Friday, August 19, 2016

Early Detection of Type 1 Diabetes

That title may SHOCK some of you. You may be unfamiliar that Type 1 has the potential to be detected early. But we've experienced how remarkable the early detection of Type 1 diabetes can be. In fact, if you are reading this, chances are you have a family member who is touched with Type 1. For siblings, parents, and other family members with Type 1, you may be eligible for TrialNet Pathway to Prevention. This program/ study has meant the world to our family.

Maggie was originally involved starting at the age of 1 in the Pathway to Prevention Study. When she was 4 years old she tested positive for 5 out of 5 autoantibodies that are commonly seen in those that develop Type 1. Now this didn't mean she would 100% develop it, it meant she was at a much greater risk.

After this news, she then was given the OGTT (Oral Glucose Tolerance Test) to see how her body (pancreas) was working currently. Her tests results were abnormal at the time. Shortly after she was diagnosed.

But if you've been following my blog you are familiar with her diagnosis story over her brothers. The difference was a child in DKA unresponsive, to a child, full of smiles, giggles and aware of what was going on.

To this day, 6 days shy of 17 months after her diagnosis, she is still only on 1/2 a unit of Lantus each day, that's it! Let me repeat that, there are absolutely NO MDIs (multiple daily injections) 17 months after diagnosis. How amazing is that!! Because Maggie was diagnosed through the Pathway to Prevention Study, she became eligible to participate in the LIFT study. (Long-Term Investigative Followup in TrialNet Study) LIFT helps to monitor Maggie's disease progression, insulin requirements, long-term effects, etc.

It's interesting to see how Type 1 develops, having never had any experience with it before Clifford's diagnosis. I never got the chance to mourn the loss of his pancreas slowly and become accustomed to the new life, instead, I was thrown into it. This time, even though we're more experienced we're getting an inside look at the disease progression. At this point, typically, Maggie may not have been technically diagnosed seeing her insulin need is so low. But this means we are able to take stress off of her pancreas NOW and extend the life of it. To me, I find it absolutely amazing.

If you've been on the fence about whether or not to participate, I encourage you to read Maggie's diagnosis story and even scan through her brothers. You will definitely see how beneficial this program has been and how it's changed Maggie's life for the better!

For more information and to find your Local TrialNet location. Please see their website here.

Monday, August 8, 2016

Back to School with Diabetes

It's almost that time of year again. The kiddos are getting ready to head back to school and start a new year. It's always a busy time with two kids Type 1 diabetes. There are supplies to be gathered, bags to be put together, documents to be prepared and meetings to schedule.

With so much on your plate as a parent of a child(ren) with Type 1 you may be overwhelmed with where to start. But I want to let you know you are not alone. In fact, the website I'm working for has put together a great article on everything you need to know to get ready for school this year.

If you are newly diagnosed this is a great starting point. Please check it out here at The Diabetes Council and let me know what you think. If we forgot anything, let me know.

Tuesday, July 19, 2016

CDE Interview with Janet Howard-Ducsay

I'm very much enjoying my new position with The Diabetes Council. In case you haven't had the chance to check it out, I recommend you take a look over there. It's a new site, and we're getting more information up frequently, but there is still a TON of great stuff.

I conducted my 2nd CDE interview recently with Janet Howard- Ducsay from Redlands Community Hospital. The CDE's I've known since my kids have been diagnosed have always been hard-working and patient dedicated. You can tell that each and every CDE I talk to always wants the best for their patients, and it shows here with Janice. Take a look over our interview and share with friends and family that may be interested in a Diabetes perspective from a CDE's point of view.

Growing Up with Diabetes

What's the saying they always say, "Kids grow up so fast"? Boy, is that true, but you know what? Kids with Diabetes grow up even faster! Like light speed faster. I mean it was only yesterday that my little girl was learning to walk and talk. After her diabetes diagnosis, she was ready to take on the world, always wanting to learn more, do more and manage more. And here's the kicker, she's only 5 years old.

So as I'm working earlier today, Hayleigh was helping me get lunch ready. I hear a clicking sound and look over and what do I see?

I ask "What are you doing Mags?" and she responds nonchalantly with, "Oh, nothing, just testing myself for lunch".... 

Wait a second, when did I blink and this tiny little lady become independent and wanting to test herself, at 5! 

SO yes folks, kids with Diabetes do grow up even faster! We joked last week when she asked about testing herself and she asked when her brother first tested himself, well, I told her "He was 7"... She grinned and was like "Okay then".... I guess this is what set this in motion, it's always a competition, however, little did she know he didn't get diagnosed until he was 6, so she had him beat there by 2 years, but that's something' we'll keep as our little secret, since she thinks she's winning.

Monday, July 18, 2016

New Position- CDE Interviews

Well, it's been a little while since I last posted, almost a year in fact. It's been a busy year for sure. I've recently accepted a new position that I'm loving. I'm in charge of reaching out and getting in touch with CDE's (Certified Diabetes Educators) across the country and asking them about their roles in the lives of those with Diabetes (All types). 

My first interview is up! I had the pleasure of talking with Janice Baker, B.Sc., M.B.A, R.D., CDE, CNSC, of Arch Health Partnersin California. Janice is a really sweet lady dedicated to making the lives of those living with Diabetes much more manageable and fulfilling. Take a read through our interview and share with your friends and family. If anyone is in the area where Janice and her partners work, I'd recommend checking them out. 

