Another Line of Hope for a Cure for Type 1 Diabetes

Researches have found that 2 common Leukemia drugs can cure type 1 diabetes in mice. Todd called a few minutes ago to tell me he had just heard that on NPR. I fell over myself trying to get to the computer to look it up. I found this article:

http://www.reuters.com/article/healthNews/idUSTRE4AG78H20081117

I read it, then cried. This is the third line of hope in the cure for type 1 diabetes that I am clinging to.

Given how bad Allie's A1c's have been in the past year, how sick she's been lately and how bad her vision has been, these little strings of hope are all I have to cling to. They force me to stay on my feet, to keep pushing forward, to keep climbing back up from the depression that hovers at my shoulder every time I see Allie drawing up a syringe of insulin to keep herself alive.

Thank you to all the researchers who continue to search for a cure. I love you all.

Another Bad A1C

Last week Allie had another quarterly exam. Her A1c had gone BACK UP to 9.5.

Sigh.

It's the snacking! She knows it. She doesn't want to shoot one or two units of insulin here and there between meals while she grazes. This is so incredibly unhealthy. I can't get her to stop that habit.

Plus, because she only shoots in her stomach, she's getting insulin lumps which are not absorbing, adding to the high blood sugar numbers.

She shocked me during the appointment when she asked the doctor to switch her from her current routine (Lantus and Novolog) to NPH. I nearly cried. This is going to be so much more stringent; she'll HAVE to wake up at a certain time and EAT at the same times every day. She'll HAVE to snack...and the snacks (along with her meals) will HAVE to contain a set amount of carbs.

STRESS. I AM SO STRESSED.

But something HAS to change. She's almost 15; I can't follow her around all day long nagging her to check her sugar. I don't always catch her when she's sneaking snacks. If she believes this change will help her, then I have to allow her the chance to try.

Even though I'm scared.

But I was scared already.

I've been scared since October 18, 2006.

TEENAGERS!!!

Prepare for a whine session!

Having a teen girl is HARD! Having a teen girl with type 1 diabetes downright sucks sometimes. Sorry, Al, but it does.

Allie tore one of her contacts this morning trying to get it in (she just got them Saturday) and she was frustrated and upset. She had a headache and didn't want to go to school. I sent her anyway, as she has already missed too many days this year.

So she and her brother leave for the bus, I get my 2 year old settled in with 'toons and toys, and I plant myself at my desk, determined to get started on the HUGE pile of work that's been waiting for me since last week which is due on Friday.

A quick dash into the kitchen for water and I notice Allie's diabetes kit lying on the kitchen counter. Huh. Maybe that's just her spare. I pick it up for further inspection. Therein are her needles, insulin bottle, and test strips.

She is at school with no meter, no insulin, nothing.

Sigh. Guess I'll be making a trip over to the school in a little while.

I feel guilty for being annoyed that the diabetes is inconveniencing me, since it does more than inconvenience Allie every minute of her life.

The cure is coming soon. It has to.

Bawling My Eyes Out

Just read this post after visiting the website, Six Until Me, and wondering, "What does 'six until me' mean?"

http://sixuntilme.com/about/2007/09/what_does_six_until_me_mean.html

It made me cry. Go see.

But EMT's Are Even Better!

Is it really morning and did we really make it through the night? Was it all just a nightmare? Nope, I have the pictures to prove it. (And just so you know, I took the pix to lighten the mood. Allie was in the very capable hands of the emergency workers and she joked that at least she'd have something to blog about, so of course, I grabbed the camera).

Allie comes out from her room about 10 o'clock last night and is totally freaked out. She tells me she thinks she just accidentally took 30 units of Novolog instead of 30 units of Lantus (Lantus is a slow-acting insulin that lasts for 24 hours and Novolog is a fast-acting insulin taken with meals). My mind froze in time when she said that, just for a second or two. Then it quickly contemplated the enormity of that statement. 30 units of fast-acting insulin. Oops. Major oops. This was bound to be a repeat of L's extreme low I had just been part of Saturday morning (see post below). Or worse. Much worse.

