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Conditions and Diseases > Diabetes Forum > Type 1 Antibodies/hypo Spells/highs/lows In 5yr Old???
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Q: Type 1 Antibodies/hypo Spells/highs/lows In 5yr Old???
asked by: Mom*of*4 on June 17th, 2006
New User
Hello,

i come to you today seeking advice/opinions and bearing questions/concerns regarding my 4.10 year old, average height/weight birth-daughter. This will be lengthy (i do apologize, I know your time is most valuable) i'm hoping to provide you with as detailed a picture as possible. We have no known family history of type 1, limited access to such information. However, (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 rx'ed as having a chromosomal abnormality called methylenetetrahydrofolate reductase (mthfr). I am homozygous for the c677t mutation. I currently take low dose (81mg's) of aspirin and 2 mg's of folic acid daily. During pregnancy, folic acid is increased to 5-7mg's 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. (shes not anemic) her "spells" were very random and sporadic (0-1 per month) and therefore were not shown much concern by her ped until more recently.

Over the past 4-6 months, her "spells" seemed to have increased in frequency (about 1-2 per month) and even 1 per week for a 3 week span, some days she will have 2-3 lows a day but still very random and sporadic otherwise. The increase concerned me and through online searches I often came across "hypoglycemia" while researching. Her ped 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 35mg/dl. I treated her with juice, followed by a snack and phoned her ped with my findings. Another random test on a different day indicated a reading of 250mg/dl.

A fasting test was ordered and showed normal results at 91mg/dl. It was advised to watch her closely and a referral to the endocrinologist was given. While waiting for her endo appt which was over a month away, I decided to buy ketostrips and glucose strips for home testing. I did not and still have not found glucose but at one point I had gotten a small positive ketone result (unknown bg) and phoned her ped again, ped 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". During this particular week, my daughter also had very pale grayish stool and a single vomiting episode. She normally moves her bowels right after or during every meal, this particular week she was voiding much less then usual. Any opinions?

She recently had a pre-appointment blood draw at the endo's office, ordered by endo... My daughter went unconscious following this blood draw. I had given pop tarts about 30 minutes before the labs were drawn. Fasting was not a requirement so I assumed the extra sugar might help her with any side effects (dizziness etc) from the blood draw. At the time her blood was drawn, lab results later indicated a bg of 66mg/dl. Approximately 5-8 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 lab 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 1/4 of the juice was in her, she responded slightly more to my pleading but remained limp. By this time spectators (nurses, receptionists, I dont know) stood around the lab and I begged for someone to help! Finally a (diabetic, I later learned) nurse lifted her from my arms and carried her to an exam room where more juice was given, followed by 6 cookies when she was finally able to sit up. They attempted a monitor reading right away but after much fumbling, a reading of 94mg/dl was gotten after my daughter had consumed the juice and cookies. The endocrinologist disregarded her scheduled appt that was a few weeks away. He came in and saw her that day, as an emergent 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 6x daily.

Fast forward to early may, my daughter was admitted to childrens hospital for 4 days to run a series of tests to rule out rare and serious metabolic disorders such as hyperinsulinism/tumors etc. (these *were* ruled out). A 35 gram, 5 hr ogtt was run, it was said that she "passed". I am curious about your interpretation of this test. Hospital glucometer results follow...

Fasting- 84
10mins- 142
20mins- 189
30mins- 190
1hr- 181
1.5hr- 115
2hr- 129
3hr- 113
4hr- 66 (symptomatic hypo)
5hr- 84

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 protein drink- 114
10mins- 96
20mins- 91
30mins- 75
1hr- 71
1.5hr- 95
2hr- 85
2.5hr- 95
3hr- 98

a 36 hour supervised fast was also preformed in an effort to provoke a hypoglycemic episode under 50mg/dl. This test was halted at hour 26 due to a blood ketone (monitor) reading of 3.7. My daughters blood glucose at that time was 55mg/dl. At discharge, it was explained that they could not determine a cause for her hypo's at this time and that I should only test her while symptomatic, to report any bg's under 60 or over 200. No mention of diabetes or otherwise, was made. We left the hospital as confused (if not more so) then when we went in. I was left doubting my maternal instincts, wondering if the behaviors I was seeing in my daughter was a figment of my imagination.

Within the past 2 weeks her endocrinologist informed me that my daughter has "elevated diabetic antibodies" related to type 1 diabetes according to labs. More specifically, she has elevated islet cell antibodies and elevated gad antibodies. I do not know numeric values or if this includes insulin antibodies as well, I am still waiting on my copy of the dictation. Endo said she is "predisposed to type 1" and will monitor her every 2 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. :-(

i have been getting random high bg's 1 hr post meal in the ranges of 147 to low 200'smg/dl, by 2 hours they seem to return normal (70's-upper 130's). I have also recorded random lows in the ranges of high 40's-60'smg/dl and these always rise with home treatment. Despite these random and sporadic "out of range" readings, she also tests in the normal ranges often. Fasting is always normal. My daughter has some very irate behaviors quite frequently where she is not consolable, angry, screaming, she makes impulsive choices as if she is not thinking coherently and she often bounces off the walls (not normal behaviors in comparison to my 3 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 night time voids but again, I do not know what constitutes as "obsessive". She is a very hearty eater and often goes through phases daily where she desperately insists that she "needs bread" or "something to eat". I am currently attempting to record bg's 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" and for the most part she tests "out of range" (40-70mg/dl or 145-200 mg/dl) when she asks to be tested but 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 I am familiar with.

Thursdays breakdown...

* 8:30am (fasting) she was 69. No ketones.
* 9:00am ate breakfast.
* 10:00am (bouncing behaviors) tested 210. Also had small ketones.
* 11:30am (symptomatic before lunch) tested 60.
* 11:40am ate lunch.
* 12:15pm no ketones.
* 12:30pm tested 173.
* 2:30pm she came to me saying her tummy hurt, that she had a headache and needed me to test her. I tested her and she was 57. Gave her a small snack and a little oj.
* about 30 mins later she tested 154.

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... I respect that doctors must tread lightly when it comes to such situations for professional reasons but i'd rather have some idea (even if its not what I want to hear). As a diabetic novice, I seek all options, assessments and opinions available for my daughters 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)? How other parents might handle such a situation? If there might be a more accurate way to foresee the development, or time frame 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 reading about "antibodies" related to t1 diabetes. I frequently come across articles suggesting lab work to look for these very antibodies if a person is symptomatic... In my daughters case, will having "out of range" erratic sugars and the things I have mentioned qualify as being "symptomatic"? Knowing that she is indeed positive for these antibodies, what does this ultimately mean for my daughter? You honesty is valued!

Respectfully yours,
~m
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squashville USA
replied on June 24th, 2006
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Hello
I sent you a pm, I never heard back from you. Did you receive my email? I hope all is well.

Kristina
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underdogga
replied on July 23rd, 2006
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Children's blood glucose levels can change much faster than an adult's so that could explain some of the random and sporadic ups and downs your daughter is experiencing. I would only worry about testing her blood sugar 2 hours after she eats or when she is symptomatic. If you feel like writing down what she ate and when she ate before you noticed any strange behaviors, I think that would be helpful too. My husband has type 1 and his second cousin on his mom's side has type 1. That's all... No one else. I hope everything turns out well. Keep us updated.
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