Ok I am so dang lost. I went to a Endo after my son was having reading went high they made him sick. He also had a glucose drink he failed. Endo ordered test for gene. here is results from 2 yrs ago
GAD-65 AB > 30.0 H C-PEPTIDE 2.1
ISLET CELL ANTIBODY (NEG)
The Endo said lets just watch him for a few months his A1c then stayed below 6 for 6 months so the doctor said he isnt diabetic no clue whats going on. I said what does the GAD mean because other Endo in California said he souldnt have any ment he was a gene carriar, well long story short he said well if you join my study I will show you that means nothing. A few more visitis dealing with him I was gone. Back to pediatriction who said Fine we will send you to the GI doctor see if the nissen fundoplication he had at 1 is the issue. The GI doctor ran test said NOPE he is Diabetic and the Nissen wont cause these issue. Back to the pediatrition who is now lost and said ok well keep taking his reading if you want but if both Endo said he isnt then he isnt. I said FINE then please just how do I keep him from feeling sick when his reading hit over 200 . He had no answers for me. For last 2 years I have been just watching what he eats and making sure he eats good stuff. I also switched pediatricions too since that one was clearly puzzled. About 8 months ago things with son seemed to get worse. He had more episodes of sugar going above 250 and when he wakes it was at least 5 days worth of 140 or higher with fasting. Went to peds and his A1c was 6.5 he said well lets see how he does in 3 months well 3 months later we get 6.9 A1c he put him on metformin said lets check him in 6 weeks. In that time son did ok but he was like never hungry and was so hard for him to take the pill. Yet A1c was a sold 6 at 6 weeks. That was good I though. My son was not liking the metformain neither was i because my son is almost 13 he is 65 pounds he has a nissian so he is small and very thin. The pill made him not hungry and so hard to get it down. I told doctor how we felt and he said I cant make him take it but he needs to even crush it up. I said fine and he is finding us a new endo YAYAYYAYAY. But this week has been awful for my son Yesturday he got up sugar 280 he ate his breakfast went school then at 10:30 i went school took his sugar 304. I said ok if you feel icky go to office all take you in. He got lunch at 11am then went to class 2 hrs later he was cramping and hurting but being a stuburn teen in junior high he wouldnt call me. When he got home at 3:30 I took his BS was 98 and I also did a pee test strip it was the Blues you can get. The ketones was negative yet the Glucose was 5000mg/dl. I hear if diabetic you drop ketones not Glucose. Unless I reading it wrong. My son was not feeling good his stomach hurt i took him to pediatrition and walked right in said he need see doctor. 2 hrs after his last sugar reading he was a 151 and his A1c was a 7. Now the pediatrition said he isnt diabetic. If your diabetic you wont go up that high then crash. No clue if he crashed I took sugar at 10:30 then at 3:30 that is 5 hrs. He feels it is his nissen fundoplication keeping his pancreas from working. Says iit is obviouse his body produced insulin but thinks the pancreas is blocked or scared wont let it thru till it is to much then it bursts through. So now we are back to nothing. He didn't even run more tests on him just the sugar and the A1c. Just take metforman and wait on authorization form New Endo to go thru. He said we need see the GI again. No clue am so puzzled and feel bad my son going thru this stuff and I feel helpless. Sorry it is long. Can anyone make send of it all. Could it be the Nission. School food I am finding out isn't good for him so I need to figure out how to squeeze in own food. I was told meals are appropriate but I don't think so. Metforman seems to helpbut like at dinner he isnt hungry...
Before means reading taken before food was given and all morning ones are fasting 09/26/13 3:30 pm 112
09/26/13 7:24 am 135 Before food
09/26/13 9:00 pm 112 Before bed
09/25/13 3:00 pm 99
09/25/13 7:31 am 132 Before food (Back on Metformin 500MG)
09/24/13 8:05 pm 112 –
09/24/13 3:30 pm 89 –
09/24/13 10:45 am 304
7:30am breakfast he had muffin & juice at breakfast and a dumdum sucker 10
09/24/13 6:33 am 280 Before food
I think since he had an am fasting of 180 it seems he has diabetes of some type maybe but I'm not sure. His c peptide isn't low and according to this link it's normal if it is a non fasting one. He could be type 2.
I'm not sure what effect the surgery he had would have on insulin production. I don't know enough about it. I don't see how it could stop the insulin from working if he's producing it?
This person did have problems with high bg after that surgery but she said her fasting bg was normal, only after meals did it spike high due to rapid gastric emptying.
If you have diabetes glucose ends up in the urine if the bg gets too high, this is how your body tries to get it out of the blood. If bg is above 250 you can start to have ketones also if you're starting to burn fat instead of using glucose as a fuel source due to lack of or not enough insulin.
Can you try to get him to another endo who can maybe help you figure this out?
