2 weeks ago, my son’s pediatrician told us he thinks my 6 year old son thinks he is in the early stages of type 1. We go to the endocrinologist on Tuesday. He has been having random symptoms for a couple of months. Feeling nauseous, frequent headaches and occasionally saying his heart his “beeping” too fast and hard. He has been complaining of feeling shaky when he gets hungry.
At the doctor he had some glucose in his urine, a random blood sugar was 198. His A1C came back at 6.3. The GAD test came back at a level of 95, less then 5 is normal. His islet antibody and insulin antibody were negative. He seems to have more good days. I have been checking random blood sugars. The highest I’ve seen is 257 and the lowest has been 62 (no on insulin). He seems to hover around 147, seems to be his average.
Clearly, its not terribly abnormal. Has anyone experienced this situation? I am so hoping he doesn’t have it or if he does, I would assume we are very early.
Hi @sullivansb welcome to our forum. Type 1 is typically an all-or-nothing issue. Ok so you may be experiencing the autoimmune battle very early and seeing some high blood sugars here and there but if he has antibodies and has fasting blood sugar above 120 mg/dl on your home blood tester, then it is very likely he will stop making insulin entirely. I urge you to stay in touch with the Endo, because there are other things that need to be ruled out. C-peptide tests can gauge if he isn’t making enough insulin, but so can your home tester. “Not terribly abnormal” doesn’t work here, it’s one or the other. Anyway don’t panic, I know this is hard no one wants to have to deal with this but if you do have to deal with this having the medical team is the most important thing.
Ok thank you. I am anxious for Tuesday to get here.
Hello Sarah and welcome to the forum. It appears from what you describe that he may be heading toward his body stopping to produce insulin all together, but keeping vigilant will keep issues from getting too far out of hand. It can be compared to a car idling smoothly and all of a sudden it starts to miss and backfire and shuts off totally. He may be experiencing irratic insulin production and that causes him to feel the symptoms of things not being right within his body. His appointment with the endo will be the most important piece to figuring out this puzzle. As joe has previously said “not terribly abnormal” is something that is not acceptable in this case. His numbers are good or not good, high or low, with too much fluctuation. Keeping checks on his BGL’s will keep him from having a DKA episode that can cause major issues. If he seems extremely tired, vomiting, breath smells like nail polish remover, or a sent of antifreeze from his pores, extreme peeing with clear urine, along with extreme thirst check his BGL ASAP, and if high take immediate emergency actions. Please keep us informed of his progress and what the endo appointment reveals. Hopefully there will be something that is positive and remember together you and he will get through this and figure it out with medical advise from your medical team.
Thank you so much for that advise. I do feel like that’s probably what is happening, that the pancreas is starting to fail but its not all the way yet. I have been having a hard time accepting it but I’m sure Tuesday, I will get some answers and I can move forward. I myself have Celiac and I had my thyroid removed last October for Graves. I did request a thyroid panel on him and its normal. I plan on asking about Celiac as well. I will take great care of him either way:))
Hello again Sarah. There is one other issue that I thought of you may want to try to do. Not knowing his diet habits, but if possible you may want to limit his sugar intake like regular sodas, candy, cookies, cake, etc. Carbs are another issue that can cause BGL’s to go high. If you can substitute sugar drinks with diet sodas and flavored water like from Wal Mart. They have carbonated flavored water like Fuji apple, dark cherry, etc. that taste pretty good and a large bottle costs .57 here. This may help him get by until Tuesdays endo appointment. I hope this helps.
Yes, that’s good advice. We have started to cut back on sugar. We have given him a strictly protein diet 2x, to see how he handles it, he seems to stay lower, around 75-80. Both of those times we had 2 episodes of him dropping too low. I think part of it is he’s not feeling as hungry and is not recognizing hunger until its pretty low. That’s a question I definitely want to ask. It seems we need a balancing act and I don’t know enough yet to understand that.
Hello Sarah, your momma bear instincts will prevail. Keep in mind that the endo you want in your corner should be pediatric T1D experienced. You and your little man have got this, and we’re here for you when you need to vent. 
@sullivansb Welcome Sarah, to the JDRF TypeOneNation Forum! You are wise coming to this Forum for some “learning”, and to prepare yourself just-in-case. I’m not a medical provider, and my observations are based on what I’ve experienced during the past seven decades learning about my diabetes management.
