Info Gathering

Doing some information gathering online and thought this was too good not to share.  It changed my 13 year old's mind on participating in the TRIALNET studies.  Only with Science will a cure be found.
Diabetes Type 1
YESTERDAY

• In the 1950s, about one in five people died within 20 years after a diagnosis of type 1 diabetes. One in three people died within 25 years of diagnosis.
• About one in four people developed kidney failure within 25 years of a type 1 diabetes diagnosis. Doctors could not detect early kidney disease and had no tools for slowing its progression to kidney failure. Survival after kidney failure was poor, with one of 10 patients dying each year.
• About 90 percent of people with type 1 diabetes developed diabetic retinopathy within 25 years of diagnosis. Blindness from diabetic retinopathy was responsible for about 12 percent of new cases of blindness between the ages of 45 and 74.
• Studies had not proven the value of laser surgery in reducing blindness.
• Major birth defects in the offspring of mothers with type 1 diabetes were three times higher than in the general population.
• Patients relied on injections of animal-derived insulin. The insulin pump would soon be introduced but would not become widely used for years.
• Studies had not yet shown the need for intensive glucose control to delay or prevent the debilitating eye, nerve, kidney, heart, and blood vessel complications of diabetes. Also, the importance of blood pressure control in preventing complications had not been established yet.
• Patients monitored their glucose levels with urine tests, which recognized high but not dangerously low glucose levels and reflected past, not current, glucose levels. More reliable methods for testing glucose levels in the blood had not been developed yet.
• Researchers had just discovered autoimmunity as the underlying cause of type 1 diabetes. However, they couldn’t assess an individual’s level of risk for developing type 1 diabetes, and they didn’t know enough to even consider ways to prevent type 1 diabetes.

TODAY

• The long-term survival of those with type 1 diabetes has dramatically improved in the last 30 years. For people born between 1975 and 1980, about 3.5 percent die within 20 years of diagnosis, and 7 percent die within 25 years of diagnosis. These death rates are much lower than those of patients born in the 1950s, but are still significantly increased compared to the general population.
• After 20 years of annual increases from 5 to 10 percent, rates for new kidney failure cases have leveled off. The most encouraging trend is in diabetes, where rates for new cases in whites under age 40 are the lowest in 20 years. Improved control of glucose and blood pressure and the use of specific antihypertensive drugs prevent or delay the progression of kidney disease to kidney failure.
• Annual eye exams are recommended because, with timely laser surgery and appropriate follow-up care, people with advanced diabetic retinopathy can reduce their risk of blindness by 90 percent.  A new study shows that vision loss that is often associated with laser therapy can be reduced when the drug ranibizumab is used in combination with laser.
• For expectant mothers with type 1 diabetes, tight control of glucose that begins before conception lowers the risk of birth defects, miscarriage, and newborn death to a range that is close to that of the general population.
• Patients use genetically engineered human insulin in a variety of formulations, e.g., rapid-acting, intermediate acting, and long-acting insulin, to control their blood glucose. Insulin pumps are widely used.
• A major clinical trial, the Diabetes Control and Complications Trial (DCCT; http://diabetes.niddk.nih.gov/dm/pubs/control), showed that intensive glucose control dramatically delays or prevents the eye, nerve, and kidney complications of type 1 diabetes. A paradigm shift in the way type 1 diabetes is controlled was based on this finding. As researchers continued to follow study participants, they found that tight glucose control also reduces cardiovascular complications, such as heart attack and stroke.  This research has contributed to greatly improved health outcomes for patients.
• Patients can regularly monitor their blood glucose with precise, less painful methods, including a continuous glucose monitor (CGM).  Technology pairing a CGM with an insulin pump is also available and was found to help patients achieve better blood glucose control with fewer episodes of dangerously low blood glucose compared to standard insulin injection therapy.
• The widely used HbA1c test shows average blood glucose over the past 3 months. The HbA1c Standardization Program enabled the translation of tight blood glucose control into common practice.
• Scientists have identified a key gene region that contributes nearly half the increased risk of developing type 1 diabetes, and have also learned a great deal about the underlying biology of autoimmune diabetes. They have used this knowledge to develop accurate genetic and antibody tests to predict who is at high, moderate, and low risk for developing type 1 diabetes. This knowledge and recent advances in immunology have enabled researchers to design and conduct studies that seek to prevent type 1 diabetes and to preserve insulin production in newly diagnosed patients. This new understanding has prevented life-threatening complications in clinical trial participants at risk for developing diabetes.
• Scientists have identified nearly 50 genes or gene regions associated with type 1 diabetes. 
• Many people who received islet transplants for poorly controlled type 1 diabetes are free of the need for insulin administration a year later, and episodes of dangerously low blood glucose are greatly reduced for as long as 5 years after transplant. But, the function of transplanted islets is lost over time, and patients have side effects from immunosuppressive drugs.
• The SEARCH for Diabetes in Youth Study (www.searchfordiabetes.org/) provided the first national data on prevalence of diabetes in youth: 1 of every 523 youth had physician diagnosed diabetes in 2001 (this number included both type 1 and type 2 diabetes). SEARCH also found that about 15,000 youth are diagnosed with type 1 diabetes each year.

