Thursday, October 21, 2010

Results Without Answers

I have sat down to write this post several times, yet I keep finding myself unable to put my thoughts together. My thoughts and feelings are scattered like dandelion seeds on the wind.

Last month our daughter had a frightening episode of hypoglycemia (low blood sugar). You can read about it here.  In the back of every Type 1 parent's mind lurks the fear that your non-diabetic children will develop Type 1. When your child is first diagnosed there is a certain amount naivety, you just don't know all the intricacies of having Type1. You don't know how much work it is. You don't know how scary it can be. You don't realize the impact it will have. I felt like the realizations came along the same time as my resolve and strength when T was diagnosed. Facing a possible second diagnoses, that naivety is gone. You know how bad it can really suck. You know the fear, the anxiety. You know the impact it has on your child, you can see into the future and imagine what the lows will look like, how the highs will feel, because you have seen it before.

We had L admitted to UCSF for further testing. She fasted for 22 hours in an attempt to create a low blood sugar. She was amazing and never complained, never cried. The staff fell in love with her. They were so impressed with how she handled everything. She watched as they put the IV in and made jokes about her blood. She rocks. Parenting her is such a gift.

She never did have a low blood sugar, we were relieved that her body seem to do exactly what it was supposed to, but worried to have not found definitive answers. Before discharge we weighed the options. There are some blood tests that can help determine your risk of developing Type 1 diabetes. They measure the amount of autobodies in your blood. There are four different autobodies that can be tested. The tests are not perfect and there are only a few labs in the US that perform the tests. L and our other son C are both enrolled in a clinical trial called TrialNet that tests their blood every year until they are 18 to test for these autobodies. Both kids were tested in March of 2010 and the results were negative for autobodies. Indicating that their risk for developing type 1 was very low. That can change at anytime.  Researchers are using the study to try to determine how and why people develop autobodies and if they do, if it is possible to delay the onset of Type 1.

We decided to run these autobodies tests again on L. The blood was sent to a lab that is different than the TrialNet lab. We had no idea it would take weeks to get results. L has not had any low blood sugars since her hospitalization. We only test her blood sugars if she seems symptomatic for highs or lows or if she asks. We have seen some numbers in the 190's that have created concern. (normal is 70-140) Last Friday L and C 's school had their annual huge fundraiser, a Walk-a-thon that they entire school participates in. C and L both walked 10 miles to support the school. It was half way through when I got an email from L's Dr. with the results. Two out of the four of her autobodies were elevated.

The normal GAD value range is 1.0 or less. L's was 1.8.
The normal ICN value range is .8 or less. L's was .9

Dr. G went on to explain that although her values were elevated, he was not comfortable calling them positive. He explained that this lab is not as sensitive or advanced in technology as the TrialNet lab and that the results are not as precise. He felt that her values were not "off" enough to say that she she is definitely positive. He also said he was concerned to see that they were elevated in combination with the higher blood sugar values. His advice was to continue careful monitoring, testing her blood sugar when she seemed symptomatic, and randomly 2 hours post meal and fasting every week or so and keep track of the numbers for trends. If we start seeing numbers in the 190+ range longer than two hours after meals or higher fasting numbers then we will reevaluate. We will retest through TrialNet in March or sooner if necessary.

I feel like I was prepared for a positive or a negative result. I am grateful it wasn't positive, but I really had hoped for a negative result. This in-between isn't what I expected. My emotions run the gamete ranging from grateful and hopeful, to angry and heartbroke. I can't get the look on T's face out of my head when we told him the results.

Here we are with results without answers. Next time I find a dandelion and blow on the seeds, I think you all know what I will be wishing for.


  1. April. You contantly amaze me with your stength and prose. Even in times of despair, you are so thoughtful and elegant in your words. It was so nice to give you an actual hug the other day and to see our sweet little horse girls (and boys) playing together. Sending you strength to endure this leg of your journey. I hope to see you soon. xo my friend, Annika

  2. So frustrating! As parents we just want to protect our kids. It is hard to protect against the unknown. :( Your wonderful family will get through this time. Love you!


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