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Old 12-10-2015, 02:03 PM   #31
CherylB
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The Dr you trust is the one who thinks, "What could be causing this non-diabetic child to have chronic, life-long low blood sugars?" and then runs all the tests necessary to one by one, rule out what it isn't until they find out what it is. Period. You keep calling Dr's and explaining the situation until you find one who is willing to perform some tests that check his pancreas and get to the root of the problem.
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Old 12-11-2015, 08:33 AM   #32
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I just got back from my DS's appointment. The Dr. said his ph is 5.7 which is very off, his sugar shows in his urine which means he actually is having high blood sugar and I am only testing during the lows which I why I have only seen the lows. He said his diet has way to much sugar now and wants it all gone except for a small serving of allowed fruit only at bedtime. He put him on the "Bullet proof diet"High fat moderate protein and he has to take digestive enzymes with every meal and he will retest him in a month, at which time he expects to see a huge turn around and if at that point there isn't any improvement we will go from there. It was very eye opening to see that how he has been eating is very bad for him. I cut way back on sugar but now I know exactly where I was going wrong. He eats a lot of nuts which are on the no-no list. Going to be a huge change but he is ready and so am I. I am keeping faith and taking it one day at a time. I love addressing diet before just medicine .
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Old 12-11-2015, 09:06 AM   #33
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Has he suggested a root cause for the issue? It is not normal for a child.
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Old 12-11-2015, 09:15 AM   #34
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msn08 - i took my ds to the top gastro dr's at the university hospitals and they completely failed him - took him to a different internal med dr. out of network who also was very into nutrition and vitamins and she nailed it in one appt. - so keep doing what you are doing you would think the top specialists would have figured it out but they didnt - sometimes they get tunnel vision and cant think out of the box
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Old 12-11-2015, 03:46 PM   #35
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Has he suggested a root cause for the issue? It is not normal for a child.
Poor digestion is at the root, for years my ds swallowed his food whole because of texture issues with chewing so it makes perfect sense that he has had very poor digestion and once corrected he will metabolize food properly and it will get where it needs in his body for optimal nutrition benefits.
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Old 12-17-2015, 04:47 AM   #36
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The eating plan is working, my DS's fasting sugar was 74 today. Its always been in the 40's or 50's so it's normalizing. He feels good and isn't soaking his bed in sweat anymore. he bounded down the stairs today for the first time . I am so thankful!
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Old 12-17-2015, 10:18 AM   #37
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The eating plan is working, my DS's fasting sugar was 74 today. Its always been in the 40's or 50's so it's normalizing. He feels good and isn't soaking his bed in sweat anymore. he bounded down the stairs today for the first time . I am so thankful!
so glad for you - i know how worried we mom's get - keep it up
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Old 01-14-2016, 12:54 PM   #38
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So a month into this special diet and my DS has almost the maximum amount of sugar that the test can read is his urine and is catabolic, ph is 5.3 and his blood sugars are still low. The Dr. did blood test yesterday and we are waiting on the results because he is stumped at how my DS has such low blood sugar but such high sugar in his urine. I have been doing research and I wonder if my DS has glycogen storage disease or some malfunction with his kidney and not diabetes. Will update when I know more.
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Old 01-15-2016, 04:36 AM   #39
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Keep up the good work Mom! You are and will continue to get answers!
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Old 01-18-2016, 08:57 AM   #40
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So a month into this special diet and my DS has almost the maximum amount of sugar that the test can read is his urine and is catabolic, ph is 5.3 and his blood sugars are still low. The Dr. did blood test yesterday and we are waiting on the results because he is stumped at how my DS has such low blood sugar but such high sugar in his urine. I have been doing research and I wonder if my DS has glycogen storage disease or some malfunction with his kidney and not diabetes. Will update when I know more.
well you are on track to nail down exactly what is going on with him - is this doctor and endocrinologist?? you may need to go to further specialists....hope this dr. figures it out quickly for you.
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Old 02-20-2016, 01:05 PM   #41
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Any updates this month? You're doing the right thing to keep after this before it becomes a BIG BIG problem. I hope this doctor can find the answer to this mystery and you can get a proper treatment plan in place for your son. How is his weight doing?
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Old 02-22-2016, 12:47 PM   #42
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Any updates this month? You're doing the right thing to keep after this before it becomes a BIG BIG problem. I hope this doctor can find the answer to this mystery and you can get a proper treatment plan in place for your son. How is his weight doing?
He is being sent to a pediatric genetic testing facility, the Dr. suspects Glycogen Storage Disease. His Cholesterol is 391 and He weighs 64lbs. The Dr. is also sending him to an endocrine Dr. to cover all of the bases but he highly suspects with his history and his lab tests that it is glycogen storage disease and the Dr. He is seeing is supposedly top in the country. I am glad things are finally going in the right direction. I doubt he would make it through puberty without getting this under control.
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Old 02-24-2016, 07:16 PM   #43
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This is great news that they think he has a diagnosis. What would they do for it I wonder?