In order for Allie to pretty much not die from this, we would have to feed her...are you ready for this? 420 carbs. How does a normal person eat 420 carbs in a meal, especially when they've had 3 meals today already? (Just as a comparison, Allie normally take 4-6 units of insulin per meal, on average). Well, Allie realized immediately that there was no way that was going to happen. She was shaking and crying and saying she didn't want to die. She told me to call 911. I obeyed immediately. In the meantime, she sucked down 4 Capri Suns while I called the doc. Doc said just keep feeding her and wait for the ambulance. I didn't think her stomach could hold enough; I kept the Glucagon kit in sight. I was so scared, but kept telling Allie everything would be totally okay.

The EMT's/paramedics arrived so quickly. I love and adore them (thank you, Rural Metro, Southwest Ambulance, and the Sheriff's Office! We love you!). They calmed us down by telling us that if necessary, they would put sugar directly into Allie's bloodstream. That relaxed me incredibly, but my brain could still not think properly. I'm usually good with this sort of thing, but 30 units of Novolog pushed me over the top. I knew we were in for a very long night. (Al finally went to sleep around 1, and I stayed up 'til 2 to continue checking her sugar, which dropped another 100 points by then, but then slowed way down. I got up at 6 to check again and of course, can't go back to sleep...another zombie day...fun.)

I really need to take a more careful stock of what's in our pantry at all times. The EMT's wanted me to get some protein in with her carbs and told me to put some peanut butter on the bagel I had given her. I rummaged in the pantry and the fridge, but no peanut butter, just almond butter which had been sitting for forever and needed stirring. As I struggled to get the almond butter to an edible consistency, I muttered, "Am I the only mom in America without peanut butter? Almond butter? What am I, a hippie?" The EMT's laughed. Laughing is good. If they could laugh, then everything was going to be okay.

Once we felt (and the EMT's felt) that we were out of danger, all the emergency workers left and Allie continued to eat. I lay on the couch and tried to wake myself up from this nightmare. I really thought I could for a minute or two. Then I realized this nightmare is our reality; it's our day-to-day life. It's Allie's reality for the rest of her life unless someone finds that cure.

Glucagon is Our Friend

Saturday started off with a BANG! I've never been so scared in my life.

I had just jumped in the shower and barely gotten wet when Todd opened the door and handed me the phone saying it was one of my best friends (we'll call her "A" for anonymity purposes) and an emergency.

A was crying and her voice was shaking and she told me she had just given her sister (we'll call her "L") a glucagon shot because she was so low she was having seizures.

My heart sank, I went numb. I hung up and threw on sweats and drove over (she's only 2 streets away, so it only took like a minute).

When I got there, the whole family was gathered around L who was sitting on the couch looking totally zombied...glassy eyed, confused. It was heartbreaking. I leaned in to her and asked her if she knew who I was. She said no and started crying. So then all of us were crying. It was so traumatic.

I had A check L's sugar and she was coming up nicely...she was well into the safe range, but her mind wasn't quite back yet. She didn't know her little niece and nephew. She couldn't remember her doctor's name or how much insulin she had on board.

It took a full hour for L to come back fully. By then, she could remember pretty much everything and she was just plain tired. I felt so bad for her.

A, my friend--you handled that SO WELL! I am so proud of you. I know how scary that was and you did everything right! YOU ROCK! I'm so glad this happened at your house and not when L was home alone.

Since then, I've had my eye on Allie's glucagon kit every second. I've practically glued it to her body. You just never know.

Bad "D" Day

I am having a bad D day. I think it was sparked by Allie's dad telling me yesterday that she needed her insulin adjusted because she had been having some crazy lows. He asked me who I take her to to have the insulin adjusted. Answer: me. I adjust her insulin. But Allie seems to have taken care of it herself. She thinks her pancreas might be producing a little insulin because she'll be around 300 after a meal and not bolus much and be around 70 within a hour. She thinks it's because of the homeopathic remedy Dr. Gelburd gave her. Or maybe it's me who thought that. Which of course, sparked this painful little iota of hope in my heart that maybe that remedy is the cure. Maybe it's balancing her system out and those rogue beta-cell-killing white blood cells are going remiss and will rest and allow her beta cells to regenerate, to start producing insulin again. I imagine--for just a hair's width of a second--life without needles, lancets, test strips, glucose meters, insulin bottles, cool packs, keytone strips, fear, worry, panic, dread....