TOMORROW

• By finding the environmental factors (e.g., viruses, toxins, dietary factors) that trigger type 1 diabetes through the NIH’s TEDDY study (www.teddystudy.org), researchers will identify ways to safely prevent the autoimmune destruction of insulin-producing cells. 
• Approaches to prevent or slow progression of type 1 diabetes will be identified through research conducted by NIH’s Type 1 Diabetes TrialNet (www.diabetestrialnet.org).  TrialNet will also be poised to test new therapies emerging from research on environmental and genetic contributors to disease.    
• Research by the NIH’s Clinical Islet Transplantation Consortium (www.citisletstudy.org) will improve methods for islet transplantation, allowing more people to benefit from this treatment strategy. 
• Methods for safely imaging the insulin-producing beta cells will help scientists better understand the disease process and assess the benefits of treatments and preventions that are under study.
• Knowledge from the NIH’s Beta Cell Biology Consortium (www.betacell.org) about biological pathways regulating development and growth of insulin-producing beta cells will help scientists generate beta cells in the lab. This progress may relieve the shortage of beta cells for transplantation and lead to ways to promote beta cell regeneration in people with type 1 diabetes.
• New technologies, such as a closed loop system that automatically senses blood glucose and adjusts insulin dosage precisely, will become available—allowing patients to more easily control their blood glucose levels and develop fewer complications.
• As molecular pathways by which blood glucose causes cell injury are better understood, scientists will develop medicines to prevent and repair the damage.
• Tracking the number of children with diabetes through SEARCH will allow scientists to see how rates are changing over time and inform research and public health efforts to combat the disease.

For more information, contact The National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK):NIDDKinquiries@nih.gov

The National Institute of Diabetes and Digestive and Kidney Diseases www.niddk.nih.gov

I know

Ketones, insulin, DKA, novolog, lantus, Blood glucose, syringe, HA1C, doses, corrections, bolus, carbs, endocronologist, pumps, continuous glucose monitor, CDE or certified diabetic educator, glucagon, test strips, tester or poker, meter, autoantibodies, beta cells, islets, pancreas,C -peptide test, 504 plans, honeymoon period, islets of Langerhans, JDRF, ADA, logbooks, long-acting, fast-acting, lipohypertrophy, Medtronic minimed system, NPH, anion gap, ph level, T-cells, kits, injection sites and rotation, vials, insulin pens, highs, lows, goals, insta-glucose, etc... do you know what all these mean?  I've learned a lot in the last month.  I was so uninformed.  Even having a husband with type 2 diabetes didn't prepare me for all of this.   There definitely is a learning curve to type 1.  And I'm still learning.  Just finished reading The Everything Parent's Guide to Children with Juvenile Diabetes that a super good friend gave me.

