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Diabetes - Type 1 Community
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Avatar universal

Is this early diabetes

My son is a Type 1 diabetic, diagnosed at 15.  He has a 2 1/2 y/o son that they had trouble waking one morning.  My son grabbed his tester.  My grandsons blood sugar was 42.  They went to the ER.   Lots of tests were taken, all came back normal.  The endocrinologist they followed up with said his case was not the norm and was odd.   (His A1c was 5.0)  They were told to keep a log of his blood sugars for a couple of months.  Over that time, he has had maybe 3 lows, but, a number of counts over 100 (a few over 200).  He is now awaiting a continuous blood glucose monitor to wear for a few days.  Anyway............the endocrinologist says he's not ready to diagnose him diabetic "yet", but, feels he is starting on that path.  (There are no autoimmune anti bodies present.........leading him to believe he'd be idiopathic Type 1B)   My question is.......is there anything other than diabetes that could cause these symptoms?  Just wondering if there is something not common they may be overlooking.
5 Responses
231441 tn?1333896366
COMMUNITY LEADER
Hi,

Diabetes can be slow or rapidly developing, even in children.  I do not think there is any other cause than diabetes at this point.

Would suggest the parents look into low carb eating for the child to avoid the highs, along with plenty of protein and healthy fats to keep blood sugars stable.

Please have them look up Bernstein Diabetes University, and children, on Utube.  This resource will teach them a lot and may guide them in how to approach this and what to look out for.
2 Comments
What is the exact YouTube video. I am finding a lot of them
Hi
Berstein Diabetes University has over 200 videos.  Look for the Discussion 1 -  "what parents need to know".


https://www.bing.com/videos/search?q=utube%2c+bernstein+diabetes+university%2c+children&view=detail&mid=C0B502FC640F177D25D9C0B502FC640F177D25D9&FORM=VIRE
Avatar universal
I would be finding me a second opinion. If his sugars are running over 200. He has juvenile diabetes.
Avatar universal
Yes!  There are several reasons blood sugar can drop even if you don't have diabetes.  Tumors of the pancreas or adrenal glands can cause this.  Exocrine pancreatic insufficiency (lack of digestive enzymes) can cause this.  Certain nondiabetic specific medications(eg certain antibiotics) can cause this.  Malnutrition can cause this.  Picky eaters can suffer from this.  These are just some of the reasons you can have low blood sugar.  

My youngest son has the same problem your grandson does.  I am Type 1 (age 14 diagnosis).  My oldest son was diagnosed with Type 1 at age 9.  When my oldest son was diagnosed, my youngest son then 5 years old took it upon himself to also pee on the Ketosticks.  We were shocked to see large ketones.  However, his sugars were normal, so we didn't worry too much.  As time passed, we would do periodic ketone and sugar checks.  Sometimes he had ketones and slightly elevated sugars and sometimes not.  His A1C was always normal.  He developed hypothyroidism when he was 9 years old.  When he was around 13 years old he began having issues with low blood sugar.  It seemed he would randomly have severe low blood sugar.  We started to checked his sugars 2 hours after meals, but they were always good.  Please keep in mind that even nondiabetics can have sugars over 200 if they eat food (especially sweets) then test their blood sugar 30 minutes after they eat.  Also, kids have different target ranges than adults.  So then we did the glucose tolerance test.  The results were inconclusive.  His blood sugar ran a bit higher than what was considered normal for the first half of the test, but by the end of the test his sugars were back in normal range.  His pediatrician was ready to diagnose him, but I wasn't convinced.  Neither was my endocrinologist who was following his case as well.  

We decided to look at other possible causes, and after lots of blood tests and imaging to look for tumors and such, we decided to just change how he ate.  He was at the top of the growth chart in height but at the bottom of the growth chart for weight.  We switched him to eating several times a day instead of what he was doing - almost no breakfast, light lunch, a few snacks after school and dinner when I forced him to come downstairs.  As long as he ate something about every 3-4 hours he avoided the severe lows.  Mom and Dad breathed a sigh of relief.  He is 20 years old now and still fights low blood sugar when he goes too long without eating.  What he doesn't have is a diabetic diagnosis.  