You ask if anyone else has experienced what your son is now feeling: in retrospect, I did notice for a few years what I hear is telling you about but as a teen, I didn’t tell anyone except on really “bad” days. Fortunately, you now have some wonderful lab-tests [some of which I later participated in the development] to help you prepare yourself and your son. Keep in mind, that a chance still exists that your son’s autoimmune system may learn that beta-cells are NOT enemy and he may never develop Autoimmune [TypeOne" Diabetes.
Do stay observant, use a notebook to record what you observe so you can share the information with doctors. Oh, hope for the best! Encourage your son [and yourself] to eat well, and stay active - include an “activity note” in his diary. “Eating too much sugar” does not cause T1 Diabetes, but if you notice it is after he does consume carbohydrate laden meals that his BG Level is high, this information needs to be shared with his doctor.
The good news that I will share from my long experience living with diabetes, is that diabetes will NOT prevent him from “doing & achieving” . He can, and will be able to live a full, active and, productive life. And maybe later on when he is in his eighties, his daughter and granddaughter will appear on Father’s Day to prepare and present an awesome feast - complete with “carb-laden” foods - and somehow my wild guess at the insulin dose has kept my post-meal glucose below 145 mg/dl.
Hi @sullivansb and welcome to the forum. My best advice is, stay calm and observant as you wait for your appointment on Tuesday. If he is diagnosed with Type1, as someone has already said he can live a full and productive life - some of us on the forum have had diabetes for 5 or 6 decades and are going strong!
As you probably know, Type1 is an autoimmune condition, and people with one may develop another or others - but that is not necessarily the case. I did develop an underactive thyroid years ago. I thought I inherited it from my mother (who was not diabetic) - that may or may not have been the case, and I manage it easily with oral meds. For my last endo visit I was surprised to see my doctor ordered some tests for Celiac (also auto-immune). At our discussion in the office I asked if something pointed to it and she says she tests her patients periodically. It was normal.
So wait and see what the doctor says, and if it is Type1 know you have tools at your disposal now that we never dreamed of when I was diagnosed.
Wishing you all the best.
I’m glad you enjoyed your celebration. Thanks for the encouragement.
Update. We went to the endocrinologist yesterday. I’m relieved because he is not needing any treatment at this point. The physician said he suspects this a very early start of Type 1 but he can’t say 100 percent. He is doing another antibody test, Ia-2A, because his GAD is positive but the other 2 are negative. He was a little confused as to what his symptoms would be coming from because he said this early he would not expect to see any. My son mostly has symptoms with the hypoglycemia, which he said would not ne uncommon. These antibody tests confuse me a little bit. I do understand the autoimmune process and I understand an attack has been started since he’s positive. What is hard is how he may or may not go on to develop type 1. I didn’t realize it could possibly not develop even tough its started.
That is reassuring news Ms. Sarah. We know that waiting for test results and pondering the future “what ifs” can take a toll on you so take time to get your breath and be vigilant for signs and syptoms if he does become Type1. Just remember to watch for the signs that we talked about before like keeping checks on his BGL’s will keep him from having a DKA episode that can cause major issues. If he seems extremely tired, vomiting, breath smells like nail polish remover or fruity, or a sent of antifreeze from his pores, extreme peeing with clear urine, along with extreme thirst, belly pain, check his BGL ASAP, and if high take immediate emergency actions. Take care of yourself and your little man and please keep us informed on his progress, we’re here for y’all.
Glad you are seeing an endo. Have them also check serum D3. You may want to look at preventt1d.org and join the FB pages, prevent autoimmunity. If diagnosed, you also may want to eead the Poseidon protocol at www.diabetesresearch.org/Poseidon
His second antibody test came back positive, the I2-A. I’m waiting to hear back from the doctor but from what I understand that means we are in the early stages. I’m thankful we are early and no insulin needed right now.
I’d always rather know than not know. Sounds like you’re on a good path. Did he get checked for celiac, too, or not yet?
Thank you Ms. Sarah for the update, Keeping an eye on things is the most important job right now. Your vigilance has proven to be invaluable on getting an early diagnosis. Please keep us informed of his progress and continue to monitor him. You’re his guardian angle that other T1D’s can truly appreciate. Job well done.
Yes and thyroid antibodies,all negative.
Thanks I appreciate that. I have called the office a few times because I’m a little confused as to what it means now that he has 2 positives and some blood sugar abnormalities. I don’t understand if this means yes he is developing it or does it mean he’s at a very high risk to develop it. It’s a whole new world I’m learning.
Hi Sarah @sullivansb , to look at the positive side, there are people who have had rwo or three “positive test results” who years later had not developed into diabetes. Hopefully, your son fals into this category.
The main thing you can do now, and your sone as he grows older, is to be aware and observant.