Open Letter to the FDA

This letter was actually sent to be presented to the FDA in support of the artificial pancreas. I encourage all type 1 diabetics to write as well. However, some names and information have been changed for privacy on my blog.

Dear FDA,

My son, lil CJ, was diagnosed on April 26, 2011, two days after his 2nd birthday with type 1 diabetes. His blood sugar was 540, a far cry from the normal 100.

Type 1 diabetes does not run in either my husband’s or my family. My son was fortunate that I sensed something was wrong. Many children go undiagnosed and die an untimely and unnecessary death.

Since April, my 2 year old toddler endures as many as 10 daily finger blood pricks. This is slightly above the norm because lil CJ is still too young to communicate his symptoms. Some finger checks reveal a normal blood sugar suggesting his actions are typical behavior for a toddler in the “terrible two’s” phase. Other times, his blood sugar reveals a very serious condition that requires immediate attention.

Low blood sugars are the most dangerous for lil CJ at his age. As a parent, I am unable to visually differentiate a low blood sugar. What might come across as a sleepy toddler in need of a nap, could actually be a low blood sugar masking itself with lethargy and fussiness. Before diabetes, I would simply lay my son down for a nap and close the door where he would sleep in excess of 2 hours. Now, not only does he require a finger prick, but also a quick prayer that his blood sugar does not drop low while he sleeps. My son grew out of the SIDS infancy fear only to be affected by a life debilitating disease that can cause ‘Dead-In-Bed’ syndrome. Our most terrifying low to date registered at 39 on his blood glucose meter.

High blood sugar is also a danger. When lil CJ is high, which could be due to any number of reasons; a growth spurt, inaccurate carbohydrate counting at a meal, insufficient insulin administered post meal, etcetera, his sleep becomes erratic. Developmentally required sleep is disrupted and causes him to toss and turn restlessly. In addition to his nightly 2 am blood sugar check, there are occasions when my husband or I must administer a correction of insulin to bring him down within normal range. Once this is done, we do a post 2 hour finger blood check to ensure the dosage was correct and that he does not drop too low while sleeping. It truly becomes a vicious cycle, as if our child is an experiment.

Like all 2 year olds, lil CJ does not always want to cooperate. Convincing him to eat his precisely measured 15 carbohydrate snack to avoid a low blood sugar sometimes becomes a battle of wits. The only problem with his lack of cooperation is that his resistance could result in death.

I once carried a diaper bag that could be left in the car and retrieved when necessary. I now carry my son’s life survival bag. lil CJ does not leave home without his medical ID bracelet, 2 different insulins, syringes, a 15 carbohydrate snack, a glucagon syringe, and fast acting sugar items to treat a low blood sugar.

Sadly, these are only some of the issues my son and family face daily with diabetes. We have not yet encountered any infections, severe colds or viruses, flu season, school, playing sports, and puberty. Baby sitters are scarce because of the intricacies and intensiveness of diabetes. We are left to pray and hope for a cure.

What my son and other type 1 diabetics need is the artificial pancreas; their daily struggles demand the need for tighter management over glucose levels. Life is such a precious gift and to know that there are innovative tools and technologies available just not in our great nation is frustrating to say the least.

Please push forward with the artificial pancreas and its approval. We need this now. lil CJ's life depends on it

Yours in faith,

Yankee Belle

*******Insulin is NOT a cure.************

Big Girl B & lil CJ's Wish

1st day of Kindergarten and oh so proud.

1st day of cheerleading. Go Rockets!



And lil CJ just dying to play on the field. 'Me play football, Mama! Me play!"


