Thursday, December 2, 2010

We Have A Diagnosis

I'm still sitting here in a bit of a funk. I've gained so many new gray hairs the last 24 hours that I'm going to have to start passing them off as a new trend...platinum highlights! I wonder if that will fly?

So I guess I need to back up...

Over the last few months, Kayleigh has had what we've called the "mystery illness". I blogged a while back about her showing some high blood sugars mixed with some lows. She showed "diabetes symptoms" but never all at once. Sweats. Headaches. Stomach aches. Shakes. Hunger. Exhaustion. Thirst. Yes, my friends, as a D-Mom, my Mommy gut was in full force and it was making me sick to think that I could possibly have another D-child on my hands. So over the last few months, as the symptoms showed themselves, I was armed with a handy dandy glucose meter. The meter confirmed the symptoms...lowest low of 56 and highest high of 182. The doctor passed it off and said it was "hormones". Hmmm...ok but NOT what I wanted to hear cuz I knew SOMETHING was wrong. So we've just kinda dealt with it....UNTIL YESTERDAY!

Kayleigh woke up yesterday morning, not feeling very well. She said her stomach hurt but she went on to school. Somewhere near 1pm, I got a text. "Mom, I'm really sick and I want to go home." Now, Kayleigh is NOT my sick complainer. If shes complains that shes sick, shes REALLY sick! So I told her to call her Daddy since he was home on his day off. She called him and he headed to school to get her....BUT before he could get there something MAJOR happened! She was in culinary class and she said she wasn't feeling right so she told her teacher that she felt sick. He told her to sit down for a minute and she'd be ok. She got back up and she said everything started to get dark and her hearing was muffled. She managed to tell her teacher she felt like she was going to pass out and he guided her to a chair before she fell out. They called for the nurse who ran down with a wheelchair and whisked her back to the nurses office. Kay was feeling dizzy and she gets motion sick so as soon as she got into the clinic, she puked all over the trash can. Her blood pressure was 76/50 and she was GRAY! Yes, her face was white and her lips had NO color! When Daddy got there, she was still shaking but she'd gotten a little color back. Of course, all of this happens on a day that I had to substitute in the office and I was in a panic because I couldn't leave to get to my baby! :( Frankie called me and said she was doing ok and he was taking her home to lay down. When I finally got home, she was able to explain what all had happened and she cried because it really scared her. THATS IT!! Momma bear came out in me because I KNOW there is something wrong and I'm not stopping til we KNOW what it is!

This morning, I called the doctor and got her an appointment. This time we got to see the other new doctor and she looked over Kay's past records and when she came in, she said from what she read and everything that happened yesterday, she could tell us 99% of what she thought it was before even talking to us. HYPOGLYCEMIA. I felt by body sink in the chair and the vomit feeling overcame my tummy. She began to explain everything to us and after yesterday, Kay showed every classic symptom. I stopped her midsentence and explained I already had a child with Type 1 diabetes. She went on to explain the difference. DIFFERENCE? A low is a low, right? Not in this case...Kays pancrease is producing too much insulin...it works...but it's in overdrive. Ahhhhhhh! OK...LET. THIS. SINK. IN. You're telling me...I have a child that produces NO insulin and one that prodices TOO MUCH insulin? She smiled, yes that basically it. Ummmm please excuse me while I vomit and cry out! WTF?!?!?! I'm still sitting in this state of shock. I KNEW something was wrong...I SAW the symptoms....I TOLD the doc her symptoms and yet it took ANOTHER doc and her on the brink of passing out to really see it! So I sat there holding back my tears because I didn't want to scare Kayleigh. My next question to the doctor...NOW WHAT? What do we do? Can we fix it? Can we make it go away? Can we cure it? (choking tears) Basically, the only thing we can do is make sure shes eating every 4 hours...being sure that shes getting the protein to keep her blood sugar up and steady. She needs to carry snacks and glucose tabs (or something sweet) with her at school along with the note they've written giving her permission to have the snacks anytime. We can fix it by making sure she eats properly. No, we can't make it go away. And then she went on to explain that if her pancreas stays in overdrive like it's doing then later on in life she is more at risk for Type 2 diabetes because her pancreas is eventually going to decide to putter out. As you can probably imagine...my next question was...CAN this turn into a Type 1? She assured me that it probably would NOT but she was much more at risk for something like that because of this diagnosis. AT RISK? So now what? I know whats gonna happen...I'm gonna spend my days worrying like I do with Kacey. I deal with Kacey's high much better that I do the lows...WHY? Well for the exact reason that happened yesterday...PASSING OUT or UNCONSIOUSNESS! Thats my biggest Mommy fear! :( So then the doctor said that since we had all the "equipment" for glucose testing then I could do the test on her that they'd do at the hospital. She said she doesn't like to use it as a tool in determining hypoglycemia because so many factors can throw it off but if I wanted to try it then I could. She needed to drink 50g of sugar (OJ was best) and then test her 30min, 1 hour and 2 hours later. She said if she was under 80 at any point then stop the test and eat. So we have to wait for a fasting and then do the test.

