Hi everyone, new here. My name is Anita and my husband Aaron is a type 1. He recently became concerned that our oldest son Avery, who is 11, has been exhibiting symptoms of diabetes so he would periodically test him in a similar manner to how he tests, in the morning and before/after meals. We got some erratic results, a fasting 116 one day, a fasting 25 another, normal range 110-115 before meals but 160-180 after, but it wasn’t consistent because he would have days of completely normal readings. Then last weekend at baseball camp he suddenly went very pale, shaky and said he felt like he was going to throw up and pass out. I gave him a snack and some Gatorade but did not have access to our meter until we got home 2 hours later and his bg was 77. I mentioned what was happening at my 1 year olds dr appointment and they immediately jumped in to action. They tested his bg and did a urine dip. His bg was 148 (fasting) and he was positive for glucose in the urine, the pediatrician said it was enough to say he had been in the 200-250 range within the last 3 hours. So she gave us a lab script and said go get them done by the end of the week (it was a Tuesday). Well 90 minutes later she personally called me back and said she was discussing Avery’s situation with the heads of the practice and they thought it necessary to move forward more quickly and scheduled him an appointment with a Pediatric endocrinologist for 9 the next morning and labs at the hospital at 7 am. Went the next day, did the labs and saw the endo. He came in and was a little annoyed we were there because his fasting bg was 116 and his A1C was 5.4 so he said he was fine. When we explained the rest he reluctantly ordered a glucose tolerance test, a GAD65 and a c-peptide test. We’re still waiting for those to be scheduled but we’re told it probably won’t be until the end of the he month. The endo said it could be really early onset or he’s just going through puberty. Does anyone have any insight or similar stories? If a similar story, what was the outcome? Are we overreacting? Oh I should add my husband “found” (he’s not a very good diabetic lol) his ketone test strips this morning and out of curiosity tested Avery and it was positive for trace amounts. Anyway, that’s our story, thanks in advance for your help!
As for the ketones, in and of themselves they most likely don’t signify much. Everyone produces ketones at one time or another; they’re the normal result of burning fat. And you did say they were only trace amounts.
However . . . I’ve never heard of puberty all by itself causing readings in the 200s and sugar in the urine, but I’m not a doctor so I can only offer a personal lay opinion. That said, with the data you quote, I would not tolerate the lack of concern your endo seems to be exhibiting.
Thanks for the reply… it’s interesting puberty can mimic onset of type 1.
As far as not tolerating… I debated getting a second opinion. I have a friend who’s 12 year old is type 1 and loves their endo with Nemours. The endo we went to literally said “why are you here, what’s the big emergency?” That kind of rubbed me the wrong way and also laid doubt in my mind, made me think that we are overreacting to all this. With his results, are we needlessly worrying him and ourselves? I know his blood work was normal, a tad on the high side maybe but normal nontheless so I am just not sure what to think.
You are not overreacting. The endo seems to be underreacting.
A child can get diagnosed with diabetes with blood sugars over 180, according to my daughter’s endocrinologist.
Given the numbers you’ve been seeing, I’d say more follow up is definitely needed. highs and lows can be typical of early diabetes when the pancreas works in fits and starts.
I recommend looking into the facebook group typeonegrit (lots of parents and kids with type 1, adults too). Also bernstein, utube, parents, children type 1 - Search Videos
It does seem a mixed picture but the tests should eliminate any ambiguity. I would continue to test fasting and post-prandial BGs and keep a record so you have something to show at the next appointment. If he is in the early stages his condition could change. DKA takes some time to develop, but keep an eye on him. Sounds like you’re pretty up on the signs, but given that you’re not going to see test results for a while, make sure. Vomiting and heavy panting breath with that ketone smell are emergency signals. If that happens you don’t wait for his appointment, you go straight to the ER.
There is absolutely nothing wrong with seeing a different Pediatric Endocrinologist.
IMHO there is no reason the lab work is not drawn the same day (or tomorrow depending on time of day) and sent to be analyzed.
For my child, I would demand (yes - I DO tell the doctor what tests to run - I don’t really care if they get offended):
CBC w/ diff
CMP (fasting)
ZnT8
GAD-65
IA-2
IAA
C-Peptide
Perhaps the Doc might have some additional suggestions, but for my child - this would be the starting point and the minimum and the blood draw would happen no later than tomorrow.
Personally I am not a big fan of A1C used as a diagnostic tool for [Type 1] diabetes. It is that word “average” that I don’t care for in this regard.