Praying for wisdom for the doctors and peace for you all.
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Old 02-25-2016, 10:51 AM   #44
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awesome news!!!!!!!!!! so glad you are on the path to fixing this!!!!!!!!!! it might take a while but you will get to the bottom of his problem.
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Old 04-21-2016, 09:04 PM   #45
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How is your son doing???
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Old 04-27-2016, 11:59 AM   #46
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We have been waiting for blood test results for almost 3 weeks. But the Genetic specialist is thinking my DH has POTS like I do so he told me he wants me to track my DH's heart rate and blood pressure during his episodes and so I have been checking it and it is always around 83/54 so this may be a part of the puzzle. I just don't know. The Dr. wants the test results before he can figure out the next step. Just hanging in there.
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Old 04-27-2016, 04:15 PM   #47
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Thanks for the update. Gosh, that is a low blood pressure. Hoping and praying for wisdom for the doctors and a clear treatment path.
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Old 06-07-2016, 08:36 PM   #48
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Update. SO frustrated! My DS wore a continuous glucose monitor for 3 days (it checks glucose every 5 minutes around the clock) His sugar were great during the day but around 4am it dropped to 55 and stayed there until he ate breakfast at 9am. The Dr. said "This is reassuring because it doesn't continue to decrease so his body is doing what it needs to keep him from going into a coma etc...." well yippee Then he goes on to say "If I took 100 kids and tested them the same why this would not happen to them so still is not normal or telling WHY this is even happening to him but the Dr. just says its great that he isn't going lower than 55. I am feeling completely hopeless and I do not think I am ever going to get any answers or help for him. For now the good news is that as long as he is sedentary and eats every 2-3 hours his sugar stays up throughout the day. So now I just have to wake him up and feed him through the night. oh yeah and he has gained 1 lb woohoo!!!
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Old 06-08-2016, 06:07 AM   #49
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I may have posted this already, but try a product called Generation UCan. It is a super slow release starch that runners use, but it was originally developed for kids with glycogen storage disease. They have powder that can be made into shakes or mixed in food, or various snack bars now.

You get it online, and there are different discount codes available. It isn't a cure, but may keep him more stable for longer.

Good luck.
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Old 06-12-2016, 09:20 PM   #50
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Hi,

How horribly frustrating (and frightening!) for you.

You could also try giving him a drink or food with pure crystalline fructose every four hours or so. It not only helps stabilize blood sugars in hypoglycemia, but I've actually seen it help turn a few cases around after a year or two.

Here's a link to a research paper that discuses the use of fructose for reactive hypoglycemia.

Title: The effects of oral fructose, sucrose, and glucose in subjects with reactive hypoglycemia. - PubMed - NCBI

Link: http://www.ncbi.nlm.nih.gov/m/pubmed/6765227/
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