Monday, November 9, 2009

To the Tune of "Piano Man"...

"It's ten to two on a Sunday night. Blood sugars were low. I've been feeding glucose tabs like a mom possessed, hoping not to call EMS. Three rounds of corrections and it still won't budge, I am starting to freak. Then low and behold she's at 1-4-9. Yes, now we can both go to sleep..."

It's 2am and the adrenaline coursing through my system is not going to allow sleep anytime soon. Especially if Billy Joel keeps singing this ridiculous diabetic rendition of Piano Man in my head. Sparky and Halo are sleeping so soundly that their ears don't budge as I rummage through the diabetes kit yet again, searching for a new bottle of test strips. Even knowing that a generation ago it was impossible to check one's glucose levels 6 times in 50 minutes as I have just done, without really even making Maya wince; I am cursing test strips, meters, and all the rest. She is used to it by now, but I'm jaded. I'm a technology fiend. I love my iPhone and my Kindle. I'm thinking that if they can send a guy to moon, transplant a HEART, for crying out loud, I should be able to test my daughter's glucose levels without blood and without all of this paraphernalia. Something like that strip thermometer that I use on my kids' foreheads would be nice. I love that thing.

Since 1:05 I've been testing glucose levels, treating, retesting. Since the second check at 1:20, after 12 carbs of pure sugar, 15 minutes of waiting, and a LOWER glucose level than we started with, I've been envisioning ambulance crews and emergency rooms. Flashing lights and neighbors standing in their driveways wearing PJs. Strategizing. At what point do I wake Ricardo? Should I start throwing a few things into an overnight bag just in case? How cold is it outside? Do we need coats? Who will get Lucca ready for school in the morning if I'm at the hospital with Maya? Will anyone take the dogs out if I'm not here?

It's 2:57, Maya is zonked out on the sofa. The TV is blaring. Moose is singing that "jams are the jelliest" on Noggin'. Stop sitting here staring at this computer screen. Go turn off the TV. Joni Hennigan has writer's block. Go to bed.

Sunday, September 13, 2009

Every Little Bit Helps...

I am writing this on behalf of my daughter, Maya, who was diagnosed with type 1 (juvenile) diabetes on July 22, 2008. It is a date no one in our family will ever forget, as it has forever divided our lives into two distinct parts: pre- and post-diabetes.
Only 5% to 10% of all diabetics are type 1. It is not known exactly how one gets the disease, but there is certainly a genetic component, and either a viral or environmental trigger which allows it to develop. This diagnosis means that the body’s own immune system attacks and destroys insulin-producing beta cells in the pancreas. To survive, people with type one diabetes must test their blood sugar level by pricking their finger for blood, and take multiple insulin injections daily.
Maya currently needs 6+ finger pricks, and 6 to 10 insulin injections each day to stay healthy. That means that I, as her mother, have poked my daughter with a needle at least 4500 times in the last 13 months. No matter how much she runs, hides, or cries, these pokes are not negotiable. The complications are just too devastating: blindness, heart attack, kidney failure, stroke, nerve damage, amputations, death.
Maya is doing very well. She does everything any 4 year old girl should do. She takes ballet and soccer, has tea parties, and is very excited to be attending pre-kindergarden at St. Gabriel’s. Her routine is different than it once was. She must be monitored very closely; every carbohydrate she eats must be counted and compensated for with insulin injections. But she is active and happy, and for that we are very, VERY grateful.
The reason I am writing is not just to inform you of our situation and how Maya is doing, but to ask for your support. On October 31st, our family will be taking part in the Juvenile Diabetes Research Foundation’s Walk to Cure Diabetes at Mueller Lake Park in Austin. JDRF is the leading charitable funder and advocate of type 1 (juvenile) diabetes research worldwide. Insulin keeps people with diabetes alive, but it is NOT a cure. It does NOT prevent any eventual, devastating complications. The good news is that a cure is within reach.
This will be an important day for Maya. It will allow us to show her that she is not alone in her fight against diabetes. Money raised on this day will help JDRF to fund the cure. Please consider supporting Team Maya either by walking with us, or making a tax-deductible charitable contribution. Some companies will match donations, so check with your employer about doubling the power of your gift.

We would love to have you walk with us on Halloween morning (It will be FUN, i promise! Costumes are optional; Maya is going as Little Red Riding Hood.) and/or show your support to Maya by making a donation - it's EASY! In the left-hand margin of my profile page there is a picture of a THERMOMETER; click on the SUPPORT ME NOW button and you're there! Thank you. Really.