It was extremely helpful and very informative!  It will be something I refer back to often.  My goal now is to stay educated and to help inform.  Most everyone knows about Type 2 and how it's managed.  Very few understand Type 1.  I was there; I was ignorant once.  I'll never be the one to say "You'll be fine once it's regulated." or "I hear it's a very controllable disease." or "At least it's not something worse." or "Aren't you supposed to avoid sugars and carbs?"  Food is carbs.  Half a small banana has 15g of carbs.  Depending on our ratio that's about 1 to 1.5 units of novolog insulin.  We look at fiber and carbs and fat and protein and work towards a balanced meal.  But at midnight that isn't necessarily the case.  Who knew that OJ would be medicine (it helps to raise blood sugars fast in a low)? Or something as simple as playing with friends would make me worry about lows?

One Month

Last month on the 28th at this time I'd already visited the ER once, spent the day (and the evening before) with a vomitting Sugar Bear, called the ER at 2:30 and 5:30 and 7:30 and 10:15.  He'd gotten more and more lethargic as the day went on and by evening he couldn't even walk and wasn't coherent.  By 10:30 we were at the ER again and by 11pm I was told my son has type 1 diabetes and that he was in DKA (diabetic ketoacidosis) and that we were being taken to the PICU.  I cried.  A month later and he is doing okay.  We're adjusting.  I still have flashbacks to the triage room with the numerous nurses and doctors poking and hooking up my child to wires and IVs.  His fingers were so chewed up from that experience; he has scars.  He was so out of it that he didn't cry or flinch or even seem to notice any of what the health care professionals were doing.  He doesn't remember and for that I 'm thankful.  He doesn't really remember the PICU room either.  Things I remember-- he tried to chew the red light monitor off his finger numerous times, in a daze he tried to get up and out of the bed to go who knows where, when he did talk during his incoherence he kept saying can I go home,  I couldn't and didn't sleep until we were moved to the regular part of the hospital, every hour they came in and had to draw or check blood sugars, the doc checking his brain responses when he was completely out of it and him telling me his brain had some swelling,  the wetting of the bed because he didn't wake at all, the first smile when I knew he'd come back, the utter exhaustion, the animal footprints on the PICU ceiling, the nice nurses, the way everyone kept me informed even if it seemed like they were speaking a foreign language, a friend bringing food,  the hugs from two beautiful friends, the outpouring of love from our friends and family online, the phone call from our friend in Michigan in the middle of the night, My Mom on the phone, the feeling of loneliness in a dark hospital room in the ICU, hearing the little girl on the floor near our room, the pamphlets that made me cry, and more.  A month.  Every moment precious.  Every day I've cried.

Trying to find the Balance

We went to friends Saturday night for dinner.  I drank wine and tried to relax.  It seemed to work for awhile but then Sugar Bear started to crash.  By the time we got home (late) he continued with low readings.  We tried juice, Cheetos, peanut butter and jelly sandwich, etc...  It took a call to the endo doc around 1am to get things under control.  I sobered up quickly and had a good cry.  Then yesterday things were going smoothly and he started to drop again (I was at work).  Then he rebounded even though the boys did everything right.  We had INsillion to carb ratios and nighttime lantus changed a couple days ago and we're still trying to dial it in.  What sucks is this is the new normal.  He could eat and do everything right and still drop or rise too much.  It's why we test at midnight and three am.  This morning at 3 he was at 114 for his BS.  I debated about testing before taking his brother to school at 7:30.  Instead I checked on him.  How was his breathing, did he stir at all when I kissed him, was he too pale, etc..?  When I got back at 8 he was awake and ready for breakfast and BS was 124.   But, he said he's snotty and had small ketones in his urine.  More vigilance.
I think the scariest moments for me so far (besides the hospital) have been the phone call at work that says his BS is 46 and there is absolutely nothing I can do to help.   Other moments are when Sugar Bear says "I feel shaky, I think we should test."  My stomach tightens and flips over.  My heart stops.

