogs, ghost cheese shapes and crackers, veggie monsters (use toothpicks to create fun characters with broccoli, olives, carrots and celery.  Cream cheese makes great eyeballs) and lots of ghoulish water - black water (our Kroger store carries this) is a fun treat for setting the theme of the evening. 

As a bonus idea, if your loved one with T1D is using multiple injection therapy, having food available for a meal after the trick-or-treating is a wonderful way to blend the carbs of candy into the carbs of dinner.  No extra injection needed.  Going forward after Halloween, it is easy to add a few treats to each mealtime bolus injection to avoid extra shots too. 

5.) Have friends join in the fun.  This is a neat way to help show the world that T1D is limitless, even on Halloween.  Your loved one with T1D can do anything that they want!  Including enjoying a caramel apple or a butterfinger.  Or three.

Happy Halloween!

From the Naturally Sweet Sisters

Friday, October 6, 2017

Sometimes It's Not About Diabetes But It Always Is

Image may contain: one or more people, shoes, tree, grass, sky, outdoor and natureMy sweet girls are having the time of their lives during this fall season of golf.  Our oldest was blessed with conquering her challenging 'flop shot' and suddenly, her score dropped from low 90's to upper 70's.  (Side note: If you do not follow golf, getting rid of points means that you are doing great!) At the same, our youngest found herself placed in the number 2 position as a freshman on our varsity squad.  At 13 years old, she is competing with senior girls and holding her own, often besting her partners and pulling in top 10 rankings.  It is quite a fun moment for a parent to stand between greens and watch one daughter, then the next and feel nothing but joy as your children play with passion.  And did I mention that I really do not even play golf?  Yep, this is one skill that is not mom driven.

Last week, their hard work culminated in a team SEC Conference Championship - a first for their school in many, many years. On top of that, our oldest daughter was Low Medalist for not only the conference tournament but all of the tournaments combined - earning the most points in two divisions (Red and White).  Our youngest daughter proudly came in 5th over all, earning a medal too. The local newspaper took note and interviewed their coach, plus both girls. They also took a few pictures and marketed the article under 'Sister Rivalry', which of course made all of us laugh as never have two sisters been more opposite.  These two are best friends.

The conversation for the interview focused entirely on their golf game.  Readers wanted to know how they got their start, why they chose golf and how it has helped them to learn other skills.  Besides a random picture that cleared showed their Dexcom and infusion sites, there was no mention of golf.

And that was fine.  Sometimes it is not about T1D. 

As soon as the article hit the newstand, I happily 'shared' on a few social media pages amongst relatives and close friends.  With a hearty congratulations from all, there was also confusion as to why T1D wasn't mentioned.  After all, playing 5-6 hour long golf tournaments requires a deep dedication to staying on top of blood sugar management.  One living with T1D can't just forget about the highs and lows despite an activity or event.  Our JDRF Outreach Chair even sent me an email and said while she loved seeing the girls in the paper, she just wished dearly that there was a mention of T1D to inspire other young athletes and parents.

Talking to the girls, I asked how they felt and if they wanted to share that part of their victory; the part of managing the game of T1D.  Without hesitation, they whole-heartily agreed and said they would share with anyone at anytime as it was just as important to know that anything was possible while living with T1D as it was to do their very best at golf.  As my youngest said, "Your dreams don't have to stop because of diagnosis.  I dream all of the time!"  Her sister chimed in and said, "And look at our dreams coming true." They felt so strongly about ensuring that T1D was present and acknowledged for others as this summer, they became involved with the Diabetes Sports Project to showcase how golf and T1D can work well together.  As the only female golfers, they take this role seriously. It's hard enough to get girls involved with golf, but throw T1D into the mix and for many, it can be overwhelming.  Sharing their success will hopefully overcome both issues.  

This week, a second article will be published in which the focus is not only their amazing golf skills, but their efforts toward T1D management, their dedication to the T1D community and what they hope to accomplish as they grow older.

I can't wait to share it with you all as positivity and inspiration is contagious.  Even I feel reinvigorated with T1D care.  It's hard to manage from the fringe. This little boost has helped me too, even though I didn't think I was overly focusing on it.  As a mom though, it's hard not to.  In the deep space of my brain, it is always there.  See, sometimes it's not about the T1D, but it always is.

* To read the article about the SEC Championship, check out this link!
**To learn more about The Diabetes Sports Project and their Champions, including our NaturallySweetSisters, check out this link!

Wednesday, September 13, 2017

The Long, Winding Road of Diagnosis

<b>Autumn Path</b> - Other & Nature Background Wallpapers on Desktop ...

It's going to be an early fall.  

The air has been cool the last few weeks and I can already see leaves of russet, gold and orange co-mingling with our evergreens.  I love this time of year and especially enjoy the excitement of autumn with two teenagers in high school.  These are our busy years with school, sports and extracurricular activities and I am trying to savor each happy moment.  

Except for certain rare times in which I would rather experience once and then, tuck far, far, far away into the deep corners of my brain.  Families like ours understand that delicate balance of medical needs with everyday teen needs.  I have said that before and still, I keep trying to find the best angle, the best approach for the best possible overall outcomes.  As we go further into living with Type 1 Diabetes, there is less of a clear path for all of the other concerns that pop up, especially when we are not sure what we are looking for. 

