These are my best practices for any newly diagnosed type 1 diabetic. I’m sure some or even many of my best practices could apply to type 2 diabetics, but you’ll have to make that determination. I’d love to see comments from other parents about their own best practices for what to do after learning your child has been diagnosed with type 1 diabetes.
I think my science background and tenacious personality made me a great dad for this assignment: What can I do to help my daughter and what are her best options to lead the most optimal t1d life?
#1. Find Your Doctor
Don’t settle for the first endocrinologist you meet.
Make sure you’re comfortable with your endocrinologist and if you’re not – move on and find another one. Based on our experience with the PA, I called Seattle Children’s the day after diagnosis and explained that I wanted our daughter to be seen by a medical doctor moving forward. I’m not biased against PAs or NPs – not at all. My decision was based upon her over-promising on the diagnosis which just seems like a novice error for someone with 15 years of diabetic care experience. I was also unimpressed with her approach to sharing the news.
She’s passionate about diabetes and her ‘bedside’ manner is great. She’s empathetic and caring, but I think she misses on providing parents with all of the resources they should have after learning of their child’s diabetes diagnosis. I don’t think she provided much and my wife and I were leading the charge only based on what we could find via Google and Reddit threads. That’s pretty lame to me.
Don’t worry about being perceived as rude. It’s your child’s health and life we’re talking about. I think I may be received as being rude at Seattle Children’s but that’s because I come from industry and my wants and asks are persistent and I don’t think clinicians and their teammates are accustomed to that type of pushback. I don’t care. I’m not yelling or cursing, but I’m sure as hell professionally persistent and that makes some in the clinical environment uncomfortable. Well – too bad; get used to it because I ain’t going away. I suggest you lead with this mentality.
Priority number one: get the doctor that fits you and your child – don’t accept mediocrity.
#2. Measure Mental Health
This is so important.
Consider your child’s mental well-being after diagnosis. The night of my daughter’s diagnosis, my wife immediately agreed we needed to find a psychologist for her. Of course, we’d prefer that she share any feelings/emotions regarding living with t1d, but we’d be naive to believe that would always be true.
This is probably my strongest recommendation and I think the age of diagnosis is irrelevant to the point.
#3. Find Clinical Trials
Clinical trials and the risk/reward analysis.
Identify if there are any possible clinical trials for which your child is a fit. Our daughter was diagnosed early in the process. The beta cells in her pancreas were continuing to produce some insulin. In that regard, she was the ideal candidate for many clinical trials. Unfortunately, many of the t1d clinical trials are looking for patients who have a functioning pancreas. It’s because many of the clinical trials, at least at this moment, surround immunosuppressants or immunomodulators. They are effective at slowing down the body’s attack on the pancreas. The results, thus far are promising, some are delaying the need for insulin by as much as 3 or 5 years.
There’s a tremendous amount of data that highlights the significance of maintaining functioning beta cells for as long as possible. Every parent and their child needs to fully understand the implications of participating in a clinical trial. It’s not a fit for every parent and child. However, I would strongly suggest – at this early stage of the diagnosis – that you don’t know what you don’t know. It’s best to learn as much as you can and if you’re at least considered for a clinical trial you’re allowed to speak with the scientists and clinicians running the trial. These are real experts in diabetes and they’re on the front lines of the emerging science. To capture their full attention, even if for an hour, can provide you with so much information that you’re very unlikely to ever receive from your endocrinologist.
The frustrating part for us was while our daughter was known to have t1d based on the four antibodies for which she tested positive she did not meet the actual diagnostic criteria for type 1 diabetes. We had identified some clinical trials for which we had wanted to join. We were shocked to learn from those running those clinical trials that our daughter didn’t meet the diagnostic criteria for type 1 diabetes, which is here:
FPG = Fasting plasma glucose
OGTT = Oral glucose tolerance test
|FPG ≥126 mg/dL (7.0 mmol/L). Fasting is defined as no caloric intake for at least 8 h.*|
|2-h PG ≥200 mg/dL (11.1 mmol/L) during OGTT. The test should be performed as described by WHO, using a glucose load containing the equivalent of 75 g anhydrous glucose dissolved in water.*|
|A1C ≥6.5% (48 mmol/mol). The test should be performed in a laboratory using a method that is NGSP certified and standardized to the DCCT assay.*|
|A random plasma glucose ≥200 mg/dL (11.1 mmol/L) in a patient with classic symptoms of hyperglycemia or hyperglycemic crisis.|
This is why so many clinical trials around t1d go unfilled. For many of these clinical trials, they’re looking for patients with a pancreas that is still functioning but also meets the above diagnostic criteria for diabetes. I mean think about that: most people meeting any of the above criteria would most likely have a pancreas that ceased working.