Tuesday, August 18, 2015

CWD: Friends for Life, an amazing experience!

Did you ever go somewhere and just feel like you instantly belonged? That's the feeling you get when you are at Friends for Life! It's been well over a month since we've been there, but we're ready to go back. From the moment I arrived, I saw pumps, those testing their blood sugar, and I got that feeling of 'normal'. It was an amazing moment to take in to be around those that just get it.
My feeling of belonging

Where else could you go and have an Olympic Athlete read a story to your kids. Yes, you did hear me right, an OLYMPIC ATHLETE. Not only is Kris Freeman an Olympic hero, he is Clifford's hero and Clifford had the opportunity to meet his hero in person. He was amazing and kind, and even let Clifford try on his Olympic jacket!

Clifford and his T1 hero Kris Freeman

Everyone was excited about being there, just not the T1 kiddos.
Anna Showing off her FFL Name tag

Mickey Pancakes for Breakfast!

 Maggie made her debut at FFL as a screenwriter and director when she produced her own movie about what it's like to have Type 1 diabetes! She was beyond proud of her accomplishment and her certificate! During this showing, we had the pleasure of meeting Kevin Covais, from Disney's Good Luck Charlie. The kids adored him and were in awe that he was there in person, as they've watched him so many times on tv.
The kiddos and Kevin Covais

Clifford also got the opportunity to meet with Tom Karyla, who has been a huge help throughout our lives with diabetes.
Clifford and Tom!

Speaking of heroes, Annie fell in Love with Lenny the Lion who Clifford received when he started pumping in 2012 with Medtronic. At FFL She got to meet Lenny in person, and was beyond thrilled.

I could go on and on about the amazing time we had but I will show you in pictures to end this blog post. This doesn't even begin to touch on the amazing opportunity and knowledge we learned and took with us from FFL. That is another post for another time. We had our minds blown and enjoyed every minute of it. I'm a bit sad to see that we did not get a picture of Clifford and Richard Vaughn, who he was ecstatic to meet. Clifford attended Richard's talk with us and was so happy to see he had the same exact pump as him, color and all. There's always next year!
The kiddos at the TrialNet / Celiac Screenings

All the stars together

Picking up a few of the kids from their sessions

Watching Clifford get his picture drawn

Clifford and himself :)

Hayleigh and Ethan and one of their 'teachers'

Maggie and her new friend with Diabetes


All the youngest FFL'ers

Checking out the quilt for life

 Checking out the quilt for life
Young FFL'ers

Picking up our 'tweens' from their dance

Rocking out at their tween dance

Everyone together

The whole family in a line

Downtown for a snack

Wednesday, July 15, 2015

The Frustration of Getting Diabetes Supplies

You need to test your blood sugar daily, up to 15 times a day with Type 1 diabetes. In order to do this you need to have the test strips, and lancets to do so right? Unfortunately, for many with diabetes of all types it isn't as easy as it sounds. Instead, you spend over a month back and forth between a mail order diabetes supply company, and your insurance. I've battled before to get the supplies my son needed, but this time it was for my 4-year-old daughter, newly diagnosed in March. And this time it wasn't the insurance who was causing the holdup, instead is was the mail order company, who was not doing their job properly. I'd advise you if you are looking for a new D supplier, or are looking to sign up with one for the first time to stay away from EdgePark Medical.

For over a month I have talked to numerous representatives, many of who were quite rude with me and refused to listen to what I was saying. To say their customer service is horrible is an understatement. Our insurance said, they will cover 100% under the DME coverage for whatever her doctor prescribed. So I double checked with EdgePark, her doctor prescribed 27 boxes of (50 strips) and 14 boxes of (100) lancets for a 3-month period. Should be a piece of cake to get these sent right? WRONG!

Instead, they try to bill me for almost $800 for her first order, and insist that they can only send 6 boxes of strips (300 strips), and 3 boxes of lancets (300 lancets) for a 3 month period. That doesn't add up if you do the math at 15x testing a day right? After over a month and a half, our insurance calls and let's them know they are to submit documentation (prescription) with the claim when they put it through, otherwise without documentation from the doctor she is to test this many times a day,  guess what, it's going to get denied, which is what they did time after time after time, for over 1 month. No matter how much I told them they need to talk to the insurance, they stated no they didn't, in fact, they only needed to submit the claim and can't help if it's denied. But apparently, from the beginning if they were doing their job correctly, it would have gone through. No matter how much I told them that my 4-year-old was running dangerously low on her supplies, they could care less.

When I expressed to them I would have NO WAY of testing her blood sugar soon when we run out, short of pricking her finger and tasting her blood to see if it's sweet, they could care less. In my experience when it comes to EdgePark Medical Supplies, patient, and customer care is not of their upmost priority. Instead, they argue with the patient, or caregiver, insist they are doing everything they can to get their supplies to them when they are not, and get downright rude.

So now, I have a choice to make, to stick with a company that has treated us horribly, and lacked empathy to understand our situation, and the competence to realize it has been their fault all along. If they would have listened to me initially and contacted our insurance, this would have been fixed, well before she was dangerously low. Or I can change and go with one of the other 4 our insurance has suggested. The question is, what is EdgePark going to do to rectify the situation. Not once throughout the entire process have I heard an apology of any sorts, only from our insurance, who was not at fault. I guess for the brief time being, while I look around at the others, the ball is in EdgePark's court.