A few weeks ago, both girls had their very first endoscopy appointments.  

Prior to their appointments, we had met with their pediatrician who had noticed various symptoms of weight loss, GI troubles and of course, the new (and oddly, amazingly rare) diagnosis of solar urticaria in our youngest.  Reviewing the symptoms, plus visually examining both girls, she felt it best to refer us to a gastro-intestinal specialist.  The timing was the beginning of school and for the first time in eleven years, I looked at our schedule and decided that if 'kids were going to be kids first', than something had to give - so I cancelled our quarterly endocrinology appointment.  That left me with a bit of guilt and the feeling that I wasn't balancing our world in the way that perhaps it should.  Shouldn't medical needs always be first???? Except this time, in my heart, I knew that wasn't so. The girls have a right to childhood long before having to check in with yet, another specialist.  

The initial blood work examined the possible causation of their symptoms.  Results came back normal with no specific reason as to why they both continued to have tummy issues.  In the meantime, physical symptoms were noticeable and from mid-summer through the procedure earlier this month, we were able to document exactly what was happening with stomach distress.  We were fortunate to take a few nice family vacations and each trip gave my husband and I, the bird's eye view,  into how meal time especially, affected the girls.  Nothing like being on the strip in Hollywood, CA and having to search out restrooms.  It was horrible.  

As this was unfolding, our youngest was not reacting well to the variety of medications that allergy had placed her on for solar urticaria.  I've shared before but both of our girls play competitive golf.  Our youngest began having trouble standing, starting having dizzy moments and felt faint during practice.  To make matters worse, the antihistamines allowed no respite from the hives.  Even with taking a multitude of medicine, she still had daily outbreaks with no relief.  

A good friend living with celiac reached out and shared her story, plus evidence that celiac often brings about skin conditions that may not be recognized as a celiac symptom, but when gluten is removed, clears up.  I explained that our daughter's blood work did not show any antibodies for celiac. However, we shared the thought with the GI doctor and she felt that based on their physical symptoms, we should go ahead and have the girls scoped. Unfortunately, we learned that blood work may be considered both positive and false positive as often, the results are innacurate.  I think of this as clear as mud science.  Our tools are still not perfected in much of medicine.  

The blessing of being busy as a family meant that we had little time to over think the procedure and so on the night before, it wasn't a big deal to either of the girls.  They both had to fast which can be dangerous to people living with T1D, but with our CGM present, we could see blood sugar trends.  I woke up several times during the night to check the CGM and by morning, felt that the girls were in a perfect range.  My husband, taking my relaxed cues, continued his routine to go to work.  Arriving at the hospital,  the girls and I quickly moved back to surgery, met with two separate anesthesiologists, our nurse staff, our gi specialist who was also the surgeon and before long, both girls were prepped and moved into two different OR.  It wasn't until an hour and half later that I was brought into recovery that I realized how foolish it had been not to bring my husband or another adult.  Suddenly, there were two patients in two recovery beds in my charge.  Our team thoughtfully placed their beds end to end and so for the next few hours, I walked back and forth from one daughter to the next. Side Note:  This might go down as one of my craziest parenting moments ever! Do not skimp on adult helpers! 

The GI specialist was able to immediately share her visual findings.  Both girls presented thankfully with no esophageal damage, but did have damage to the gastro lining of the stomach, flattening of the duodenum, along with bleeding, erosions and ulcers.  The tissue samples were sent to pathology and we were told it would be a quick turn-a-round for results.  Based on her findings, we prepared for a celiac diagnosis. 

However, the results came back in a much unexpected way.  Pathology found no Tcell damage, which was consistent with the lack of antibodies within their blood work.  As our GI doctor explained, that didn't mean that the biopsy was 'normal', it just meant that it was not celiac.  Clearly, the girls have damage as well as physical symptoms - yet, modern science hasn't found the pathway to understanding why that is.  Much like a dx of Type One Diabetes, we still do not have a direct causation to why the body has an auto-immune response.  This is again why it is so important to do pediatric and adult research.  We need more answers.

The diagnosis given to both girls is Non-Celiac Gluten Sensitivity (NCGS).  We met with a nutritionist over two days to discuss removing gluten for their diets and how to live safely from gluten exposure.  We learned that it is unclear as to why gluten causes gi issues in some people but that by removing it, their intestinal walls, stomach ulcers and even reflux will often clear completely up and go away.  They may even grow a bit more and see effects like healthier hair and nails.  Best of all, we may have a chance at seeing a marked improvement with our youngest daughter's urticaria.  One full week off gluten and off her five medications and she had less of an outbreak than she did with gluten.  She feels like this is progress. We are hoping for even better outcomes.  

This may be forever or it may be until new medical information comes along (c'mon research!).  We have agreed that the way we are most successful as a family is to ensure that we do everything together. 'One for all and all for one.' 

If you are dealing with any of these issues, please consult your doctor.  The best advice I can give is to surround yourself with a team of medical professionals that continue to help seek medical answers that work for you and your loved ones.  Everyone deserves to live a healthy life!