We are getting close to the yearly physicals around here and I know I need to update the kids’ pediatrician. Does anyone have any experience to share? I am recently diagnosed with LADA (January 23). I’m wondering if/how to ask about screening for antibodies and what to tell my boys so they can ask the right questions at their appointments. I barely feel knowledgeable enough to ask questions on my own behalf at this point lol.
Thanks for any guidance you have to share!
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You can get your kids screened for free through trial net. I believe you do a finger stick and send it out in the mail through a kit they send you. You can also sign up any of your siblings under45?(don’t quote me on that).
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Thank you! This is so helpful. I signed up this morning for my youngest son and will pass along the info to the older ones.
I picked this up from my endo’s office a couple of days ago:
The QR code seems to be broken but its https://Type1Tested.com
It’s the autoimmune test, but that’s hard to find; much better marketing to scare people. It’s Sanofi:
Provention Bio is the registered trademark of Provention Bio, a Sanofi Company. The Provention Bio logo, Type 1 Tested, and the Type 1 Tested logo are the trademarks of Provention Bio, a Sanofi Company. Third party marks ® and ™ are the property of their respective owners.
It seems to me that the autoimmune test is the right test for children of people with the autoimmune disorder. You could pull your own test results off the lab web site and give it to your kids so that they can give it to the doc, but likely as not they won’t see a real doc so the person will just throw it away. “Family history of diabetes” is likely to be the only question on the form and that doesn’t mean anything (T1 or T2?)
There’s a lot of other advice people can give here; things like GLP-1 agonists which may be effective with LADA because of the residual insulin production.
It’s preventative so US insurance should cover it and, given that Sanofi are pushing it, I assume they have got it accepted as such. Read the web site; it’s marketing but it isn’t 100% bad. This is a more useful page than the home pages:
Note that it includes “TrialNet” but gives two other approaches. I would expect that since you are LADA an endocrinologist would almost certainly sign off on tests for offspring.
Also make sure you have your own antibody test in your records; if you don’t you may have problems when you hit Medicare because LADA is typically slow onset. LADA is often misdiagnosed (and, indeed, treated) as T2 but the antibody test is a slam dunk refutation of a T2 diagnosis even though you might still have residual insulin production in a few years time.
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Thank you! I will definitely follow up with the doctor - all my kids see the same one and he is in the same practice as my GP so I feel fairly confident we can get some antibody testing, I did enroll the youngest in TrialNet too. I am passing this along to my brother and his wife so they can decide about their kids. Everyone in my immediate family should be aware.
This is really hard for me on an emotional level. It’s one thing to develop a chronic illness myself but then to realize that all my sons, niece and nephews are at a higher risk makes me feel genuinely sick.
I think I might need some therapy - is that a thing for newly diagnosed people? I thought if I could just make it to my summer vacation, I’d be able to catch my breath a bit and settle in but I am still swirling and stressed beyond belief.
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Hope this helps…
I have 7 siblings, I was dx T1 in 1965. Only T1D in my family.
I have 20+ cousins. No other Type 1s. No nieces or nephews with Type 1.
Yes, T1 can run in families, but not always.
There are several type 2s, including my Mom, now 92 years old.
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I can’t recommend this enough. About 4 months post-diagnosis I got a therapist who specializes in helping people manage chronic illnesses and also has T1D herself. It’s been very useful in managing the churn of difficult feelings surrounding the constant management this condition takes.
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This is our situation as well. Lots of T2s, but we aren’t aware of another T1D in our families, ever, on either side of our family.
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You can also be a completely isolated case. It’s that way in my extended family, nobody else, just me.
If you want the help, then it’s a really good idea. And the ADA Standards of Care 2023 does recommend it; see standards S.38–S.41. See p.85 of the pdf dated 12/6/22. I got it from the blue link in the left column of
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Kind of but the risk increase for children with a T1D mother (that’s a mother who was T1D when the children were born) is about 7.5x using the NIH figures and you weren’t a T1D when your children were born:
1 in 300 children and adolescents develop type 1 diabetes by age 20 years , but 1 in 40 offspring of mothers with type 1 diabetes and 1 in 15 offspring of fathers with type 1 diabetes develop type 1 diabetes.
Extracted (by google in this case) from https://www.niddk.nih.gov/-/media/Files/Strategic-Plans/Diabetes-in-America-3rd-Edition/DIA_Ch11.pdf
So the Sanofi advertising blurb was based on the assumption that you are male 
I’m firmly of the opinion that the high incidence of T1D justifies regular preventative, or rather detectative, tests for everyone. In the case of PWD with children or, indeed, other family members, it seems that it’s possible to get the tests now. Eventually it will be routine for everyone who wants it.
Also one other thing; this is statistical. It applies to all our family members, parents, grandparents, siblings, cousins.
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Another article you may find helpful.
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Thank you for the reality check. It’s so hard to keep this in perspective. And it’s not my fault that I developed diabetes.
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Thank you! Yes, I will look into it. Did you use a specific resource to find such a therapist with those qualifications?
To MM2, jbowler, and bkh - Thank you for the resources! I read a lot about diabetes - there’s so much for me to learn. I really depend on resources referred by other PWDs.
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One other factor in my case is that as infant, my mother had breast infections and switched me to evaporated milk (1959). After my dx at age 5, she read that this may have led to my T1D. But there is no proof, and it just made her feel bad. Different sources give various data on this. But todays infant formulas are available, and not linked to higher risk of T1D.
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My therapist was recommended to me by someone who works at my endo’s office. Yours may also have someone in their referral files. If not, you can try searching here for therapists who focus on managing stress from chronic illness:
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Thank you! I’ll start with the endo’s office. They have offered referrals to other practitioners like a nutritionist and diabetic nurse educator, so maybe they have a therapist too.
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@MM2 - That would make me feel bad too! As a parent, I am so vulnerable to feeling guilty/responsible for things related to my kids. I think that’s part of what’s happening with me right now in fact…