We have another referal in but could take 4 weeks. The cpeptid test was fasting yes but was done after he had the glucose test. That was bad he failed it yes then was told he was given to much that why he failed it. His a1c at time was 5.6 it was all low. The Endo said he has the Gad so more likely sometime in his life he will develope it no clue when. That was in 2010. Wasnt till a yr ago he seemed to start having issues.his A1c every few months have climbing. The gastro doctor said nope it isnt his Nission Fundalacation. Tonight he has small trace of glucose in urine small trace ketones
Hi, keeping in mind that I only understood about half of your post (Not familiar with some of the issues- can't decipher due to spelling differences- don't have time to Google it all), my first thought would be to get yourself to an actual Diabetes research facility- I guess depending on where you are, perhaps you can do some online searching to find a specific research facility and give them a call. It may not be on the approved doc. list, but seriously, if your son is having readings that are bouncing around this much every day, yet he is super skinny and spilling some ketones- something is obviously not right. I'm just taking a guess here that if you found a juvenile diabetes research facility they'd at least talk to you?? I also agree with another poster, move him to a lower carb diet- so that he doesn't bounce so high because that is obviously a trigger. Also, are you doing any glucose testing on him two hours after food? Along with keeping a food log, doing testing before a meal and then 2 hours after will tell you a lot more about what different foods are doing to his glucose levels. Keep in mind that when a person is 'high' (or above their normal range) it is really really difficult to function normally- I can't imagine what his grades are doing...
Keep hounding the doctors, the endo's office, the pediatrician, etc... Call every single day to find out about any cancelled appointments, share with the appointment maker that this is very serious. Heck, depending on your insurance, what aobut going to the ER the next time he goes high and spills ketones? I know that sounds crazy- but then maybe someone will pay attention to you.
Keep pushing, keep fighting for him, keep up the great work of trying to figure out what in the world is going on.
Good luck- and I'm sorry for your son!
Well last night he hit 300 again I was dont playing around. I took him to the ER who saw him took sugar there by time we got in it was 215. They said good was coming down, but a normal non diabetic will never get readings over 200. They said he is a cool kid but yes skinny and has all signs of a type 1 but that they need sent me to Primary Childrens Hospital 40 miles away. SO off we went at 1am. We get there settled in take urine and we WAIT at almost 3am they take his sugar it is perfect 117.. So they speak to the ENDO on call said check urine if there is ketones then admit if not release do a follow up with the Endo on duty. Fine son pees and shows Glucose in urine no ketones. They also did another A1c by drawing blood from his arm saying it was better and more accurate. Maybe we where getting wrong readings. Here it was 4 am i was not arguing. So we get released saying don't take the Metformin it is not ok for him he is not Type 2 diabetic and right now we have no clue if he is even type 1. His Discharge Diagnoses is Glucosuria Concern for Hyperglycemia. Seems we are back to the waiting game :(
I checked the 2nd link that Meee provided, and sounds similar to what your son is experiencing. It may be an uncommon side effect of the surgery, and doctors/endos are not familiar with it. Can you experiment with some lower-carb meals, low GI foods (glycemic index), and use meals with carbs/proteins/fats together to slow down how fast BG rises ?.
The fact that your son's BG eventually comes down means he does make sufficient insulin. In a 'normal' person, the food gradually moves from the stomach to the intestines, but in your son's case, it may be moving much more quickly.
Reducing carbs will reduce the amount of insulin required, and may prevent his BGs from rising so quickly. Maybe having more frequent, smaller meals is another option.
here's part of the info from Meee's link. In a nutshell,this surgery (nissen fundoplication) often causes post-prandial(or post-meal) hyperglycemia (High BG). Doctors either just don't know this or fail to mention it. In other words, your blood sugar shoots "sky high" after each meal, especially if you are eating any amount of carbohydrates! The reason this happens is because the Nissen surgery often causes "rapid gastric emptying" or "dumping syndrome" because the size and function of the stomach has been modified, causing your food to move much more rapidly into the small intestine, where it gets converted to sugar much faster than normal. Be sure to Google "dumping syndrome" or "rapid gastric emptyting".
oh no, I'm sorry. this sounds like a hard case to figure out. He could be slow onset type 1 and he could also be having effects from the surgery. I hope this new endo can help you and direct you to someone who will help you figure this out. I think the low carb diet will help him either way.
Yeah, I'm just having a hard time figuring out why someone would claim he isn't a T1 diabetic. GAD positive, c-peptide is low, and BG is a bit out of control indicates TYPE 1. Still producing insulin per c-peptide test, but he could simply be slowly losing his ability to produce insulin. He is likely in a "honeymoon period" in which his body is still producing insulin (and at times doing a good job), but it is crashing slowly. Finally, if he is T1 (extremely likely), he should get on insulin quickly (at least slow acting).
Metformin, if used to treat T1 can have some pretty nasty effects because it is a type 2 drug. So it will make him sick, possibly harm his body, and make his blood glucose less stable as his body produces less and less insulin. It might help for a little while, but as his body produces less and less insulin, it becomes more and more problematic. Crushed up and taken in the morning, it will help lower BG around lunchtime, and then lose effectiveness in the afternoon causing some highs. Might be better than nothing until he gets on insulin, but it isn't a solution.
Before I got my T1 diagnosis (as an adult) I was on basal and bolus insulin, but they were still treating me like a T2 with regular metformin, and 5 hours after taking it my BG would crash hard because metformin decreased the amount of glucose my body put out while making the basal insulin I was taking more effective. Then at the 8 hour mark my BG spiked really high because the metformin was out of my system. Took me weeks of extremely aggressive testing and data collection to figure it out.
Nissen fundoplication appears to be a birth defect issue. I'm not really seeing the role it could play with the diabetes.
As for diet, cut back on simple carbohydrates and sugars. Start reading up on food groups, what foods have sugar/carbs in them, and start reading food labels since this is information you'll need to know.
PS Without paragraphs, your post was very hard to read.
His c peptide appears to be normal if you check the ranges from the link I posted. The Nissen F surgery has caused rapid gastric emptying after eating and bg spikes in people who had it so that could be part of what is going on with him.