My advice would be to not stress too much over this especially if your grandson is a picky eater.  See what the pediatrician thinks about letting your grandson be a grazer, and consult a pediatric nutritionist.  Be proactive about preventing low blood sugar.  Instead of concentrating all his calories at meal time, spread the calories out over the whole day.  Always have a baggie of his favorite snack at hand for him to munch away on and a juice box to chase those scary lows away!  I hope all goes well with his future testing.  Best of luck to your family.    
Avatar universal
Just wondering was your grandson ever diagnosed with t1 diabetes? My son is 3 1/2 and has been experiencing the EXACT same thing since July 2017. He would wake up and be lethargic, crying/winey. And not want To eat or drink anything and then would get really sick and vomit multiple times. One time we decided to test his blood since my husband is t1 (diagnosed at age 12) and so is my father inlaw and sister inlaw. When we tested my son that first time it was at 56 and we immediately made him eat some candy and tried to get him to drink juice (he refused). His blood sugar cane up and he was fine. Those low episodes happened about once every week for about 3 months and his pediatrician told us to just make sure he eats more carbs before bed. So we did. At that time his A1c was checked and was at 5.2. The episodes eventually tapered off and only occurred every 3-5 weeks and we weren’t so worried until just recently approx March 2018. In March he ended up getting the flu and after that we noticed he was peeing ALOT and drinking a lot. He even began wetting the bed occasionally which he’s hasn’t done in over a year (he’s fully potty trained). We began testing his blood again then. His fasting bs was at 138 one morning (which is high) and then a few other times it’s been either low (under 65) or once again high (above 126 fasting for 12 hours). We also started testing him 2-3 hours after meals and he would be above 140 sometimes as high as 198 (that was the highest). Then this past week he woke up sick. We though he was just tired because he didn’t get to bed till 11 the night before (bedtime is 8:30) and so we brushed it off the next morning (8am) when he wasn’t acting quite right. Well then at 10 am he still wasn’t and he began vomiting so we tested him after cleaning him up and his sugar was at 61. We gave him 1 serving of gummy bears (15 g carbs) and waited 15 min then gave 1 more serving of gummy bears. And then tested him 2 hours later. When we tested him he was at 181. Isn’t that a bit high for waiting 2 hours and all he had was 30 grams of carbs?
I’m just so worried about him and feel like his pediatrician doesn’t care at all about our conserns.
1 Comments
Sorry to hear you are going through this with your son.   With my grandson - in October he was officially diagnosed as diabetic BUT the doctors "still" aren't sure what type!  I know, it sounds crazy, but there is a type of diabetes referred to as MODY (Maturity Onset Diabetes of the Young) - which is the result of a mutated gene - that they think my grandson may have.  I had never heard of this type of diabetes..........until my grandson's situation.  It generally presents the same as t1, however, blood tests are negative for the antibodies and anything else that would typically show up.   Unfortunately, many doctors are not to familiar with it, which is the case with my grandson. It is very frustrating.....and he is a patient at a large children's hospital !   Genetic testing is required (which is expensive and not typically covered by insurance) to correctly diagnos it.  

I am glad that you mentioned the history of t1 in your family - because that is a very common trait with MODY.  (But, it can be a spontaneous occurrence.)   A child of a MODY patient has a 50% chance of having it as well and passing it on to their children.  (There are like 11 different types of MODY - depending on which gene is affected.) The treatment for the blood sugars can be very different than a diabetic with t1.  "Some" MODY patients that were misdiagnosed as t1, can switch to oral medications........but, that's a whole different path after correct diagnosis.  

So - to answer your question.....yes, he was diagnosed, but, treatment is still "up in the air".  There is a University in Chicago that researches MODY and does do the testing for free - however, it can take months (due to funding) to get your results.  That is what we are waiting on right now with my grandson.  He (and my t1 son) submitted his test back in December and we are still waiting.  It baffles me that my grandsons doctors aren't really doing anything (in my opinion) other then just "rechecking" his A1c every three months.  It is always in the "normal range" because his lows are negating his highs.  

I know his endo consulted with the Children's Hosp of Boston (which is the hospital that brought MODY to our attention)  and he has spoken to the University in Chicago, but, without the results we are kind of at a standstill.  Luckily, my grandsons highs don't usually go over 200, and do come down pretty quickly on their own.  He does have lows though - often during sleeping hours - so, insurance did approve a Dexcom device for him - which has been the best thing ever to avoid situations during the night.   When my son would go low, it was typically around 4 am.........my grandson seems to follow this same trait - so, the Dexcom alerts us to this in time to treat it.

With your sons symptoms, and family history, I would look into MODY in your family.     Once we have a diagnosis of "type" of diabetes, I will certainly post again.     Please let me know how you make out with your son as well.  
Avatar universal
Addison's
But, I would still favor type-1b as most likely.
I am fighting both highs and hypos myself, after being stable on insulin for 38 years. I am to have a adrenal workup soon.
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