Question from Hatfield, Pennsylvania, USA:

I come to you today seeking advice/opinions and bearing questions/concerns regarding my almost five year old, average height/weight birth-daughter. This will be lengthy, but I feel it’s important to provide you with as detailed a picture as possible to help you provide the most accurate response, opinion or assessment possible. We have NO known family history of type 1. We have limited access to such information. However, and I am unsure if this will be relevant, I have had intermittent positive anti-cardiolipin antibodies (multiple miscarriages), intermittent low blood protein “S” and I was also diagnosed as having a chromosomal abnormality called methylenetetrahydrofolate reductase (MTHFR). I am homozygous for the C677T mutation. I currently take low dose (81 mg) aspirin and 2 mg of folic acid daily. During pregnancy, folic acid is increased to 5 to 7 mg daily. I was NOT treated with folic acid during said daughters pregnancy (condition unknown at the time), but did take low dose aspirin.

Since April 2006, my daughter has been under the care of an endocrinologist here. Over the course of the prior year, she had experienced the random morning/afternoon “spell,” as I refer to them. During these spells, she would exhibit the classic signs of hypoglycemia… weakness, paleness, lethargy, etc. At the time, I didn’t know these spells may have been hypoglycemia, but I would always offer her juice/milk and a small snack which always revived her in a fairly short amount of time. Her spells reminded me of my own behavior when I was very anemic during my first pregnancy, leading me to assume she was anemic as well. Her spell were very random and sporadic (zero or one per month) and therefore were not shown much concern by her pediatrician until more recently.

Over the past four to six months, her spells seemed to have increased in frequency (about one or two per month) and even one per week for a three week span, but still very random and sporadic otherwise. The increase concerned me and through online searches I often came across “hypoglycemia” while researching. Her pediatrician was aware of my concerns. I borrowed a glucometer so I could test the idea of hypoglycemia. I waited for a spell and tested her, followed by a repeat test which confirmed hypoglycemia at 35 mg/dl [1.9 mmol/L]. I treated her with juice, followed by a snack and phoned her pediatrician with my findings. Another random test on a different day indicated a reading of 250 mg/dl [13.9 mmol/L].

A fasting test was ordered and showed normal results at 91 mg/dl [5.1 mmol/L]. I was advised to watch her closely and a referral to an endocrinologist was given. While waiting for her endocrinologist appointment, which was over a month away, I decided to buy ketone test strips and glucose strips for home testing. I did not find positive glucose, but, at one point, I had gotten a small positive ketone result (unknown blood glucose) and phoned her pediatrician again. The doctor saw her that same day. During the visit, the urine dip showed slightly notable + blood, very heavy + leukocytes as well as trace ketones. A urine culture confirmed these findings, but ruled out urinary infection. I was not given a reason for the high level of leukocytes other then “possible internal inflammation of some kind.” Any opinions?

Immediately following her recent pre-appointment blood draw at the endocrinologist’s office, my daughter lost consciousness. I had given her Pop Tarts about 30 minutes before the laboratory tests were drawn. Fasting was not a requirement, so, I assumed the extra sugar might help her with any side effects from the blood draw. At the time her blood was drawn, laboratory results later indicated a blood glucose of 66 mg/dl [3.7 mmol/L]. Approximately five to eight minutes AFTER the draw is when my daughter fell into my arms, pale and limp. Out of sheer panic and indescribable fear, I demanded she maintain eye contact with me (which she did but very unstable like). Sitting on the laboratory floor with my daughter limp across my lap, terrified out of my mind, I screamed for help and for someone to provide me with juice. She was unable to sip from a straw, I had to dribble the juice down her throat, slowly. After about one-fourth of the juice was in her, she responded slightly more to my pleading, but remained limp. By this time, spectators (nurses, receptionists, I don’t know who else) stood around the laboratory as I begged for someone to help! Finally, a nurse, whom I later learned had diabetes, lifted her from my arms and carried her to an exam room where more juice was given, followed by six cookies when she was finally able to sit up. They attempted a monitor reading right away but after much fumbling, a reading of 94 mg/dl [5.2 mmol/L] was gotten after my daughter had consumed the juice and cookies. The endocrinologist disregarded her scheduled appointment that was a few weeks away. He came in and saw her that day, as an emergency visit. This was the worst spell my daughter has had to date. We were provided with our own glucometer that day and instructed to test six times daily.