Now...Kayleigh fears...
She expressed some concern after we left the doctor along with some tears. She's scared! She's scared of diabetes. She's scared to go low again. She's scared of how nearly passing out made her feel. She's scared someone around her might not know she is having trouble. I'm watching my 16 year old daughter put herself in her sister's shoes and it makes me soooo sad! :( She already has asthma and that in itself is scary enough and she's old enough to remember some of the severe asthma attacks that she has had. She said this doesn't even begin to compare with the fear she felt. She said she felt like she was dying and she was scared she wasn't going to wake up if she closed her eyes. So now what? I've talked to her, explained that as long as she eats she should be ok, but how do you REALLY make them feel calm after such a scary episode? She even went on to ask me if we could get her an alert bracelet with "Asthma & Hypoglycemia" on it so if she passed out then someone would know why. I also told her that we had enough test kits laying around that she could throw one in her purse and when she felt "weird" then she could test and she could know for sure if she was going low and treat herself just like Kacey does. She cried and all I could do was hold her :( It's another time in my life that no matter what I said or did, I still can't take away the hurt and fear. I HATE THIS!!!!

I'm so sad! I'm so mad! I'm an emotional basketcase inside and I can't cry out loud because I'm scared that it will worry Kayleigh even more. I'm not worried about treating her because I'm already a pro at treating lows but I'm just upset that we have to deal with this. I am thankful that we do know whats been making her feel so bad and we can treat it as best as we can.

Guess thats all. I'm gonna try my best to keep from sinking in the funky mess.

16 comments:

Tracy (The Crazy Pancreas) said...

Wow, Jill. I am glad you figured it out. I am glad she made it through that scary low. I am glad she will be ok and it is something you know how to deal with.

I cannot imagine how scary it is for her and for you.

Just wanted to send (((HUGS))).

*sigh*

meanderings said...

My sister and I did the same thing with our thyroids. Hers was in overdrive, mine barely works.
Kayleigh's a bright young lady and she's going to be ok. AND...she has a smart mom who can help!

Wendy said...

Blech.

So thankful you guys have an answer and will be able to start preventing those horrible lows now.

My heart was sinking as you described exactly what Addy's HORRIBLE passing out lows looked like -- right down to the white lips and gray color.

It's sickening.

Never knew how much I took my pancreas for granted.

:) Tracie said...

Oh, Jill.
So glad Kayleigh's ok after all that. How incredibly terrifying!
Jessi has never had a low like that, you gave such a great visual that I don't ever want to see one.

The good thing is.....you know what to do for her. The icky thing is she has to live with this now. Poor baby, I wouldn't know how to feel either.

Kerri. said...

I'm so sorry you guys are going through this, and I can't imagine how you guys feel. You are all in my thoughts and prayers.

NikDuck said...

Thanks for leaving a comment on my blog! It's nice to meet others that live fairly close. I read through some of your blog and look forward to reading more!

Laura said...

Oh Jill - big hugs my friend. I'm crying on the outside. I'm so sorry that she is so scared and you are so sad. I'm sad too!

Damn Pancreases! What the heck??

Praying for you and your sweet family!

Shannon@ The New Normal Life said...

Oh I cant even dream of what you are going through.. i can see my self at the doctors saying the same thing... are you kidding me really!! Im sending big hugs and VA love your way. Im glad we discovered your a neighbor!

Alexis of Justices Misbehaving Pancreas said...

Sending you guys big hugs and prayers!

Kelly said...

Oh Jill...I'm not sure if this will be encouraging or discouraging....but I had this same problem as a child, 20 YEARS before I was diagnosed. So did/does all of my sisters. Granted, none of us ever came to "passing out" with hypos....but I believe the "hypo" stage I went through as a kid was a big part of what led to my T1 as an adult...I think some pancreas' are just faulty and confused!!

As a kid I did have to avoid bagels, sweet cereal and such becuase I would go hypo around 3-4hours later. So, I did the same as we do for Diabetes now, ate extra protein and got rid of high glycemic foods.

As a young adult working in the ER I would test my sugar when I felt "low" and I always came in around 80....now I figure I was used to running higher than that...(like the 100-180 range I speculate pre-diabetes) perhaps a quick drop or the 80 range DID feel low for me. It probably was low for me, just like you said you have seen Kaliegh with a 180 number....I assume you have had her A1c drawn? Maybe if she spikes up "high" she drops fast and that is what she is feeling?

Have her eat often, maybe some nuts between meals every 2 hours? Eat good balanced fats, carbs, protein. You already know all this...
((HUGS)) I can imagine your worry. My Hannah goes through this same thing with feeling "low"...but never has it gotten to this extent. TRY not to worry yourself sick! :(

Joanne said...

So sorry to hear the news, but I am glad you now know what you're dealing with. But seriously, what a kick in the pants... I'd be so pissed off at the irony of it all.

M. said...

Jill, I hope she's okay.

NikDuck said...

Jill, I would love a D-Mom get together! Late January maybe? I am so sorry you are going through this with your older daughter. Based on your comment to me, does that mean they think T1 is inevitable??

NikDuck said...

I forgot to answer your questions...we see Dr. Tabba and Kristen is our Diabetes Educator as well. We love her too! Dr. Tabba is good too...I think he is fairly new to the practice.

Hallie said...

JILL!

OMGsh! I'm so sorry. That just stinks. Poor Kay. Poor YOU!

I'm glad you know what it is and that you can treat it. I'm glad you already know a lot...

But I'm so sorry for the pain and the fear.

Sending you biggie biggie ((Hugs))

Kathy G said...

Oh Jill, I'm so glad you finally have an answer but know it is still a lot to deal with. Know that I'm praying for your and kayleigh.