Just so. If someone is whipsawing back and forth between oh, say, 45 and 190, the average could look perfectly good while concealing the fact that there was real trouble brewing.
David and Tim… that is kinda our thought process.
Before his endo appointment they did 6 labs. Don’t remember all of them but I know cbc and A1C were there. The endo didn’t tell us any of the results at first, just that they “looked good so no cause for concern”. My husband had to ask twice before he told us what the A1C and fasting bg were.
I don’t know all the tests being ordered for the next go round aside from the 3 I listed above because that’s what he told us. He said the tests had to be done at the hospitals pediatric outpatient center and they had to get preapproval from our insurance first. They outpatient center told me when they got the lab orders they would call me to schedule the appointment. I was thinking of calling the endo tomorrow to see if there’s been any progress. You’d think, given how unpredictable diabetes can be, that they would rush the tests just a little so if he does get the diagnosis we can start helping him.
Just out of curiosity has anyone heard of or encountered a case like ours? If so did they end up with the diagnosis? I am trying to prepare Avery just in case and hold out hope but my husband believes 100% he will be diagnosed… I hate the black cloud of uncertainty looming over us.
CBC and CMP really not related to diabetes other than the Glucose component if the CMP is fasting. But those are just basic tests that can help to rule out a whole host of items and assist with a diagnosis or in the rare cases show something that was not even being considered. Not any of the “diabetes” tests.
Can you find out the other tests that were performed?
Most insurance companies would allow blood work to be done at national or independent lab centers (ie - Quest Diagnostics, LabCorp, etc…) and would actually PREFER that over hospital testing. Nothing to do with accuracy - all lab centers should be FDA approved and accurate (although lab results from one lab may not exactly translate to lab results from another lab so the “reference” range used should always be the one the lab provides). To the point, the issue is cost. Hospital lab testing is STAT because they often need that but means more expensive. Most national labs do overnight testing for MOST of their tests. (Some tests can not be overnight for one reason or another).
Don’t worry about “preparing” Avery. No benefit. I would suggest if you and your husband have differing opinions on this that you keep Avery completely out of it. Parenting advice. Feel free to ignore. lol Everybody parents differently.
We don’t really have differing opinions, I am just trying to be optimistic and he doesn’t really have any doubts.
As for the lab stuff, I asked the endo if it could be done at a lab because we have a quest 5 minutes from our house and the hospital is 45 minutes away and he talked to me like I was dumb and said because he was ordering specialized, more in depth tests they had to be done at the hospital, and that’s all he would say. I had a copy of the lab orders from the pediatrician but the testing center took it and I hadn’t made myself a copy but I will try to find out.
Today Avery is fine, a little thirsty, trace ketones but a fasting bg of 101 at wake up and 93 after lunch. Trying to do periodic testing for a log book just in case we need one and for our own benefit just in case, but doesn’t seem to be a need, at least today. Other days are different.
I just looked up Avery’s information through his patient portal, the labs they ran aren’t there but the actual results from his urine dip are…
Can anyone help me understand this? Is it good, bad, in between…
First, I don’t see any antibody tests in there, unless I’m not looking in the right place.
Second, and nothing to do with diabetes per se, if my doc stonewalled me the way yours is doing, I would be in his face like an angry tiger protecting its cubs. And unless I saw an immediate (read: instant) willingness to communicate, he/she would be my ex-doctor.
I would have bitten that Doc’s head right off. Any Doc that comes between my child and their health is gonna get it. Their response was totally BULL****. It would be an understatement to say that Quest Diagnostics is capable of performing many tests. It is unfathomable why the Doc would falsely claim that Quest Diagnostics can not perform these test.
So the lab results which you were provided with should have come with a reference range specific to that lab. It would be irresponsible to tell you what those results mean without seeing what THAT lab shows as the reference.
As to the additional tests, the only one I see that looks relevant is the C-Peptide however (again) if it were MY child, I would demand the range of relevant antibody tests ALSO be performed as:
ZnT8
GAD-65
IA-2
IAA
And YES - I would find Quest Diagnostics PERFECTLY acceptable. Not to mention which, Quest ALWAYS reports the reference range results and highlights any test results which fall outside their reference range. When going to Quest if you ask for a “COPY TO” they provide a form, enter YOUR home address and a copy of the tests will be mailed to your home AS WELL as a copy to the doctor. Your copy may be intentionally delayed a couple days to let the Doc see it first although that could be dependant on local State laws.