The clinicians running these clinical trials were also interested in having our daughter participate. We knew that our daughter wasn’t going to meet the diagnostic criteria via her A1c because she was still producing insulin and she wasn’t even showing any diabetic signs or symptoms. Her most recent A1c didn’t even meet the criteria for pre-diabetes. However, since our daughter began wearing her continuous glucose monitor (CGM), Dexcom brand, we were hyper-focused on monitoring her blood sugar. I’m sure this is true for most parents when their child first begins wearing their own CGM.
We noticed an interesting trend in our daughter’s blood sugar levels. If she ate pizza, her blood glucose would go beyond 300. It’s funny now to think of this ah-ha moment because as most of you are already aware – her reaction to pizza wasn’t unique to her. We planned to have our endocrinologist order an OGTT for Raegan so we could meet the diagnostic criteria. I’m surprised they hadn’t done this already and maybe they didn’t because they knew she was t1d anyways – from her antibody test results. Either way, she ordered the OGTT for the following week, and let me tell you – the story of her OGTT was one for the books and you can read more about that here.
We didn’t move forward with the clinical trials because of – Covid. Our daughter ended up meeting the diagnostic criteria because of that OGTT, which you should read about. The issue was – us. Raegan, my wife, and I weighed the clinical trial as a risk/reward ratio. The trial was phase II and the drug was already approved for arthritis and had been around for a while. These clinical trials were around safety and use for t1d. Anyways, the issue was the chemistry of the drug. It was an immunomodulator and thus it would lower Rae’s immune system. Covid was still relatively new and there weren’t any vaccines at this stage. The risk of lowering her immune system to gain a few years of extra pancreas life wasn’t great enough to outweigh the risk of her getting Covid with a weakened immune system.
There were other interesting clinical trials we considered: both were around probiotics, which again – allowed us an opportunity to speak with leading experts on diabetes and get their insight into probiotics and the potential impact the gut biome may have on diabetes.
Here are some great resources for you to begin your clinical trial search:
#4. Use Social Media – Trust Me
There’s some good advice on social media.
Here’s a moment where social media can be valuable. There are many good follows to be found on Twitter and yes – Facebook is outdated – but it continues to be a good source for Facebook groups. You can find some good local and national ones there. Here are some good subreddits to follow:
I’d also suggest identifying local groups as meetups can be a valuable resource for your child after diagnosis. Meeting others with similar shared experiences can be tremendously valuable to your child – and you. There are some websites you should also consider favoriting:
#5. Have a Plan
Do you know how to make insulin from a pig?
I recognize this can seem a little ‘nuts’ or even extreme, but I’m a firm believer that prior planning prevents poor performance (my Army background). Anyways, start thinking about building out your ‘apocalypse’ insulin supply. I use apocalypse to represent any moment in time when it may become difficult to source insulin. There are many diabetics and many need insulin. If there is a disruption in the availability, you can bet there’ll be a run on insulin.
Whatever we have left remaining, regardless of the amount, in insulin pens, cartridges, or vials gets stored in a separate bin in our garage refrigerator. I’d recommend getting 90-day supplies of your child’s insulin. Of course, I recognize not everyone has the same insurance, but get it in volume if possible.
Please remember, I’m a chemical/biomedical engineer, but I even downloaded the original patent for producing insulin. Hey, if the times ever demanded it – we’d all do whatever we needed to ensure our loved one had access to insulin.
It’s pretty interesting and very infuriating to know that the Canadian who held the patent on insulin sold it to Eli Lilly for $1 because he thought everyone should have access to insulin. Insulin prices are immorally too high and I of course have thoughts on that as well.