Saturday, March 27, 2010

Scary Days!

Thursday, I got to see my first real severe hypoglycemia (low blood sugar), but it wasn't Andrew! It was a student of mine. I saw her shaking & asked if she was okay, but she shook her head no & collapsed. She could barely talk, eat, or drink! I knew she needed sugar, but it was so hard to get some into her! I asked a student to get the juice from the fridge that I had kept for Andrew, but there wasn't one. The student went to find real soda and the teacher next door called the nurse. I had glucose tabs in my purse, but there was no way she could chew. I grabbed a lollipop I'd been given for Valentine's thinking I could hold it & remove it if she seized, but she could barely open her mouth & it just wasn't working. I tried a laffy taffy since it was slimmer until the soda arrived. I got more soda on her shirt than in her mouth the first time, but it started to work. Then she was able to drink better with help. The nurse still couldn't understand her name by the time she got there, but she was doing so much better! It was scary, but I'm glad I knew what to do. It was a privilege to hold her, wipe the escaping tears, & be able to assure her she was going to be okay now. It was one of the first few good things that has come from Andrew's diagnosis.

Afterwards though, I felt the adrenaline pumping through my body for the rest of the day. I don't know if I'm more afraid for her or Andrew. It was just upsetting. We've always followed the rule, "Make sure there is always someone around who knows what to do in case he 'needs help' treating a low." The visual of how much help he could need was frightening. Today, I got on CWD (Children with Diabetes) forums and found out that one of the children died from diabetes on Thursday! He was a otherwise healthy 14 year old boy with a twin sister & older brother. He just didn't wake up. They expect the autopsy to reveal low blood sugar. Please pray for this family!!! Please pray for my student too. And Andrew while you're at it! And another family that lost a 13 year old to diabetes last month!

Just for the record, I HATE DIABETES!!!

Thursday, March 18, 2010

A1c & General Update

Today was Vanderbilt Day for Andrew! It was an easy day since Kaitlyn didn't have to have her OGTT. We left at a respectible 8:30 a.m. & were home by 2:30! Andrew's A1c was 7.9, which is up. The A1c feels like a report card in diabetes parenting. I got a C. I was perfectionist student even when the stakes didn't involve the lifetime health of my child. It stinks, but all we can do is try again. Truth be told, we aren't surprised. He ran high after having strep & then had another virus. I was slow in making changes. He has needed corrections at night, but I get nervous about raising nighttime basals. Anyway, we reduced the breakfast ratio (I'm not sure I agree, but we'll try), lowered the Insulin Sensitivity Factor (ISF) so that he will get more insulin to treat a high, and raised the basal in the afternoon on his weekend basal & the nighttime basal on both weekdays and weekends. Next time, they want to give him the pneumococcal vaccine and do blood work to check his thyroid.

Otherwise, Andrew is doing well. He has started baseball and is having fun. I have started reading forums on a website called Children With Diabetes (CWD). It has been very informative, and most of the kids play baseball with their pumps even though Animas told us not to. Our endo also recommended playing connected, so we are giving it a try. Andrew is excited not to have to try and pull tubing from his rear or leg right before a game! So far, he's doing much better connected. He's dropping fast at the end of practice, so we will start experimenting with temp basals soon.

Speaking of experimenting, we had our first successful pizza bolus yesterday!!! I'm sure that doesn't sound like much, but pizza sends him up for HOURS! We have this combo feature on the pump to help with high fat, high carb meals like pizza, but it is experimentation to find what works for you. We have tried so many different combos! After reading on CWD what worked for some of those kids, we decided to try to bolus for all the pizza immediately AND all the pizza again spread out for 8 hours. Yes, we bolused 200% of what he ate. And it worked!!!

Andrew also had his first sleepover with a friend other than our next door neighbor a couple of weeks ago. The mom was wonderful and wanted to take very good care of him. We managed his D mostly over the phone. He called before meals with his number & what he was going to eat so we could calculate carbs. Then he called back if he ate anything extra. He drank milk before bed without insulin to keep him safe through the night. He woke up in the 300s, so we overdid it. Still, he had a great time, and felt fairly normal.

Wednesday, March 3, 2010

The Future of The Cure

Last night, I attended a wonderful lecture by Thomas Brobson from JDRF on research being done to find a cure for Type 1 Diabetes. It was so encouraging! He believes there will be a cure for diabetes, but that it probably won't be one silver bullet. It will probably be a combination of protocols, and he shared some wonderful things happening in diabetes research.

Huge advancements in research are being made in how to stop the assault of the immune system on the beta cells. The anti-CD3 drug shows great promise in stopping the progression of the disease. The data from that trial will be unlocked within the year. Another approach to slowing the immune attack is to induce tolerance with a series of shots using a piece of the protein on a beta cell. This is similar to taking allergy shots & may have little to no side effects.

There has been lots of research in curing diabetes in mice, but not so much in people. In 2005, there were only 5 clinical trials involving humans and no industry partnerships. In 2010, there are 47+ clinical trials and 28 industry partnerships! That means that enough progress has been made that companies believe there is something worth investing in!

One drug is helping to increase the number of beta cells a person has. The study is being targeted at type 2's , but the benefit would clearly carry over to type 1's. If one drug could halt the assault on beta cells and another drug could help create new ones, an effective cure could result! Researchers have also discovered that even women who have had T1 for a long time with little insulin production suddenly grow new beta cells when they are pregnant. The beta cells help cover the increased insulin needs throughout the pregnancy and then are reabsorbed into the body after delivery. Understanding this process may also help in finding a cure.

Mr. Brobson is type 1 himself and has actually worn the artificial pancreas! It is so much better than I thought! It integrates the pump & a continuous glucose monitor. It uses data over the last few minutes to predict where your BG is going & increases or decreases basal rates based on that. Mr. Brobson is a tightly controlled diabetic with an A1c of I think 5.4! He stayed in the hospital for 2 days. The first day he managed his diabetes himself, and the second day the computer program managed his diabetes. The computer did better than he did!!! I saw all the graphs of what happened each day. He had fewer highs & lows, but most touching was how he said he FELT. It was his first stress-free day since diagnosis. For the first time, he could take a break from his diabetes. He didn't poke his finger, count his carbs, or anything. He was stuck in a hospital room all day, but to him it still felt like a cure.

The components of the system - pump sites & CGM sites are getting smaller. Right now, Andrew doesn't want to wear the CGM. The iPro that he wore was a CGM & he doesn't want to wear that much hardwear all the time (see the bionic boy post in October 2009 for pictures!). Mr. Brobson said they are developing a transmitter the size of a button! Andrew might wear that if it meant no more safety checks at school, baseball, etc. If he wore a CGM, I could take the receiver behind the dugout & get a reading without bothering him at all!

The last research front that he mentioned was in insulin delivery. We are still injecting insulin into fatty tissue & waiting for it to be absorbed. Food hits the bloodstream faster than insulin & causes a spike. A healthy pancreas releases insulin straight into the bloodstream. There is a layer of blood flow just beneath the skin. They are trying to develop a patch with no needle that would infuse insulin into the blood just below the skin. It would be great to be free from needles & also to not have the inevitable spike that comes with eating!

Many of these trials will take years to complete & then get FDA approval. I still expect Andrew to grow up with diabetes. I also expect that Andrew will tell his grandchildren, "When I was a child, I HAD this disease called diabetes..."