5 to 10 times a day

I'm tired.  More like exhausted.  When Sugar Bear was firstborn he slept easily through the night.  It was such a blessing as his older brother had been a colicky baby.  I was also a SAHM back then.  With my first I took the sage advice of sleeping when the baby sleeps.  I didn't have to do that with Sugar Bear.  I also couldn't since I had a four year old as well.  Now, now I'm lucky when I get three hours in a row and the guilt that happens if I sleep through a 3 am check!  We test at 10pm, midnight and 3 am minimum.  During the day we check his BS before breakfast, before lunch,  and before dinner.  That's all as long as no lows or highs in which case we test more.  5 to 10 times a day we have to poke a finger, squeeze his precious blood out, and make sure he's not in a "danger" zone.

I'm at work 8 1/2 hours a day 5 days a week with only a half hour break for lunch on those days.  I get up with my oldest by 6am so I can drop him off at school before 8 and get back home to check Sugar Bear's BS and give him a quick breakfast so hubby can give him his INsillion on time.  I get home from work between 6 and 6:30 (depending on whether I had to grab groceries or meds on the way home) and then it's dinner, laundry, dishes, snack, bedtime.  This disease has taken time away-time of relaxation, time to just be, time to not worry or think, time to dream.

Big bro testing Sugar Bear's BS

 Today has been especially rough as we ran out of testing strips.  Due to pharmacy and insurance and doctors we had to jump through hoops all while stressing because we don't have 50 bucks to buy them.  We got some by 8.  But we found out in the process that hubby's testing strips (he's type 2) aren't covered by his insurance!  More hoops, more stress, more time.  I'm also filing FMLA  for the time spent off work while Sugar Bear was in the hospital.  On top of it all I got called to my boss's office.  Let's just say more stress because of all this.

  I'm exhausted.  Time to go check the BS meter again and see if I can sleep for an hour or not.  He was low and we've given him two snacks and juice just to get to a level where we can go to bed.

New Normal

Friday December 27th, 2013, my husband took our 8 year old son to the pediatrician because my son had what I thought was strep throat. We got a prescription for amoxicillin they did the culture not the rapid strep test and when I came home from work and started amoxicillin he started throwing up. I took him to the ER early Saturday morning. They did a rapid strep test which was negative and a culture and decided that he had a stomach bug. They gave him Zofran at the hospital and it seemed to stop the vomiting. We went home and he seemed a little bit better. We gave him his next dose of Zofran in the afternoon and he threw it up immediately. We called the ER to see if we needed to give more they said no. He continued vomiting every hour after that. We called the ER again around dinnertime. They recommended we wait until his next dose at 8:30 to see how he did. We gave the dose at 8:30 and he only threw up once at 9:30. It seemed like it helped. At 10:30 or so he started this rapid breathing. I immediately was going to take him to the ER. My husband called the ER. They said to wait 10 minutes and see if it settled down. I didn't wait I took him in immediately. When we got to the ER they took him back right away. They started doing all kinds of tests and within 15 minutes they told me that he was diabetic and in something called diabetic ketoacidosis. We got moved to the ICU. We spent Saturday night and all day Sunday and Sunday night in the ICU. Monday evening we were moved to a regular room on the diabetes wing. We spent New Year's Eve in the hospital as he still was spilling ketones.  we got to go home New Year's Day.  He was diagnosed 25 days ago.  Since then we've dealt with highs where we needed him to drink more water and exercise or like last night take more insulin.  We've dealt with lows where he needed to eat immediately (even at 3 am).  We test at 10, midnight, and 3am.  We constantly check in to see how he's feeling.  Is the irritability because of glucose levels or because he's upset with his brother.  He's apologized for having diabetes.  We've compared his insulin (INsillion) to Iron Man's arc reactor.  We've read books.  He travels with his life saving kit and my heart is broken.  For his birthday on the 17th he got to have cake.  I hate cake now.  It is evil.  It messes up glucose for a long time!  And I'm a cake decorator for my profession.  My friends and family have been pretty supportive.  There are coworkers that don't understand and so many people think type 2 and type 1 are the same.  Type 1 is a completely different beast that scares me.  My husband has type 2.  Sugar Bear calls the blood glucose readings we have to take 6 to 10 times or more a day BS.  I agree.  This is BS.  No child should have to go through this.  No family should have to figure out a "new normal" of needles and life and death decisions daily.  I want a cure.  Insulin (INsillion) is not a cure.