Ah, to dream of having freedom and peace back. It's too painful to hope for; the let down too unbearable to deal with.

I

hate

diabetes.

It comes like a spy, like a sneak in the night and steals your good dreams.

It goes out in rippling waves of unbalanced chaos and wreaks havoc on the inside: the kidneys, the heart, the eyes, the tiny blood vessels. "You look so healthy, it can't be that serious." Ha! That's how the trickster gets you in the end. With a subtlety so practiced and perfect it's not recognizable to the untrained eye.

It follows you around all day, all night, every day. It doesn't give you a break. If you turn your head for a minute, it's there waiting to cheat you in yet another way or steal one more piece of your sanity.

I

hate

diabetes.

And now my rant is over.

I am going to go eat something and feel guilty becuase I don't have to first: test my blood sugar, count the carbs, draw up the insulin, inject it, hope it turns out to be the right amount, suffer a blood sugar high or low if it wasn't.

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if i say it enough, it has to come true, right?

Closer to a Cure

Link to Harvard Science article re: diabetes cure trial
Full article below:

Initial human trial of Type 1 diabetes treatment begun

Tuberculosis vaccine proved promising in mice

March 13, 2008

Emily Parker
Massachusetts General Hospital

Scientists at the Massachusetts General Hospital (MGH) have initiated a phase 1 clinical trial to reverse type 1 diabetes. The trial is exploring whether the promising results from the laboratory of Denise Faustman, Associate Professor of Medicine at Harvard Medical School, can be applied in human diabetes.

A phase 1 trial is usually designed to determine the safety, side effects, and dosage range of a treatment, rather than its usefulness. If the proposed treatment is found to be safe, then researchers may initiate a phase II trial, to test for efficacy, in a relatively small group of subjects.

In previous studies Faustman has demonstrated that mice can be cured of a form of diabetes closely resembling type 1 in humans. Those studies used Bacillus Calmette-Guerin (BCG), a common tuberculosis vaccine, to deplete the abnormal immune cells that attack and destroy the insulin producing cells of the pancreas. The first step in the human study, which is currently enrolling volunteers, is to determine whether the same strategy using BCG vaccination can be used to modify the abnormal autoimmune cells present in type 1, or so-called "juvenile onset" diabetes.

David M. Nathan, MD, director of the MGH Diabetes Center, who is leading the human study at MGH, cautions that this “this is the very first step in what is likely to be a long process in achieving a cure. We first need to determine whether the abnormal autoimmune cells that underlie type 1 diabetes can be knocked out with BCG vaccination, as occurred in the mouse studies.”

“We are pleased to be starting human clinical trials,” Faustman said. “Human trials take time, but we are making the step from curing diabetes in mice to determining whether it will work in men and women with diabetes.”

Type 1 diabetes, which usually begins during childhood or adolescence, is triggered when the immune system attacks and destroys the insulin-producing cells in the pancreas. In the absence of insulin, which is necessary for sugar and other nutrients to enter cells, blood sugar levels rise and can cause a variety of severe complications, including kidney failure, loss of vision, amputations, heart disease, and strokes.

The risk for developing complications is closely linked to the elevated blood sugar levels over time. If blood sugar levels are well controlled, the onset of long-term complications can be delayed, and sometimes largely avoided. However, the intensive, on-going therapy required to maintain near-normal sugar levels places life-long demands on the patient, including frequent blood sugar monitoring and at least 3 daily injections of insulin or use of an insulin pump, along with restrictive diets. Insulin doses must be adjusted based on blood sugar levels, dietary factors, and anticipated exercise. Thus, a cure for diabetes has been highly sought after and has attracted much research interest.

The clinical trial is using the BCG vaccine because it causes a low-grade inflammatory reaction, which in the mouse model of autoimmune diabetes lead to the destruction of the abnormal autoimmune cells. It is a particularly attractive candidate vaccine because it has been used safely for nearly 80 years as a tuberculosis vaccine.

