Tuesday, January 31, 2017

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.

It’s been a wild ride since Maggie’s diagnosis, just shy of two years ago. She has increased her insulin need from time to time, I say that because there are periods where her blood sugar just won’t stay up, her little pancreas is still fighting and still producing insulin. It’s a rare occasion to get a look into diabetes “BEFORE” the big killer of all beta cells.

Because Maggie was diagnosed through the Pathway to Prevention Study, she became eligible to participate in the LIFT study. (Long-Term Investigative Follow-up 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. But let’s talk about the second diagnosis in my family for a second and how we took the news.

I used to scroll through countless Facebook posts of online friends announcing they had another child diagnosed with Type 1 diabetes. I'd stop, read through their posts, offer well wishes, support, virtual hugs, prayers, anything I could. My heart broke in two for them, I imagined what they were going through having yet another child diagnosed. For that brief moment I couldn't even fathom having that bomb dropped on our family. Until it did.......

The reality of diabetes entering our lives again has hit! She was officially diagnosed on Wednesday, March 25th, 2015. Only 5 short years, 1 month and 2 days after her brother was diagnosed.

When Clifford was diagnosed I was currently carrying her and her twin sister, they were 8 months away from entering the world. She hasn't really known a life without 'Diabetes' so to say. It's always been there in the background. When she could talk, walk, understand the things around her it was there. Her brother always testing, always giving insulin, and always counting carbs.

Each taken at diagnosis in the same location

Her diagnosis story is one that I would take a million times over her brothers and so many others that I hear about. She wasn't unconscious like he was, she wasn't so sick she could barely move, and she wasn't on the verge of us losing her. Instead, she was smiles, giggles and laughs throughout the entire process. With our 'heads up' in February we were able to monitor her more closely than we would have prior to knowing. I mean, yes, because we already have a Type 1 in the house we knew the symptoms, and believe me when anyone started peeing or drinking more, I was on it. But this was more of a heads up than just knowing the symptoms. I knew it would happen, and I knew when to look for any unusual things in her.

On Monday, March 23, she woke up complaining that her stomach, and legs hurt so much so she asked me to carry her downstairs. She had some breakfast, peaches, but she continued to lay there for over an hour not moving, not wanting to play, nothing. So I thought to test her, just to see you know? She couldn't pee just yet so she said, so I tested her ketones with our blood ketone meter. Her blood sugar was pretty good for just having ate breakfast, 124, but that little sigh of relief soon changed when I saw the ketone meter, 3.0.  This is not when I got entirely worried, but I did start making calls, just to give a 'heads up' to others that we may be heading to the hospital.

After the calls were made, 10 minutes later I checked again she was complaining even more now. 130 (Great number), but ketones jumped to 3.5.  It was at this point when I got a call back from our TrialNet nurse, and the doctor had asked that I get a pee stick tested to see if she was spilling glucose in her urine. Finally, a short while later I was able to do this, she was in fact spilling 1/2 glucose and the ketones turned dark immediately.

We tested a short while again, after she ate an apple, as she was hungry. This time the meter read 216. Not something I'd typically like to see, but still I know not unusual, for someone pre 2-hour mark after eating. It wasn't until an hour later while waiting to hear from the doctors that I tested once more, our little table beside the couch was beginning to look like a crime scene from all the testing. This time her blood sugar was well over 300, 368 to be exact. I tested again for good measure just hoping, praying it was a fluke, that somehow, even though I cleaned her finger something was on it to mess up the number, but unfortunately it was 364. I spoke with the TrialNet once more, this time breaking down on the phone and apologizing for crying, but she directed us to take her into the ER.

By the time we were finally seen, her blood sugar had gone down to 178. Her cute little pancreas was still working! Thank god! Still I was hoping, praying that somehow I just messed up, that the meter was wrong, that she didn't have ketones that she didn't spill glucose. But we were admitted for 'monitoring' to watch her blood sugar overnight to see how it does. She spiked during the night over 200 to 211, without food, and her fasting number in the morning was 121, for 'technical' purposes, diabetes is considered a fasting of 126 or higher, but she already exhibited numbers over 200 which also meant 'diabetes'. She is in the honeymoon phase, we caught it super early, she still has functioning beta cells, god love them. So she is only on one injection a day of Lantus, the long acting insulin, to try to take some stress off of her pancreas and those beta cells, to get a little more life out of them, extend her honeymoon. We don't know when but eventually they too will die off, and she will be reliant solely on insulin, both long acting and short acting to survive. We are blessed for the 'warning' that it would hit, for the heads up. I tried so hard to soak in all the 'pre diabetes' moments of no testing, no bolusing, no shots, no concern with counting carbs, as short as it was, I enjoyed it all.

But now, we monitor and test with every meal, her once clear little fingers are now starting to fill up with small marks from frequent tests, her little legs dotted from her shots. While my mind has accepted her new normal, and while I know deep down this was truly a blessing to receive this warning, to catch it so early, my heart is having a hard time following suit. I never wanted diabetes to enter our lives, let alone the lives of two of my children.

