Monday, November 2, 2009

Unaware and TRUST your motherly instincts!!

Mondays have been hard for me lately. Every Monday starts the school week over, and each Monday that rolls around I fight to stay sane. Nervous. Scared. Worried. Every Monday I'm faced with asking myself what this week will bring for Maddison's blood sugars. Will she be back to running high? Will everything be good and then BAM! The lows come back? Mondays are not my friend. Especially not today.

Somehow I forgot to re-set my alarm after Maddison's 3am check. Probably because I was half asleep. So I leapt out of bed an hour later than usual this morning, school was to start in 15 minutes. That's never a fun way to start your day. Let me back track for a minute.....Saturday and Sunday Maddison did fine blood sugar wise all day, I even let her run a bit high because of Fridays low at school. Not one low all weekend until Sunday late afternoon which resulted from Maddison zooming around on her scooter and not coming in for a snack like she knows she should have done. I grabbed Maddison's meter and went to test her. She was 52. She didn't have a low feeling what-so-ever. Maddison has become unaware of her lows, which makes me a nervous wreck inside.

After 15c of juice Maddison was in the high 300's. I'm pretty sure that was a rebound. After rebounding, Maddison had a meltdown. She was very angry and mouthy to her friends. How do you excuse that? Knowing that Maddison just went through hell and back with her blood sugars, I had to distract. I apologized and explained to her friends, then I took them all for a walk. Maddison was feeling 100% better within a few minutes. Damn this disease is so complicated!

Anyway...back to this crazy Monday. What to do with insulin dosing for back to school...... Think drastic knowing lows like school this year! Zero basal for several hours prior to the problematic 9:30am time frame. 20 extra carbs without insulin for breakfast. Being that Maddison's breakfast was so late today, she wouldn't need to be checked at that normal time and could wait for lunch to check. As the 2 hour PP time rolled around, I felt like I wanted to puke. Literally. I was sure my nausea was nervousness in waiting to hear Maddison's number from the school nurse. Now I'm thinking it was motherly instinct. I called the nurse and asked her to check Maddison NOW to make me feel better. She called Maddison down to her office after telling me that "if Maddison felt low she would come in." NO I explained.....Maddison isn't feeling her lows! JUST DO IT!

35. Sitting in class at 35 without a hypo feeling what-so-ever. 20 extra carbs for breakfast. Same old same breakfast. A Zero basal rate. I don't understand. Hypo unaware. I can't help but feel like a total failure even though I know I have done everything right. How could we get to this point? What in the WORLD is going on? Maddison has had 8 blood sugars under 30 this year at school. First it was just after lunch. Then those lows disappeared and moved to mornings. MANY 40's and 50's and one LO. I immediately called the Endo. I had to leave a message. No one ever returned my call. Alone with this SCARY, CRAZY disease!! No one to make it right except ME!!

By snack time Maddison was 88 which is almost 3 hours after lunch. Seeing the 88 pop up in an email from the nurse, I wanted to just break down and cry. I'm scared to death to have Maddison be that "low" now. What do I do for the snack bolus? Do I decide to cut her insulin out for her snack? We have NEVER had lows this school year after snack time, so I thought Maddison would be fine with the normal bolus for her carbs. I should have listened to my first reaction of fearing the 88. An hour later I started to second guess myself, so I called Josh from work asking him to check Maddison as soon as she got home from school. That would be 1 hour after her snack. Maddison was 24. TWENTY FOUR. Josh immediately re-checked the 24 hoping it wasn't true. 241 stared back, so Josh assumed the 24 was wrong. ((WHY DO PEOPLE DO THAT!!??)) He doesn't understand the rebound effect no matter how much I explain. Two SERIOUS LIFE THREATENING LOWS IN ONE DAY. Maddison was talking and seemingly fine. But inside, insulin was sucking the life right out of my baby. Coma, seizures.... Diabetes could have taken her LIFE. TWICE IN ONE DAY.

