Same old same old. You guys are killing it - can I get you to coach other parents? I said…they’re welcome to come to our forums and we’ll give all the help they will ever need. (NOT) Shamlessly plugged our forums as always.
We did our first A1C test also since our last Endo appointment today. 5.7. She was proud of Liam and said he’s the best kid she treats. His control is on point…all the stuff I like to hear because it’s been tough getting where we are now and we’ve gotten really lucky that things have just worked for us…but it’s also just been a lot of self-educating and leaning on this community.
She does want him getting labs done because last time I refused…said, and I quote “he isn’t seeing anyone, for anything, at anytime…until he’s fully vaccinated.” She understood then…today she was very happy to hear he has had his 1st Pfizer vaccine shot and in about a month he will be fully protected from Covid and can do any labs she needs him to do…she threw the lab book at us.
It was a great visit (Zoom visit as they have been for going on 2 years now) and she, as always, just asked if we needed anything. I just responded “Yes, just making sure all his prescriptions are up to date would be awesome!”. That, combined with these labs is really all I need anyone for at this stage of our journey.
All in all, I’m very pleased with the visit and Liam was very talkative during this one also, which she enjoyed.
Our 90 day numbers are 89% in range, 10% high and 1% low/severe low.
It’s also great that she recognizes your success and is not trying to meddle with the program.
Do you know what labs she wants to do? I assume thyroid would be one of the tests. He’s probably too young for lipids to be a big concern yet, since his weight is fine. But they might want to do a baseline of it? Maybe vitamin D and iron. A metabolic panel maybe. Protein in the urine would be another good thing to do!
(The protein in the urine test done in the lab is easy. But the 24 hour take-home test is kinda lousy. Hey, that isn’t Country Time Lemonade in that container in the fridge!)
Would be helpful to discuss ahead of time. I don’t get bloodwork until I have had a chance to discuss all the tests with the doctor and we agree on what is needed.
Yes, all of that and celiac. We got tested once for celiac but she said she likes to get those every 6 months to a year. Since he’s not had labs ran for a long time and since those tests are (in my view) critical to analyzing all potential issues that are here now and that may be arising, I figure it’s worth it and I haven’t considered debating that topic. She’s a great Endo and I don’t see her running tests that are irrelivant or not needed. It’s another level of analysis that I’ve just not delved into myself…I’m trusting the Endo and staff to know what tests he needs but now that you’ve mentioned it…maybe it is something I should get educated about (so that Liam can get educated about them.)
It would be great if someone (:: coughs :: @Eric) would write a “For Dummies” thread on the different types of tests/labs Endos request to run, and your take on them…important or not? What they are ran for, etc., Just the simpleton (my) version that is a quick FAQ on tests/labs, what they test, how important they are, etc.,
For a kid, it’s fine because they only stick the needle once. So once it’s in there, they figure they should do all the tests each time. And losing an extra CC of blood isn’t a big deal.
But I like keeping my blood. It provides my muscles with helpful things, like oxygen and ATP. So I try to do some tests just every few years. I don’t mind the jabs, but I am stingy with my blood.
Congratulations on great numbers!! I know a lot of it is due to your diligence and self-education!!! Liam is doing great!!
I agree, that would be super helpful. My Endo does not do any blood tests. All tests have to be done elsewhere. She does not prescribe any specific tests (other than the usual A1c) so it is left up to me to ask for specific tests. I “usually” have an annual physical, which is really no more than a CBC, lipid, and basic HR, BP, urine tests. Not comprehensive at all. Last time I asked for addl tests to measure Vitamin D and magnesium since I was taking them as supplements. I also asked for sodium but they failed to test for it and I didn’t think it was worth having more blood drawn just for that test!
I’ve been tested for celiac once, many years ago but my Endo never mentions it should be repeated.
I didn’t know it until looking it up but from what I’m seeing from a few sources (one below), it is actually a test they recommend getting on a yearly basis.
I’m not sure if that’s referring to someone who has actually been diagnosed with Celiacs or not, though. Our Endo said it’s recommended, so we’re just going to do it…better safe than sorry in my view.
My endo has me tested for Celiac disease every year when I see him. Other than that all he runs is a CBC and A1C / meter check.
My other doctors check me every 2nd week for more exhaustive analysis, which should include electrolytes, creatinine (and computed GFR), albumin, etc to evaluate kidney disease.
Our pediatric endo orders annual testing for celiac and the other most common additonal autoimmune disease in type 1 patients, thyroid dysfunction. Also started doing my son’s lipids after a few years and basic kidney function type stuff.
The interesting part is that my son screened positive for celiac by blood markers shortly after diagnosis and has remained persistently positive but with absolutely no symptoms and no effect on growth pattern/nutrient absorption. The testing was followed up with an endoscopy that showed some borderline changes in his gut but 6 years later – still no symptoms. We researched and it turns out there is a pool of these kids with type 1 + screen detected celiac without symptoms. No one really knows what to do with them since usually celiac disease is diagnosed due to symptoms. Some small studies suggest restricting diet doesn’t seem to improve diabetes control. There has been a Canadian trial randomizing them to gluten free diet or not-- but no results yet that I know of. Since the diet is very restrictive and experts across two specialties at a large academic medical center told us there wasn’t clear evidence of benefit for him, we decided not to go gluten free until our son was older and could decide if he wanted to experiment with gluten free diet and observe any changes.
All that to say–the blood test makes sense to perhaps catch kids in the early stages of symptoms, but can also trigger a lot of follow up procedures and uncertainty if kids happen to fall into this unusual category. All screening has pros and cons.
Wow, you learn something new every day. I totally understand not wanting to go gluten free if there isn’t a need. It is so hard to accomplish, we have two close friends that are diagnosed celiac’s and the effort to stay safe is high. One is an adult and was diagnosed celiac in her 30’s, but the other was a child and it affected his growth pretty profoundly judging by the size mismatch between him and his brother. Glad it isn’t affecting your child’s growth.