She is so brave, and strong, and is taking it all like a champ. I've already heard the infamous, but at least she's so young she will never remember anything else. My heart will heal, it did with her brother, but the feeling is still all too raw. She's younger than he was by 2 years, she's the baby, and now the baby is being forced to grow up way too fast because of this disease.

It was truly a blessing to find out so soon, we can still enjoy some 'before' diabetes moments like the lack of multiple daily injections. For now, we will help her to understand the new normal, and take on the brunt of her care to ensure she stays as healthy as possible.

The statistics on Type 1 in siblings is this:

  • If one child in a family has type 1 diabetes, their siblings have about a 1 in 10 risk of developing it by the age of 50.
I knew these statistics shortly after Clifford was diagnosed 1 in 10, didn't seem that great then. We've talked about it in the past and we thought we may at some time have another child diagnosed with the disease, but still there was that 1 in 10 chance, right? 

I knew going forward with the TrialNet research meant that sometime in the near future I may receive word that one of my other children would be positive for the autoantibodies associated with Type 1. At the same time, I couldn't see risking the 'what if', they were already at a much higher chance of developing the disease. Why wouldn't I take advantage of this research offered to me? The chance to be given a 'warning' so to say of Type 1's attack. It was a difficult decision to make, but I'm very glad I made it, and would recommend it 10 times over to anyone who asks. I do not have to go on about the benefits that the 'warning' signal has offered our family with our 2nd diagnosis in our youngest (by 4 minutes her sister will tell you). What I can offer you is the point of view of having Type 1 diabetes from a 4-year-old. 

She's happy, healthy and isn't afraid of the future. She's unaware of what this disease is capable of, in time she will learn. Right now, in the present, she's happy about having diabetes because her diagnosis story has been much different than many others. Best decision I've ever made, aside from choosing this little girl's Daddy!

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, January 23, 2017

When a Decision Can Cost a Life

Diabetes is one disease that making the wrong decision could end up costing someone their life. Those with Type 1 diabetes rely on insulin to remain alive and healthy every single day. This insulin can be given through multiple daily injections or an insulin pump. All of which also require the proper supplies to administer. They require constant monitoring and checking of their blood sugar levels.

What happens when access to these supplies is denied? What happens when a decision by one party affects the lives of young children they don't even know?

Let's face it when access to these supplies are denied, this can be fatal!

Why am I writing about this? Because this is the very circumstances our family is facing. I haven't talked much about what is going on behind the scenes in the Montgomery household other than to close friends and family members, but when my children's lives are hanging in the balance, I will put all pride aside and ask for help.

In August of 2016, my husband, who is a corrections officer at a state prison was assaulted by an inmate. This resulted in a sprained finger and a TBI (Traumatic Brain Injury) which has required consistent medical attention by many, many doctors and specialists.

Because of this assault, he has been unable to work while he heals and recovers. Unfortunately, a decision was made to deny his claim for workmen's compensation. While the process of an appeal was occurring, my husband used his leave from work to cover the time he was off, so that he would still receive his income and of course be able to pay for our health insurance premium since it comes out of his employment.

Of course, it's now January, and we thought by this time he'd of had a decision in the matter of his workmen's compensation appeal and he would continue to be paid. HOWEVER, that is not the case, he ran out of leave, which means he is no longer receiving any pay.  This also means we are on the verge of very soon of losing our health insurance.

What does this mean for us? This means that access to the life-saving medical treatments and supplies for 2 of our children with Type 1 diabetes may be denied.

So where does this leave us? It leaves us without an income from my husband who is the main income earner in the household. It leaves us having to go through the process of applying for assistance for food and medical, which still has yet to be approved. It leaves us with the possibility of having NO coverage for life-saving medicine and treatments. It leaves us struggling to keep the electricity on, to keep our house warm, to keep a roof over our heads.

We're not new to struggle and we know that with this struggle we will overcome so many things. But when your children's life is in the balance, what is a mom to do?

I mentioned about needing help. I need help making my voice heard, I need help speaking for our family to let our representatives know what is happening and how the lives of children are at stake because of a 'decision' of one party to deny something that happened in their very institution by one of their inmates. My husband didn't ask to be assaulted, he went to work that morning hoping to have an uneventful workday and come home safe to his family. Instead, however, he had to endure an assault at the hands of a criminal, who already has hurt other officers before. Please see here: http://www.statecollege.com/news/local-news/inmate-sentenced-for-spitting-on-corrections-officer,1470601/ The August 10th incident is in reference to my husband.

That is where I need your help. I ask, beg, each and every one of you reading this to help  me by contacting my representatives. Make the voice of our family heard, shout it to the mountain tops and help me keep my children alive!
Maggie age 6

Clifford Age 13

Representative Glenn GT Thompson
3555 Benner Pike ,Suite 101 
Bellefonte, PA 16823
Phone 814-353-0215

Representative Bill Shuster
310 Penn St #200
Hollidaysburg, PA 16648

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. 

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.