Fast forward to early May when my daughter was admitted to Children’s Hospital for four days to run a series of tests to rule out rare and serious metabolic disorders such as hyperinsulinism/tumors, etc. All were ruled out. A 35 gram, five hour OGTT was run; it was said that she “passed.” I am curious about your interpretation of this test. Hospital glucometer results follow: fasting – 84 mg/dl [4.7 mmol/L]; 10 minutes – 142 mg/dl [7.9 mmol/L]; 20 minutes – 189 mg/dl [10.5 mmol/L]; 30 minutes – 190 mg/dl [10.6 mmol/L]; one hour – 181 mg/dl [10.1 mmol/L]; 90 minutes – 115 mg/dl [6.4 mmol/L]; two hours – 129 mg/dl [7.2 mmol/L]; three hours – 113 mg/dl [6.3 mmol/L]; four hours – 66 mg/dl [3.7 mmol/L] (symptomatic for hypoglycemia); and five hours – 84 mg/dl [4.7 mmol/L].

A protein tolerance test was also run on my daughter. I understand that this test is still in the experimental stage, but also curious to know your interpretation. It was said that “normal” individuals will have tightly correlated blood sugars during this test. My daughter showed a consistent dip at first, but recovered. Her glucose readings follow: before the protein drink – 114 mg/dl [6.3 mmol/L]; 10 minutes – 96 mg/dl [5.3 mmol/L]; 20 minutes – 91 mg/dl [5.1 mmol/L]; 30 minutes – 75 mg/dl [4.2 mmol/L]; one hour – 71 mg/dl [3.9 mmol/L]; 90 minutes – 95 mg/dl [5.3 mmol/L]; two hours – 85 mg/dl [4.7 mmol/L]; two and a half hours – 95 mg/dl [5.3 mmol/L]; and three hours – 98 mg/dl [5.4 mmol/L].

A 36 hour supervised fast was also performed in an effort to provoke a hypoglycemic episode under 50 mg/dl [2.8 mmol/L]. This test was halted at hour 26 due to a blood ketone (monitor) reading of 3.7. My daughter’s blood glucose at that time was 55 mg/dl [3.1 mmol/L]. At discharge, it was explained that they could not determine a cause for her hypoglycemia at this time and that I should only test her while symptomatic and report any blood sugars under 60 mg/dl [3.3 mmol/L] or over 200 mg/dl [11.1 mmol/L]. There was no mention of diabetes or otherwise. We left the hospital just as confused as when we entered. I was left doubting my maternal instincts, wondering if the behaviors I was seeing in my daughter were a figment of my imagination.

Within the past two weeks, her endocrinologist informed me that my daughter has “elevated diabetic antibodies” related to type 1 diabetes according to the laboratory tests. More specifically, she has elevated islet cell antibodies and elevated GAD antibodies. I do not know numeric values or if this includes insulin antibodies. I am still waiting on my copy of the dictation. The endocrinologist said she is “predisposed to type 1” and will monitor her every two months. He also said this “could mean something, or could mean nothing.” That was all I was told. I immediately went online to do research and came across the TrialNet Family History Study. Taking note that they were screening for these same antibodies, I called to see if my daughter would qualify. Unfortunately, she was turned down due to no known family history of type 1. Being turned down saddened me considering my daughter carries these very antibodies and its been noted that about 90% of type 1 occurs without family history.