The Phase I trial is being supported largely through direct and fund raising support from the Iacocca Foundation, and through support from other donors and the Massachusetts General Hospital. The Iacocca Foundation was founded by Lee Iacocca and his family in 1984 to fund innovative approaches to a potential cure for diabetes.

Prospective trial participants should contact the MGH Diabetes Center at 617-726-1847.

Very High A1c

Allie had a quarterly checkup yesterday. Her A1c (a test which measures the average blood glucose level over a 3-month period) had gone up astronomically. It was 9.7! If you have a child with type 1 diabetes, you cringed when you read that number, which is what I did in the doctor's office.

I knew that Allie hadn't been keeping a close check on her sugar, and that she has an unhealthy habit of skipping lunch at school, then "grazing" the rest of the day, evening, and night. The doc said something has to change (obviously), because Allie's no longer in the "safe" zone and skyrocketed right through the "unsafe" zone and nearly touched the "danger" zone with her A1c number.

What that means, basically, is that her blood sugar has been consistently high enough to start damaging her kidneys, eyes, and heart and that she's more in danger of going into ketoacidosis which can be fatal. I think she was upset enough in the doctor's office that she will take this seriously and start doing what she needs to be doing to stay healthy.

This disease sucks. I hate that Allie has to go through this; that anyone has to go through this. It's heartbreaking. It's a loss of freedom. WHERE IS THAT CURE?

Symptoms and Diagnosis of Type 1 Diabetes

I've started this blog not only because my daughter has Type 1 Diabetes, but so that hopefully some of this information will be helpful to someone. If you have surfed into this blog because you searched for symptoms you or your child may be having, read on.

Some of the symptoms of type 1 diabetes:

excessive hunger
excessive thirst
frequent urination
sweet or fruity smelling breath
weight loss
vomiting
nausea
abdominal pain
fatigue

Before my daughter, Allie, was diagnosed on October 18, 2006, she had been having some of those symptoms, but not all. She was 12 and sooooo incredibly active with skating (skateboarding), running around, jumping on her pogo stick, etc., that I think she burned up a lot of the sugar that had been accumulating in her blood and her symptoms weren't too dramatic.

It all started with having to pee constantly. We couldn't get through a soccer match without her needing to go. Then on the drive home from the game, she'd have to go. Then once again when we got home. I didn't think too much of it initially. We had just moved back to Arizona from Virginia and it was HOT and so she was drinking a lot of water....

Allie had also lost nine pounds, but I didn't know that until she was weighed in at the doctor's.

She was also eating us out of house and home. She'd eat dinner, then have seconds, then come back to the table once everyone else was finished eating, and finish what was left. Then she'd complain later I never made enough food for dinner. I attributed it to puberty. She had always been a big eater, anyway.

Oddly, the thing that finally made me think something not good was going on was that Allie started having leg cramps in the middle of the night. They would wake her and she'd be lying there screaming. Two nights of that had me calling the doctor--finally. The peeing and hunger had been going on for probably about a month, but in every other way, she was fine. No fever, no loss of energy (I remember her coming in every day to tell me how many continuous jumps she had made on her pogo stick...over 1,000 at a time), so it never occurred to me that something was really, really wrong.

What was wrong was that her body's immune system was destroying the beta cells in her pancreas and her body was slowly losing it's ability to produce insulin and use glucose. Allie was slowly starving to death and I didn't even realize it.

Fortunately, our doctor suspected type 1 diabetes right away and had Allie give a urine sample. It was positive for sugar and ketones (key-tones). In a daze, I asked what that meant, although in my heart I knew Allie had diabetes--even though I didn't quite know what that meant in itself. That was when the doctor told me that sugar shouldn't be there at all, and ketones meant that she was burning fat instead of glucose for fuel and that her body was starving.
We went to the lab for more specific tests and they all came back positive for type 1 diabetes. Allie was admitted into Phoenix Children's Hospital (PCH) and we stayed for three days to learn how to physically survive this disease. I was completely unprepared for the emotional side of it all.

