Totally O/T - Toddler Health Concern**long

alinne1026 · #1 July 12th, 2011, 05:57 PM

Hi,

Sorry this is long...My 2 year old dd has this preoccupation with drink/food that consumes a large part of her waking hours. She is constantly thirsty and will cry and hold her stomach screaming in pain if we don't give in. She also wakes up screaming and crying in the middle of the night for juice. She has typical toddler tantrums but she also sweats a lot in her sleep and is very shaky when she first wakes up in the morning. Part of me has always thought this was behavioral - a dramatic tactic to get attention - but then I started doing some research. Most of my searches turned up symptoms of diabetes, so I immediately scheduled an appt. They ran a screening of her blood yesterday for various things, including one for diabetes. I should have the results back tomorrow but, oddly enough, I recalled an initial newborn screening post that I posted in the Nov 2008 playroom. Even though the screen was negative, she really seems to have some symptoms of hypoglycemia/diabetes and I have a hard time believing it's a coincidence. Here's the original post from Nov 2008:

First off, I have to vent. The hospital lost Kaila's initial heel prick test done in the first 48 hours so I had to take her to a lab at 2 weeks to have a repeat heel prick test done. Needless to say, I was quite annoyed! Then, almost 5 weeks later (a couple days ago), the Pediatrician's office called to say that one of her enzymes was elevated and we needed to take her back to the lab to get blood drawn. The enzyme that was elevated was acytelcanitine (sp) and I have read that this could be linked to a genetic disorder called MCAD.

I am completely horrified at the fact that this could have been identified much earlier. I am also frightened that something could be wrong with our baby. I've read that MCAD is a fatty oxidation disorder in which the body cannot go without food for long (similar to hypoglycemia but worse).

Has anyone had to do additional screenings for their LO after the initial heel prick test? I know each state is different in regards to what they screen for at birth (I am in NY). Any information you have is appreciated. I am very worried waiting for these results....

Now that I found this post, I'm going to bring it up to the doc tomorrow. Also, they may not have this on file since I'm in a new city. I'm hoping that she's fine and the glyco screening that they are doing will return showing 'within normal limits'. I guess I'm just curious if any of you have LO's or have experienced diabetes or hypoglycemia in your own family and if there are any additional symptoms I should be looking for. We don't have any family history of this and it's just so hard to get info from a toddler!

Sorry that I rambled.

.

#2 July 12th, 2011, 06:24 PM

I honestly dont know what to say. In 2006 I was diagnosed with reactive hypoglycemia. I have to make sure to eat something every few hours. Also It gets a lot worse during my pregnancies but daily I have to make sure to eat or I get light headed, and shaky. I actually have a meter I'm supposed to use but I couldn't tell you the last time I even used it since I know to eat often. I also keep peanut butter crackers with me at all times. Also, not sure why but heat make it worse. I dont know if their is any science behind that but it makes it worse for me.

Please keep up posted on the results.

starrsgirl · #3 July 12th, 2011, 07:42 PM

Oh wow....poor little thing. Definitely sounds beyond normal hunger. I hope the test results will give you answers soon. Is she tiny/skinny for her age?

alinne1026 · #4 July 12th, 2011, 07:54 PM

She's actually somewhere between 75 & 90%ile for height & weight. I know weight loss is an indicator for diabetes (type 1) and she doesn't have that problem. I know they checked her glucose yesterday right after she had a juice and it was 82. I guess that # is considered within range but I don't know if that's normal after juice? More questions for the doc tomorrow!

#5 July 12th, 2011, 08:31 PM

I really have no advise....just wanted to say your DD is in my prayers. KUP

AmandaEliz · #6 July 13th, 2011, 04:35 AM

Well an 82 on a non-fasting glucose likely rules out diabetes; it would've been much, much higher. Well, at least in an adult; I'm not sure about children. My Dad is a type II diabetic & they like his sugar to be around 100. Did they test her urine for sugar? There's almost always sugar in the urine for Type I diabetes. The kidneys can't process it & it spills over into the urine. My mom is the office manager at a nephrologists office, so I asked her. She said she wasn't sure about kids though because her Dr isn't a pediatric specialist.

alinne1026 · #7 July 13th, 2011, 07:09 PM

Well, all is well. Her glycohemoglobin came in at 5.1 which is supposed to be right in the middle of the normal range. I told the phone nurse about the newborn screen false positive but they told me to just keep a food/drink journal and monitor any 'symptoms' in the event I have concerns again. I would need to hire additional help to log what that girl consumes on a daily basis....lol

Thanks, everyone.

starrsgirl · #8 July 13th, 2011, 08:49 PM

I dunno....I would say keep looking for answers on this one. It just seems like you are picking up a cluster of metabolic related symptoms...no clue what but too coincidental for me, KWIM? Glad diabetes is ruled out....type I is hard on kids and families.

Daffodil · #9 July 13th, 2011, 09:53 PM

I'm so glad!! Do the doctors have any idea what it could be though???

EquestrianMama · #10 July 14th, 2011, 08:29 AM

Keep searching for answers. I know this sounds weird but Mom's intuition is often right. I have pretty bad hypoglycemia. I'm constantly snacking or sipping on juice. I keep a soda by the bed for at night, whenever I wake up I take a couple sips. I woke up once after not doing that and my sugar was 34. NOT good.