As mentioned, I am not a fan of A1C for diagnosis of Type 1 Diabetes. Lipid Panel - great. Possibly not relevant but hey - good information. TSH - great. Possibly not relevant but hey - good information. And the CBC and CMP - sort of looked like those were already ran? Nothing wrong with repeating the tests - great information but not entirely relevant unless the first tests showed a problem in which case the Doc IF THEY WERE DOING THEIR JOB would have already communicated with you.
However it might be good to stay focused on a diagnosis (or ruling out such) of diabetes as this appears to be your area of concern.
I can understand a doc running a whole battery of tests not necessarily targeted at the specific area of concern; often that happens with the malpractice insurance premiums in mind. (I said “understand”, not “approve” or “agree with”.) What I can’t understand is FAILING to run the tests appropriate FOR the specific area of concern.
This doc really does not sound like a keeper. You’re not getting what you need. Not yet, anyway.
The labs I showed are what has already been done, they were taken on 6-14, I do not have the results of those except for what I’ve been told which is his A1C was 5.4 and fasting glucose was 116 and that everything else “looked fine”. The dr did order additional tests, one is a glucose tolerance test and the other is the GAD65, apart from those 2 I am not sure what else has been ordered. My.husband seems to think we are getting the reactions we are because they’re hesitant to diagnose anyone, especially a child, who doesn’t present with the classic symptoms, i.e.: high A1C, bg 200+ and ketone positive. I plan on calling our pediatrician in the morning because they received copies of the lab results to see what they say and I have already wanted to go to Nemours for a second opinion but my husband wants to stay with this guy for now since he’s already ordered more labs and because “another endo is just going to look at the same labs already done and come to the same conclusion.” I don’t necessarily agree with that as different Dr’s have different view points and approaches, even given the same information. IF our son does get the diagnosis we have already agreed we will find another endo but for now I feel stuck. I feel like we’re in this huge grey area where he may be so early no one will do anything. I will also be calling the endo tomorrow for an update on the lab orders, find out which tests were actually ordered and press for the earliest appointment possible.
At this point I feel helpless because I am trying but feel like I am hitting walls.
Oh, any take on the results of his urine dip?
Without reference range - it needs to be discussed with a doctor.
If your (non-Endo) Pediatrician is more cooperative, there is absolutely no reason under the sun that your Ped can not write an order for the relevant tests which you could then take to Quest Diagnostics.
The GAD65 is good but the issue is that all Type 1 diagnosis do not present with the same “abnormal” antibody tests. Some might be positive and some negative - it is not necessarily a black and white thing. It certainly is possible the GAD65 could come back negative but some of the other antibody tests might be positive. There is a reason these tests are there - they should all be run and the results of all of them looked at together.
Thanks, like I said, I am calling in the morning although given our luck I am not optimistic they will say anything since they’ve already sent us to an endo but it can’t hurt to try, especially to get the lab results and have them explained to us. I wrote down the tests you said to do and when I call the endo I will see if they’re there and if not insist they be added. I am.hopeful we can get this all cleared up. My biggest, and maybe irrational, fear is that while we’re waiting on the Dr’s to come out of their comfort zones enough to diagnose him he’s going to have a bad spike and aside from a trip to the er there will be nothing more we can do for him.
While waiting for the Doc if it was my (undiagnosed) child and I did a fingerstick and saw the BG was over 200 then I would go to the ER.
The ER docs are typically good at handling such situations and would be able to stabilize your child. Your family knows what to look for. Chances of this getting way out of control are not likely as compared to families that have no experience and no idea what to look for.
I had always heard that puberty was the most common time for children to be diagnosed with T1D.
I found the following that suggests the same.
Puberty and T1D onset
I suspect the endo in this case most typically sees kids after they were in ER with DKA, dehydration, and BG’s so high they don’t even register on the meter (>600 for most meters).
What’s challenging is what does that same child test like the months or weeks before that point. The up and down readings that you have reported may be typical, but most don’t have a T1D in the family and test as early as you did, or even recognize early symptoms.
I don’t agree with how the doctor responded, although you say he did indicate your son is in the ‘really early onset stages’. Problem is they don’t teach doctors how to treat kids in that condition. They just learn how to treat ‘full blown’, high ketones/BG and in some cases in or near coma. A great doctor, especially knowing there is a T1D parent, would certainly encourage monitoring, and testing, and treat as necessary based on patterns.
Given what you have described, your son IS making insulin, but seems sporadic. If you were to start to administer insulin, how much and when ? What if his pancreas is sputtering and not very predictable. You may want to read the many topics on LADA, and honeymooning, which deals with this unpredictable phase.