Saturday, August 8, 2009

Our Diabetes Story...

We have all seen these – notes about getting to know each other, answering weird or spontaneous questions. Well I decided to write one about diabetes and share it will all my JDRF, CWD and other friends with some connection to Type 1 diabetes.
You know the drill, copy the instructions and questions, past them in your own note, read my answers then delete my answers and answer the questions yourself. Then tag other friends to do the same - don't forget to tag me so I can read your story.

1.When were you or your child diagnosed with Type 1?

July 22, 2008; a date that is as indelibly stamped on my psyche as my own birthday. It divides our lives into two distinct parts...pre- and post-diabetes.

2.What symptoms did you notice prior to diagnosis?

*Maya was producing such immense quantities of urine that I was scouring the internet trying to find bigger, stronger diapers. No diaper on the market held up for more than a couple of hours. Because of the huge quantities of urine, she refused to use the toilet and wanted to use diapers round the clock. It was easy not to regard this as a symptom because she was 3 years old, a big girl, and although I thought she should have been "diaper free" by then, she was so adamant that I let it ride, assuming she would go back to panties when she was ready. Also, it was HOT summertime in Texas, so she was drinking lots of water.
*She was drinking CRAZY amounts of water. We all kind of joked about it and thought it was good for her. I carried water EVERYWHERE we went because she got very upset if there was none immediately available.
*She was constantly hungry. And I DO mean constantly. I thought she must be going through a growth spurt.
*She started behaving SO badly that it was putting a strain on my whole family. I almost didn't recognize her as my sweet Maya.

3.How long did you notice symptoms before going to the doctor?

Months. I really have no idea. The symptoms started so subtly and none of them on their own mean anything in a toddler; they were easily justified.

4.Who diagnosed you or your child?

One morning out of the blue I sat up in bed, in a panic, and thought, "Oh my God, Maya has diabetes. I have to take her to the doctor NOW." In retrospect, however, nothing is out of the blue. Months before, I had gone with my husband to see a natural health practitioner about something he was going through. She mentioned, by chance, that some holistic health professionals believe diabetes is caused by a parasite in the pancreas; get rid of the parasite, cure diabetes. I was so enthralled by this random comment, that I started researching on the internet, and literally read everything I could find on the subject. Somewhere in that reading, I must have read about the symptoms of diabetes. The universe works in mysterious ways...

5.Did you try to explain away (rationalize) the symptoms prior to going to the doctor?

Potty troubles? She's only 3. Drinking gallons of water? It's 100 degrees outside. Hungry? She's a growing girl. Bad behavior? She's tired; or, she'll grow out of it.

6.Who was with you at diagnosis?

Just Maya and I.

7.Who was the first person you called after diagnosis?

My husband was in New York on business and I didn't want to worry him until I had all the facts. I had called my sister earlier in the day and she knew I was at the pediatricians office, so I called her as soon as the doctor walked out of the room.

8.Where did you go immediately following diagnosis?

The doctor said to go STRAIGHT to the hospital; I went home instead. I justified it by saying I had to get our things together since I didn't know how long we would be in the hospital. The truth is, I don't think at that point I understood the gravity of the situation and I really just wanted to be in my home for a little while. When we got to the hospital, they had been expecting us for two hours. (As Christina said in her diabetes story, no judgement, please.)

9.How long were you in the emergency room after diagnosis?

Our pediatrician had called ahead and they were expecting us, so after filling out admissions paperwork, we skipped triage, but still had to place her IV and draw blood before going up to our room. That took a couple of hours because Maya was tired, cranky and totally uncooperative.

10.How long was your stay at the hospital?

Two nights. We left after dinner on the third day, feeling totally unprepared, but not wanting to be away from Lucca any longer, since Ricardo was still in New York.

11.Who stayed with your child or you at the hospital at night?

I stayed with her the whole time.

12.Who or what do you remember most from the hospital visit?

They were so great with Maya, and let her wear her own pajamas and clothes while we were there, which was a real issue for her. Right around the corner from our room was an awesome playroom with foosball, air hockey, great art supplies, etc. We spent every spare moment in there. I remember her most standing at the little easel gravely concentrated, paintbrush in hand. The weird part was, she looked fine, in her street clothes, and after the initial trauma of tests and IV insertion the first night, she really had a pretty good time, considering where we were. For weeks after we left the hospital, she asked to go back to that playroom.

