Thursday, October 29, 2009

Discouraged and Humiliated

47 today in the same time frame. Followed by a 418. More dosing changes for tomorrow. I'm so discouraged, I'm speechless about it all.

I searched the Internet for hours today, trying to prove to myself that Maddison really does need a biopsy to rule out Celiac disease. I know all of Maddison's labs came back fine without any antibodies indicating Celiac......but Maddison also doesn't have any anti-islet cell antibodies, anti-insulin antibodies or anti-glutamic decarboxylase antibodies (GAD)!!! Maybe she just doesnt have Celiac antibodies!!?? Celiac's absorption issues would explain alot right now, especially when Maddison has at least 9 red flag symptoms of Celiac disease including bone growth delay and short stature. November 3rd we see the Endo....I have alot of questions!

Strange thing, today Maddison asked me if I think she has Celiac. "Why?" I asked. "Because every time I eat my stomach hurts" she said. -Sigh- I think Maddison is tired of hurting and just wants an answer. So do I.

Being entirely discouraged today didnt stop me from sitting down with the dreaded log book. This is my child here Diabetes! We never give up! So, what did I see? Saturdays and Sundays Maddison hasn't had a low in months. On Mondays Maddison is ALWAYS high. I think that's called Miserable Monday Syndrome. On Fridays Maddison is always low or leaning towards that way. I think thats called "hooray the week is over excitement." Tuesday through Thursdays......are whatever they choose to be. Randomly. Talk about discouraged.

I wish I had something good to talk about today, I really do. Unfortunately, when I picked up Maddison from school she was about to burst into tears. She held them back with all her might until she couldn't anymore, and then she sobbed. I've been dreading this day. Maddison's teacher gives an ice cream celebration party to the kids that meet the addition/subtraction goal for this month. That goal is finishing timed tests in 3 minutes without error. Try, try and try again....Maddison just can't do it. So, now Maddison will sit in another classroom while all the other kids "celebrate" their success and Maddison feels nothing but failure. How nice.

I already talked to the teacher months ago about how I felt this "celebration" was wrong in so many ways. Her suggestion was to study hard. What about the kids that couldn't pass the tests timely but got every answer right? Too bad. What about the kids that DID give their best effort? Now they have to feel bad about themselves because they aren't up to the level of everyone else? Hows that for humiliation? I'm so ticked off about this "celebration" I cant even see straight! On top of the "celebration" being wrong in so many ways, Maddison herself has been through SO much lately. She's already feeling depressed and discouraged in math. THIS was the last thing she needed right now. Did I also mention that Math is right after lunch? You know, the time frame in which Diabetes FREAKS OUT and strikes Maddison with life threatening lows here and there. I cant help but be ticked off for Maddison missing this celebration when she's missing math time most days of the week for a f'ed up disease that wont leave her alone to learn in class!!! UGH!!

Ok, something good.....I will mention our JDRF Walk is Saturday on Halloween! That's something to be excited about! Then its Hannah's birthday! My baby Hannah will be 13!! THIRTEEN!!! Which makes me feel very old! Then the holidays........ewwwww......I could do without those. But, tomorrow is a new day. I think I have a plan. Look forward and not back..........just keep swimming.......

9 comments:

Joanne said...

I'm so sorry Maddison has to go through that... sigh, I am seriously thinking of home schooling Elise.

I don't know much about 504 plans, but don't they prohibit testing when a BG is off? Or am I making things up?

Meri said...

I think she should have been allowed to take the test at a time of day when she has good blood sugars. Before school, or after. We have that stipulation in our 504 plan. She is legally allowed to retake. Regardless...that party is awful. Everyone should be able to celebrate their progress. UHG!

Word verificaton: begono...crazy number days..be gone-o!

Hallie said...

Those "celebrations" are total crap. I totally disagree with celebrating something that is not always attainable or developmentally appropriate for all children. Not cool. I'd be pissed, too.
Just a thought -- and I am so new to the diabetes thing that I'm pretty much clueless-- could the lows gave anything to do with math class? If she's nervous about the time tests or just nervous about math in general? I don't know... just seems like if it's only on school days then something is going on at school. Duh, right? Like you didn't already know that!! I wonder if shed still go low if she didn't go to math after lunch...?
I so wish I was a "diabetes whisperer" and could just make all the bad numbers go away! Hang in there- you are all in my prayers!
Oh, and keep your head above water! I'll send you some floaties!!

Wendy said...

AAAAAAARRRRRRGGGGGGGGGHHHHHHHH!!!!!!!!! OMGSH!!!!! That party thing makes me SO MAD!!!!!!!!!

You tell that Maddison of yours that we'll have our OWN ice cream party -- and TEACHERS who exclude kids having blood sugar problems will NOT be invited!!!!!!!!!

katerina said...

How awful! horrible teacher! I suggest you do your own bigger better celebration with better yummier ice-cream!! right after school. As for the low highs I really dont know. What I have done is minimise insulin and carbs. I found a book called ' the low carb comfort food cookbook" and I've been baking.. we dont have fantastic numbers but it helps.. a bit.

phonelady said...

this is why we (my ex ) and I many yrs ago put our son in private school because of his issues and we really could not trust the public school system too many kids and the schools were over flowing and we found a wonderfull private school that had a full time nurse practictioner and she was great and we never had any problems while he was at school . you almost have to be your own dr kelly and research and research my dear . I would demand if I were you . you know the squeeky wheel gets the grease . good luck and I know how hard this must be . HUgs to you .

Shamae said...

Sorry she has been feeling so crappy. Hopefully you can get answers soon. Sydney has a 504 plan. We have it written in hers to test before exams...esp state exams...and if her numbers are not in the parameters that we set, then she can wait to take the test without penalty until her numbers are where they should be. It is a pretty broad spectrum but it should help. Also, if she feels low during a test, she can stop and check her sugars without penalty.

Amy said...

So sorry Madison is having such a rough year! And SO sorry you have such an idiotic teacher!! urghh.... Hang in there Kelly! I know sometimes it just feels like there is NOTHING we can do to make things better for our kids...just the fact that you are there for her and stepping in to fight these battles will make all the difference in the world to Madison! She has one amazing mama to help her get through this!

Beth said...

Ummm, yeah....what would the teacher do for the kid who is learning disabled and on an IEP for math? No ice cream for you, sorry? Say, oh, you ought to study harder? GAAAAHHHH!! What about celebrating progress - this week you got 5 more correct than last week? I realize that she's trying to celebrate those who achieve mastery, but seriously....that bites. We do timed tests (at the end of the year) and every kid works on which ever test they are ready for, whether it's adding 1 or multiplication - it's called DIFFERENTIATING! And they get a star if they get them all right and a cheapo Oriental Trading trinket. Oh, and some kids get them if they get one row right, or 5 rows right, or whatever is THEIR goal that is appropriate for them.... NOT an ice cream party that makes some kids sit out and feel bad! Holy crow. That just torks me off. I'm sorry, Kel. Poor Maddi has had such a sucky school experience so far....