Is this seriously happening? WHY!!?? Now all of a sudden we have lows in this time frame too? SOMETHING isn't right. I wont let Maddison go under 250. I cant. That would be too dangerous. Are these lows going to strike at night any day now? What am I supposed to do!!?? Headaches. Stomach aches. Mood swings. FEAR. Maddison and I are both a mess.

The good news is, tomorrow is our 3 month appointment with her Endo.
If Maddison's A1c comes back reflecting these HORRID lows, its gonna be bad. I will lose it. I will have a serious breakdown. RIGHT. THERE. IN. THAT. OFFICE. It wont be pretty. Josh has this week as a vacation week and is off work. He will be right there with me, thank goodness. Tomorrow morning? Every damn day we start over don't we? I guess I don't give any insulin for breakfast. I'm so ticked off that the Endo's office never called me back today. I guess we really are alone in managing this disease aren't we?

I've considered everything in fighting these lows. Is the pump dosing incorrectly? Is Maddison's pump site hitting a muscle? Is it the arm sites vs the butt sites? Is Maddison throwing away her food? Is she running wild at recess? Is the school nurse counting her carbs wrong? Am I programming something wrong in her pump? Sensitivity? Basal? Bolus? Weather? Growth spurt? Puberty? Stress? Illness? Depression? Am I being too slow in making changes? Am I missing something? What in the HELL IS HAPPENING!!?? CGM is on its way, again. I dont want to force Maddison into wearing another damn machine. But now I have no choice.


Anonymous said...

OMG! Dropping on no basals? These numbers are crazy! I honestly think the theory that they still produce beta cells but their Tcells kill them off immediately may be true. We have had drastic reductions by less than half, at times, but never no basal at all. Cgms is awesome and I can tell you if you got the Minimed and Madison can't tolerate it, go right over to Dexcom. Huge difference in the comfort level of the devices, although some disagree. I have seen a lot of the adults have switched from Minimed to the Dexcom. DN is hypounaware all the time but ONLY if sitting down. If standing up, she does feel lows. By running them a bit higher for a while, they can regain awareness sometimes. Good luck with the cgms, be aware there is more than one brand, if uncomfortable. Yes, I agree she needs one right now. Cgms will give you some peace of mind. And Maddison too!

Anonymous said...

I'm sure you have already done this, but the 34 two hours after a meal..... I would increase the insulin to carb ratios for breakfast. Would check lunch and dinner too for this as well. Crazy........

Meri said...

You might of delt with this already, but I would toss that meter she uses at school. It seems impossible to me that she would test so low one second and the next already be up so high the next second. Maybe she is fine on the weekends because her meter is different at home. (Unless you use the same one everywhere.) I don't trust it. Send another meter to school if you have one and see what happens. Call the company and explain what is happening. Its worth a shot. Good luck!!! I'm so sorry. THis all totally bites!

phonelady said...

i was going to say the same thing and Meri got to it first . Meters are different and yes toss that one at school seems like to me it is messing your numbers and your head up just because of how you say that she is at home . Get a hold of the meter company and let them know what the meter is doing they might just send you a new one to leave at school . Hugs to you I know you are a nervous wreck .

Anonymous said...

AND, must add to my post. Do check the pump. There are a few people who had excess insulin delivered via their pump (one on CWD); saw a post about an adult young man whose Minimed pump malfunctioned, giving him too much insulin (older model). Minimed will send you something in the mail to test pump with (its a plastic piece). The high after the low, with a low of 24, I would assume that's a rebound blood sugar.

Hallie said...

I'm so sorry, Kelly. I wish I had a magic answer for you. I, also, would call the company. It's worth a shot. We had a few #s like that once - a low then 10 minutes later a HI. The company sent me new strips and a new meter overnight. No cost. At least it would rule out faulty equipment. I will be thinking and praying for you. You are a great Mom and you are doing a great job. I don't care what the numbers say. I would have lost it long ago. You're one tough cookie. Hugs, hugs, and more hugs!