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Is My 5 Year Old Honeymooning?

Late Nov, I took my 5 yr old dghtr to her pediatrician when she complained of stinging while urinating.  Urine had sugar, finger poke was 252, one hour later, blood glucose normal.  Same thing happend with glucose test--238 but one hour later, normal.  A1c was 5.2 but more recently, was 5.5.  C peptide was .2 but now is .3, after 12 or 13 hours fasting.  We've been monitoring at home and all values normal with the exception of one brief spike to 184 following birthday party and candy immediately before (eating continuously hour or more up until.)  Ipro results of one week's duration had only 2 postprandial excursions that were "high" but quite a few more that were "low."  Has symptoms at night that lead me to believe she's hypoglycemic, maybe reactive, and has never been thirsty or urinated often.  She's caucasian, thin, active.  We've seen endo nurse, but no endocrinologist yet as she doesn't yet meet criteria for Type 1.  Nurse thinks she's "super, super early honeymooning."  Is she?!  Or could she have a pancreas tumor, infection, liver issue, or something?  Could she be hypo but still briefly spike from time to time?
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Avatar universal
I have been there!  I took my duaghter to the doc. with pee issues when she was 2.  Her BG was 350.  Next time we took it several hours later it was 91.  Once more it was 200 and then fine.  At that time her A1C was 5.0 and fine.  Fastforward, now she is 8.  This past summer we started having problems again.  Her fasting BG is elevated anywhere from 110 - 140, but not every day.  Her post meal sugars are on the high side, too.  But not every day.  Some days she is fine. Her A1C has been taken three times in the past 6 months.  Twice it was 5.7%.  I was told by one doctor ti was pre-diabetic and another it was perfectly normal. No answer for me there. THEN she started tanking 30 minutes after her meals. I am not sure why.  Its very unsettling. Her A1C is now 5.3%.  I suppose that her lows brought it down.  I guess that is good?  The doctors don't know why we are getting weird sugars and haven't really done anything.  Since she is not really sick, they aren't interested in her.  Yet I don't WANT her to be really sick.  So, I kept pushing for them to find answers.  FINALLY I think we figured things out... She saw a new endrocronologist last week because I kept pushing!  They told me about  MODY diabetes.  Mature Onset Diabetes of the Youth.  Its rare and not very talked about. Its a genetic mutation and there are 9 different genes that can cause it, I think. Its highly hereditary.  There is no family history of diabetes for us, which makes this even MORE rare.  Testing for it is very expensive and so we won't be doing the testing. But everything still points to it.  People can have the MODY gene and never be diagnosed with diabetes. I guess that is good.  You can go your whole life and never get sick and never know you have this mutated gene.  Some people get diagnosed with type 1 or 2 when they really have MODY.  It can even be responsible for gestational diabetes.  Interesting, right?  They did a fasting glucose tolerance test and c-peptide test ( I think. I asked them to.  not sure if they did) and they are checking for antibodies to rule everything else out.  But I am pretty positive that will come back fine.  I don't believe she has type 1.  Anyway... my point is there are more types of diabetes than type 1 and 2.  So for your daughter maybe you caught her very early for type 1? and she is still having a honeymoon phase where the pancreas is still producing insulin.  OR maybe you can bring up MODY diabetes at her next appointment and see what their thoughts are.  For my daughter we are on a "just watch her" time.  She may  never get sick and just have these higher than average sugars for ever.  OR she may get sick.  I get to just wait and see.  :-\.  But at least I know why... or at least PROBABLY why.  I hope you find answers.  Not knowing *****.  Please keep us informed.  I am interested to see where this goes for you.  
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Avatar universal
Thank you, Sally.  We have an appt. at Texas Childrens Apr 13th, so hopefully, a better idea of what this is or when and if we need insulin soon.
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231441 tn?1333892766
COMMUNITY LEADER
Sounds like something is going on that needs very close watching.

You could try reading Dr. Bernstein's "Diabetes Solutions", which recommends a very low carb diet and exercise for indefinitely extending honeymoon period, even (or perhaps especially) for children.

Would be watching her very closely and doing everything possible to keep this under control.  C peptide is very low...  The rising A1C is also a concern.

I beleive she should see a pediatric endocrinologist for ruling out any other issues....
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