Way too many firsts this year. Mommy needs a pause button.

lil CJ Meets Congresswoman Terri Sewell

"On Thursday, June 29, 2011, Alabama JDRF advocates, Board Members, Junior Board Members, and Executive Director met with Congresswoman Terri Sewell in her Birmingham office. The Congresswoman warmly greeted former Children's Congress Delegate Noah Fields and newly diagnosed two year Caden James Mitchell. Kathy During began the meeting by thanking Congresswoman Sewell for her support of the Guidance Letter to the FDA on the Artificial Pancreas. Kathy discussed the benefits someone living with diabetes could expect using the closed loop system to control extreme highs and lows. The startling statistic Alabama's diabetes epidemic and the staggering cost of diabetes to the state were shared with Congresswoman Sewell. The Congresswoman expressed her concerns and shared her own personal stories of family members who live with diabetes. Congresswoman Sewell acknowledged that "...we didn't have to sell her on the cause. She was going to be a big supporter of diabetes" Representative Sewell acknowledged the importance of technology in better diabetes management, which in turn would curtail complications and extended health care costs. Meeting attendees shared how diabetes have impacted their lives. The Congresswoman was able to see the spectrum of type 1 diabetes and how it shows no boundaries across ages. Congresswoman Sewell said she would look in to joining the Diabetes Caucus and we could count on her for support. Those in attendance were: Aubrey Miller Executive Director JDRF, Philip McDonald, Patrick Bodden Past President Junior Board, Tim Ritchie, Stacy and Caden James Mitchell, Noah Fields (past Childrens Congress), Georgiana and Karla Fields, Rob and Susan Dickinson, Holman Head , and Kathy During. Alabama ATC."
~Kathy During

http://jdrfpromise.org/meeting-summaries/17541

lil CJ Meets Congressman Bachus

"On Thursday, August 18th, Alabama’s District 6 advocates were warmly received by Congressman Spencer Bachus in his Birmingham office. Our group began the meeting thanking Congressman Bachus for his ongoing support of funding and research to a cure for diabetes. We shared our gratitude for his signing the letter of guidance to the FDA in support of the Artificial Pancreas. Congressman Bachus commented on the evolution of the APP’s components and is proud of his support of JDRF research and funding that has elevated the APP to outpatient availability. Congressman Bachus agreed to prepare comments encouraging outpatient trials for APP. Each of the participants shared their personal story of living with type 1 diabetes and the challenges of facing the disease. Christopher Bailey talked about how being diagnosed as a teenager, he was able to research his disease and has become a spokesman for diabetes. Congressman Bachus applauded Christopher's, and his mother, Suzanne’s, efforts. Stacy Mitchell, mother to two year old Caden James, shared the struggles of caring for a child that young. The ten times a day finger sticks, the carb counting and constant monitoring of his diet, and the diaper bag that has now morphed into a medical bag. Congressman Bachus was visibly touched by Caden James’ story. Caden James was joined at the meeting by his sister, Brooke. The Mitchell's presented the Congressman with a precious trivet the had made with Caden James' picture and the JDRF logo. Cameron Crouse, a veteran of Promise meetings with the congressman, talked about staring middle school and playing tackle football. When Congressman Bachus expressed his concern about football, Cameron reminded the Congressman he could do anything. Cameron was joined by his brother, Charlie, his sister, Gretchen, and his mom, Michelle. Another veteran advocate, Serene Johnson, shared a very scary story about a diabetic low her adult daughter had recently had. She expressed the hopes she has in how the Artificial Pancreas could help prevent these episodes for her daughter and all diabetics by better regulating her blood sugars and insulin delivery. Our group was joined by the Alabama JDRF Chapter’s Development Manager, Sara Hood, and Executive Director, Aubrey Miller, who is also the father of an adult daughter living with type 1. In closing, we thanked the Congressman for his support of our funding, research, and treatments to a cure and expressed our gratitude for his ongoing support of the JDRF and our families."

~Michelle Warner Crouse

http://jdrfpromise.org/meeting-summaries/1754

Testing Testing

After congratulating myself on keeping my blog up,I quickly slacked off on posting. (Oh the ironies of life.)

I have so much to blog, our 1st Children With Diabetes - Friends For Life Conference this past July, Big B starting kindergarten, lil CJ and his diabetes "Me have diabetes!" and all the crazy decisions we have to now make, Big B's 1st loose tooth, our meetings with Congresswoman Sewell & Congressman Bachus, our upcoming JDRF walk, my involvement with Birmingham's 1st support/networking group via the JDRF, Big B's cheer leading - Go Rockets!, my new addiction to Pinerest and oh so much more.

I need more hours in the day along with more of me to accomplish it all.