Yankee Belle


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.************



A Mom to Two Lil' Ones said...

Wonderfully written letter.

I can't even begin to imagine the constant stress and worry that you feel - he is so blessed to have someone fight on his behalf. You are an amazing strong woman and mommy to that sweet little boy.