13.Did you have any overwhelming spiritual moments regarding diagnosis?

At Dell Children's Hospital you are surrounded by children with every dreadful disease imaginable. It was impossible for me NOT to contemplate the fact that some of those children, who looked TERRIBLY ill, might not be leaving the hospital for a very long time, if ever. I was, and am, SO grateful that our challenge is diabetes, rather than one of the other options.

14.After leaving the hospital for the first time what do you remember thinking while driving?

I remember being very calm. It was like I was watching myself from above, and thinking that I was doing everything in slow motion. It felt like a dream sequence in a movie, and strangely, I remember the drive home and all of my thoughts on the way home, in great detail.

15.Do you remember the song playing on the radio the first time you left the hospital either to collect things from home or after checking out with your child?

The radio wasn't on.

16.Where was the first place you went after checking out of the hospital?


17.Did any family or friends come to stay with you after diagnosis?

She didn't stay with us, but I don't know how I would have gotten through the first weeks without my sister. She stayed with my son while we were at the hospital, visited, and kept us company. Back at home, she helped me sort out all of the diabetes supplies and samples we had come home from the hospital with. She patiently listened as I endlessly babbled endlessly over the phone about everything diabetes, helped me calculate insulin dosages, and dispensed second opinions when I was hesitant to act on my own. I was also very fortunate to have my cousins from Brazil, first Juliana, then Pamela, stay with us for months at a time while I tried to pull myself together. After teaching them each the basics, their presence allowed me blocks of time so that I could work out, have lunch with my sister, or go to a movie with my husband. They were both excellent sounding boards for my endless diabetes questions, as well.

18.How long after diagnosis did your child return to school?

Maya was in a preschool with no nurse and a terrible track record for hanging on to their teachers. I had no faith in their ability to take care of her under these new circumstances. After being at home for over a month, I spoke with the headmistress, intending to withdraw Maya. She convinced me to give them a try, with a new teacher she had hired who was supposed to be permanent. I had training sessions with the teachers and headmistress, and began to trust them enough to at least check her blood sugar and call me if she was showing symptoms. Today, thirteen months after diagnosis, I still return to school for mid morning snack, lunchtime, and afternoon snack because it does not feel right to entrust them with insulin injections and carb counting. Later this month she will be starting pre-k at a new school with a registered nurse on staff. We are BOTH very excited for this change!

19.What was the first food outside the hospital that you had to count carbs for?

Goldfish. 45 goldfish = 15 carbs

20.Have you had any mishaps with medical equipment or medications?

For months, Maya ran and hid every time it was time for insulin. While chasing, cajoling, or struggling with her, I stuck myself many times, narrowly missing my eyes on several occasions, before figuring out I needed to re-cap the pen needle after priming it, even if she is sitting right beside me. You just never know what's going to happen. Why did no one tell me that at the hospital?

21.What was the funniest thing you or your child has said in relation to diabetes management?

For a while, Maya had this thing about putting little bits of (clean!) toilet paper or tissue in her mouth. One day, totally frustrated, I told her very sternly for the 100th time that she is NOT to eat toilet. She looked very chastised and asked, "Why can't I eat toilet paper, Mommy? Does it have too many carbs?"

22.Has diabetes limited you or your child in anything?

Holiday parties seem to revolve around food, even at school. For one recent celebration at Maya's school, I noticed the incomplete parent sign-up sheet already had cupcakes, cookies, chips and juice. Whenever possible I let her participate in all of the activities and pick her up before they start setting up the snacks - it's just too much. I take my food scale to events where I know she will be over indulging in carbs so that I can bolus her as accurately as possible. Besides that, she does everything any four year old would do: jumps on the trampoline; takes ballet lessons, Sportball class and swimming lessons. She will be starting soccer in the fall. The catch is, I have to keep a close eye on her and check her glucose level during these activities for highs and lows. I'm hoping that she will be on an insulin pump someday soon, to facilitate sports activities and allow her more freedom, which I'm sure she will soon be wanting for play dates, etc.

23.How many people do you think you have educated about Type 1 diabetes?

Lots. I tell anyone who expresses an interest in Maya's story about diabetes symptoms, and the differences between Type 1 and Type 2. Last winter I was checking Maya's blood sugar during Sportball and noticed the nanny of one of the other kids paying very close attention. Once Maya was back on the sport court, the girl asked me what I'd been doing. She was very inquisitive and I ended up telling her pretty much everything I knew at that point. A week or so later, armed with nothing but my first name and Maya's first name, she tracked down my home phone number and called to thank me. With the information I'd given her, she had diagnosed her mother's diabetes, and helped to save her life.