I remember Allie's face when the doctor called with the lab results. I was on the phone with the doc and Allie was standing across the kitchen island watching me. I'm sure my face gave her the answer. I looked at her and just nodded. Her eyes got wide and she smiled--not a happy smile, of course, but one of disbelief.

After hanging up the phone, I told Allie that we had to go pack and that we'd be in the hospital for a few days. I really didn't have any more information than that. She went to her room to pack and I called my husband, Todd, and asked him to come drive us. I was shaking so badly I knew I wouldn't be able to drive us to PCH. My world was disintegrating and I couldn't hold it together.

As Todd & I packed in our room, Allie knocked on our door. I opened it to find her there crying. I hugged her and asked what was wrong (other than the obvious). She asked if she would ever be able to eat cupcakes again (she's an fantastic baker). I half laughed, half cried, and told her that YES! she would be able to eat cupcakes again. I don't know how I knew that, but I felt it was true.

At the hospital later that day, we found out with certainty that Allie could indeed eat cupcakes again. We learned that she would be able to eat whatever she wanted, whenever she wanted, but that she had to count all the carbs in the food (and subtract the fiber since it doesn't affect blood sugar, even though it's a carbohydrate), and then use her insulin-to-carb ratio to calculate how much insulin it should take for her body to use the food she was to consume.

We also learned about correction factors for the inevitable times that her blood sugar would be too high and she would need to bring it back down to a safe level. We learned how to bring it back up with a "quick sugar," like glucose tablets or juice or non-diet soda when it dropped too low. We learned to use syringes and draw up the insulin properly. We learned about the different types of insulin and what they're for.

Allie uses Lantus to handle the small amounts of sugar released by the liver into the bloodstream 24/7. One shot of Lantus lasts about 24 hours. She uses NovoLog, a fast-acting insulin, for meals, snacks, and corrections. NovoLog lasts about 3 hours. We learned an amazing amount of information during our stay at PCH. Then it was time to go home.

I cried a lot at the hospital (Allie was fine with it all and so brave) and cried when it was time to go home. If you have children, you may have felt a small bit of panic at the thought of taking that little baby home and knowing she would be dependent on you to keep her safe. I felt that way taking Allie home with type 1 diabetes. I was scared to death.

I think we experienced her first low the evening after we arrived home. I can't remember the number, but it was pretty low, in the 60's I think. We treated it, it came up, she was fine. I hid in my closet and cried. I cried for our old life. I grieved for Allie's loss of freedom to just grab a snack and eat it without having to count the carbs, draw up insulin, give an injection then wonder if it would be the correct amount. My heart sank every time she left the house. I worried she would go low and pass out in a ditch somewhere, or that she'd go too high and die from ketoacidosis. I just wanted to keep her home all day, every day and stare at her. Of course I couldn't do that. Allie would never have allowed it.

As of this post, it's been a year and a half since Allie's diagnosis. She has handled it well all along and has maintained decent A1C's (a measure of blood sugar over a 3 month period). Having type 1 diabetes doesn't keep her from doing anything she wants to do. Sometimes I keep her from doing things she wants to do, because I'm not as comfortable with it as she is. For the most part, though, I don't hold her back. She's had some scary situations, like going so low at the mall with her friend that it wouldn't even register on her meter. That was almost a 911 situation. Then she had another one of those at the movies; we were all there together and she chugged her brother's root beer and her Icee. Allie's also had days on end that she couldn't get her blood sugar below 250 no matter how much insulin she injected. There have been those 600 days, too. Not fun.

Allie tried the insulin pump for a while, but found it too uncomfortable. I'm glad she tried it though; it changed her. I guess she had lost a little of her infectious zeal for a while after the diagnosis. The pump gave her her freedom to snack back. The Cozmo pump has a little bolus button on the side that we affectionally called "the snack button." We programmed the button to deliver enough insuilin to cover 5 grams of carbs per push. That made snacking sooooo easy! Having that freedom back brought that little spark back to Allie that had been missing. So, even though the pump sits unused on our pantry shelf now, that's okay. It served a great purpose even though in the long run it wasn't for her. Maybe someday she'll change her mind and use it again.