Since then, I have gotten random high blood sugars one hour post meal in the ranges of 147 to low 200s mg/d [8.2 to 11.5 mmol/L], but within two hours, they seem to return normal (70s to 130s mg/dl [3.9 to 7.7 mmol/L]). I have also recorded random lows in the ranges of high 40s to 60s mg/dl [2.6 to 3.8 mmol/L] and these always rise with home treatment. Despite these random and sporadic “out of range” readings, she also tests in the normal ranges often. My daughter has some very irate behaviors quite frequently where she is not consolable, angry, screaming, and making impulsive choices as if she were not thinking coherently and often bounces off the walls (not normal behaviors in comparison to my three other children). These behaviors are enough to make me hold her out of kindergarten an extra year.

Although I do not know if her thirst qualifies as obsessive, she does have a portable potty in her bedroom for nighttime voids. Again, I do not know what constitutes as “obsessive.” She is a VERY hearty eater and often goes through daily phases where she desperately insists that she “needs bread” or “something to eat.” I am currently attempting to record blood sugars in combination with her food cravings. So far, I have found that she demands food both when she is high AND low. I have also taken notice to her eyes. They always appear to have “bags” under them, although sometimes it is less obvious. She also has pale lips quite often, but sometimes while pale, they will have small reddish splotches. She often tells me she needs me to “check her blood numbers.” For the most part, she tests “out of range” (40 to 70 mg/dl [2.2 to 3.9 mmol/L] or 145 to over 200 mg/dl [8.1 to over 11.1 mmol/L]) when she asks to be tested. However, she is not so far out of range that I become panicky.

Just this past Thursday, I had some trouble keeping her sugars up. This was not a normal day for us, but I worry what this might suggest. Although the following breakdown concerns me, she has not continued this pattern. She has since regressed back to the sporadic highs and lows with which I am familiar. Thursday: 8:30 a.m. – blood sugar of 69 mg/dl [3.8 mmol/L] – no ketones; 9 a.m. – breakfast; 10 a.m. – bouncing around – blood sugar of 210 mg/dl [11.7 mmol/L] – small ketones; 11:30 a.m. – symptomatic for hypoglycemia – blood sugar of 60 mg/dl [3.3 mmol/L]; 11:40 – ate lunch; 12:15 – no ketones; 12: 30 p.m. – blood sugar of 173 mg/dl [9.6 mmol/L]; 2:30 p.m. – complained her tummy hurt and had a headache – blood sugar of 57 mg/dl [3.2 mmol/L] – gave her small snack and orange juice; 3 p.m. – blood sugar of 154 mg/dl [8.6 mmol/L].

The reason I am here is to view multiple opinions/assessments regarding the details I have provided about my daughter. I do realize that the medical field sometimes has a broad range of differing “theories,” but this is what I seek out. Many doctors stray away from verbalizing their opinions, assumptions and refrain from suggestions or validation. Although more than likely, each doctor will form their own “theory” regarding medical symptoms, but it often remains unspoken. I respect that doctors must tread lightly when it comes to such situations for professional reasons. As a diabetic novice, I seek all options, assessments and opinions available for my daughter’s sake. I already presume that she may very well develop type 1 in the future, whether near or far but I also hope to educate myself and take all possible angles into consideration.

I understand there are no “definite” answers here, but I come to you with an open, eager mindset and would like to know how other doctors might treat or manage my daughter if she were their patient (medication, meal regimen, etc.). Is there a more accurate way to foresee the development or timeframe of type 1 onset in my daughters case? What constitutes as obsessive urination/thirst? Did her urine leukocytes signal something of importance relating to any of the above? Is it possible that my own diagnosis (listed above) is somehow connected to my daughters situation? ALL opinions and theories are welcomed!

I have spent hours here, viewing responses to other questions mentioning symptoms/sugars very similar to my daughters and it is very often suggested that an antibody test be performed. This suggestion leads me to believe there might be a very defined reason or importance in antibody detection, but other then being a “predisposition,” I’m not completely 100% sure what that might be. In my daughter’s case, having “out of range” erratic sugars and symptoms, knowing that she is indeed positive for the antibodies you speak of, what does this ultimately mean for my daughter?