24.How has having Type 1 or being a parent of a child with Type 1 changed you?

I have become a diabetes-related research junky. I read every book, article, piece of research I can find about diabetes. I've read relevant pieces in the fields of nutrition, nutrigenomics, holistic medicine, genetics, western medicine, Chinese medicine, Ayurvedic medicine, and scientific research from the US and abroad. I've made changes in my own diet that I had pondered for years but didn't have the courage to make, in the hopes that it will lead me to better health for Maya and the rest of my family. Yoga, which I've always loved, has become a priority in my life because I've realized that I can't take care of Maya if I'm not taking care of myself. I'm hoping that I can teach my children to live their best, healthiest lives by example. I've switched household cleaners, soaps, and laundry detergents, for chemical free alternatives. I'm in the process of removing many of the plastics we use in our home.

It has been only 13 months since Maya's diagnosis and I have no idea where all of this is going. I do know that I feel like a mother with a mission; I'm just not sure exactly what the mission is yet.

Friday, May 15, 2009

Stem Cell Therapy Reverses Type 1 Diabetes in Brazil

(Rough translation by Leslie Cidale of the article by GABRIELA CUPANI which appeared in the FOLHA DE SAO PAULO on April 15, 2009. The FOLHA is the largest newspaper in Brazil.)

A Brazilian study showed that the pancreas of patients with type 1 diabetes is returning to work after infusion of the patients own stem cells, freeing them of the need for insulin.

The results of the research, which has followed 23 volunteers for more than four years, are published in today's edition of the Journal of the American Medical Association.

The authors found, for the first time ever, that the levels of C-peptide, a kind of marker of the functioning of insulin producing cells, increased in patients undergoing the therapy.

C-Peptide is a waste product of the production of insulin by the beta cells of the pancreas. Higher rates of C-peptides indicate more insulin production, and therefore lower risk of complications associated with diabetes such as blindness, heart disease and peripheral arterial disease, which too often leads to amputation.

"C-peptide levels in the study participants not only stopped falling, but rose," celebrates the endocrinologist Carlos Eduardo Barra Couri, of the University of Sao Paulo in Ribeirão Preto, one of the authors of the study. "This means that the pancreas is back to work," he explains. "These patients produce more insulin than when they came to us."

The study participants have on average been off injected insulin for more than three years with good blood glucose control. "We have patients who have been off insulin for four years and eight months with excellent quality of life and no peaks of hypoglycemia," said Couri.

Eight of the twenty-three patients are back on very low doses of synthetic insulin, so there is not enough data to say that the benefits are permanent, according to immunologist Julio Voltarelli, one of the leaders of the study.

But even in these patients C-peptide levels are increased, showing that their pancreases are working better, even if not producing all of the hormone they need.

Type 1 diabetes is an autoimmune disease in which the defense system of the body starts to attack the pancreas. Therapy with stem cells seems to combat this immune failure, but does not recover the destroyed areas of the gland, hence the need to apply it in only those newly diagnosed with type 1 diabetes.


A novel effect of the drug sitagliptin was also noted as a result of the study. The drug, usually prescribed for patients with type 2 diabetes, was given to two of the patients who needed insulin again. After two months of the medication, they were once again free of the synthetic hormone. Today these patients control blood glucose levels by taking sitagliptin, which stimulates the secretion of insulin by the body, once a day.

In 2007, with the publication of the first data from stem cell transplantation, the work received harsh criticism from the international scientific community, which credited the results to a phenomena known as “the honeymoon period”, in which changes in diet and exercise, combined with the medical monitoring, would be responsible for the benefits.

"Today there is no doubt that our results are not due to the honeymoon period," Couri said, recalling that while the first article on the research published in the Journal of the AMA took a year to be accepted, the acceptance of the latter took only two months. “We don’t have the cure yet, but perhaps we are headed in the right direction,” says Voltarelli.

New therapies

The University of Sao Paulo at Ribeirão Preto is still recruiting volunteers and testing less aggressive and cheaper methods of correcting flaws in the immune system. Now they are testing other lines of research in an attempt to turn off the patient’s immune system without using chemotherapy, making use of the so-called mesenchymal stem cells, already present in the body.

Study participants must be between 12 and 35 years and diagnosed with type 1 diabetes within the last six weeks. Candidates may write to