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.