Dr's aren't sure about my baby girl - HELP !

[Ladder223]

My doctors can't decide if my 2 1/2 year old is having symptoms of early onset. I'll give a quick summary of our events over the past 3 1/2 weeks & maybe someone can offer help/suggestions/thoughts - whatever !

- 4 weeks ago ear infection
- 3 weeks ago, check up normal, got shots, urine never checked by ped.
- 2 1/2 weeks ago, one day - peed all day, frequently in pants, I was
concerned but thought I'd give it a day
- a few days later, peeing starts again - in her pants, frequently, large
amount- even babysitter commented on it - frequency and volume
- that day had a friend come over (her dd has D). she had bg of 315 after
a bowl of ice cream. We waited 30 mins she was 285. Called ped. & went
in
- Ped. (2 hours later) had bg of 155 and sent us to ER. They took a1c,
and said no sugar in urine, go home. this was about 8 hours since she had
eaten and bg normal. After they drew the blood, I fed her turkey, cheese
and rice pudding. When they said go home, I said just humor me and check
bg again - 156. We went home.
- In the am, bg was 185, she had cereal & juice and 1 hour later bg was 211
- that day she seemed fine, ate, and numbers ran 173, 167
- that night she ate a BIG bowl of pasta and was 109 before bed
- 12:00 am, vomited all over crib. checked blood immed. & it was 132
- called ped. who said too low for ketoacidosis, check in one hour. in one
hour she was 142, 5:00 am she was 207. At 8:00 am back down to 122.
- had to wait 3 days for endo appt. They wanted to take oral glucose but couldn't get something in her arm, so just took blood. We waited. in the meantime........
- numbers up and down but basically normal. Urinating ok two days, not the next. Occasional highs e.g 204 1 hour after chicken nuggets. 234 (40 mins.after ice cream etc. but for the most part, normal.
- the other day babysitter said she was concerned about her. Very quiet, wouldn't eat, bags under the eyes, wouldn't drink and peed 3x (or 4?) in 2 hours. Again, she had nothing to drink. I tested her, normal. However, it was 2 1/2 hours post food/drink that she had had with me at home.
- I've noticed her pattern. IF she's going to be high, it's going to be between 1 and 1 1/2 hours post meal. By 2 hours she's already going down.
- after this incident, I pushed for oral glucose. Results came back slowly.
First report gave only 1/2 hour, 2 hour and 2 1/2 hour. (because of what I
told them about her "high" time they did blood draw every 1/2 hour)
Anyway, those numbers were normal. We waited two more days for the 1
hour and 1 1 1/2 hour numbers - finally normal. I was stunned. how can
she get so high from ice cream, nuggets etc, but not glucose drink !?
They gave her 1/2 bottle of 50 g. drink - if that means anything.
- at the end of the glucose test i checked her. # 98 Great !
- when we got home I treated her to a happy meal - nuggets and fries. One
hour later she was 235. Dr. said "i'm not concerned with the one hour
number, call me back with a two hour number. I did. at 2 hours she was 187.Left message with dr. who never called me back !
- I have been researching, asking etc. and nobody can tell me what's going
on, if anything. Still waiting for one antibody test - two weeks ago.
- I check her urine frequently, no glucose present.
- sometimes soaks through at night.
- Some days drinks like crazy ( 3 lg. sippy cups in a row!) But most often
normal drinking.
- Keytones only showed when she was sick, and hadn't eaten.
- Yesterday, sick again ! High fever. They tested everything : urine - cbc -
bg, strep, flu swab. All normal. throat was very red so they said it was
viral. this lasted one day and now, fine. Moderate drinking today.
- One pediatrician says no diabetes (he's 80 years old & also told me my other
son didn't have tourettes syndrome..p.s. he has tourettes!)
- The other ped. shows concern, and says that he trusts my concern as this
is my 4th child & I've never been so concerned before with any of the kids.
- I have researched my brains out - I am aware of criteria for dx., I'm aware that they wont' dx. if she's managing ok right now. I'm aware what to watch for.

*** does this sound at all like early onset? ( I think I know the answer, but
I also doubt myself sometimes and wonder if I'm just losing it !)
anything else it could be?
I keep testing urine, and bg but I would like to slow down on the finger
pricks - she doesn't mind it at all, but i feel like sometimes I just do it for
my own sanity !
OK everyone.......let me have it ........give me your thoughts whatever
they might be ! thanks for taking the time to read !!!!

[AlisonKS]

what was her a1c?

[Connie(BC)Type 1]

What is she drinking? Juice, milk, Water? Infections will cause elevated bg in no D people at times.

[Ladder223]

A1C was 5.8 - but if it's early onset, I was told that number doesn't mean anything b/c if #'s are good & bad, average them together and it will come out normal. Not sure if that's true or not.

she drinks milk, water, apple juice - it varies

[LantusFiend]

5.8 is the very top of normal in most labs (although not all), and those numbers sound like the only chance it's not diabetes is that the meter is broke. However, because the blood sugars aren't that high and there are no ketones, my guess is that the diabetes isn't causing the throwing up, although the sickness could make a very early case show high numbers that would otherwise be okay.
Have antibody tests been run?

[Ellen]

The high numbers are not "normal", coupled with the excessive urination... she should be seen and followed by a board certified pediatric endocrinologist. Has she lost any weight?

[Treysmom]

Those numbers are high enough for concern. My son was dx'd with a A1c of 6.0 and a bg of 258.

I hope its not D. You did find a great support for yourself if it turns out to be D.

[Ladder223]

The numbers I've gotten were actually from 3 meters. My neighbor used her daughters meter, then gave me an extra she had, then I bought my own.

She was seen by a pediatric endo. who took blood & will not tell me anything until all bloodwork is back. (she did say the ones we have back are normal)

Antibody tests were done, all back are normal, still waiting for one to come back.

Thanks for all of your quick responses !

[Ladder223]

Not sure if she lost any weight - she was weighed at endo (hasn't been back yet)
weighed at checkup at pediatrician, but they forgot to weigh her again when she was sick the other day ( I asked but we all got sidetracked)
I guess I should start to weigh her at home & keep track. I meant to do that last week, but with 4 kids and all the monitoring of her every move.....I forgot

[Nancy in VA]

I don't think the A1C is a good test to see if they have diabetes - since it measures the past 3 months and it seems pretty clear that your daughter's only been experiencing symptoms for a month.

Over 120 fasting is supposed to be a diagnostic of diabetes. She's woken up higher than that.

Over 200 at any time without illness is supposed to be a diagnostic of diabetes.

I think its clearly early but I think you need to push these endos for a diagnosis so they can start helping you manage it.

So sorry you are going through this.