Tuesday, December 3, 2013

. I can't believe we have been on this gastro journey for over 3 years now. In January Sammie will have Type 1 Diabetes for 9 years. IF you new to the "King Family Blog" here is Sammie's Story

Sammie's Story.

 She was a 3rd grader on 1/2/2005 when diagnosed with Type 1 Diabetes. I tried to give Sammie a normal life. She handled it much better than I did. I was so afraid to sleep. What if I made a mistake dosing insulin?? Her blood sugar numbers were crazy. December 2008 Sammie was not letting diabetes slow her down. She was now a 7th grader and loved playing basketball and volleyball. After playing in a basketball game Sammie said words that I will never forget, “Mom, I can’t feel my feet”. Several weeks later she was diagnosed with Peripheral Neuropathy. The diagnosis of neuropathy typically doesn’t happen until after years with diabetes. Sammie has never had an A1C above 9 except for initial diagnosis. Doctors told us that if would continue to maintain tight control that complications would not continue. The next 2 years Sammie had A1C’s in the high 6’s and low 7’s. June 2010 Sammie was diagnosed with Hashimoto’s Thyroid and Autonomic Neuropathy. Sammie was still playing basketball and volleyball. She was dreaming of playing volleyball in college. August 2010, while on vacation in Myrtle Beach South Carolina Sammie started vomiting. October 2010 we received a devastating diagnosis. Gastroparesis which means paralyzed stomach. Sammie’s stomach does not empty normally. She has constant and severe nausea and vomiting. She has to rely on a feeding tube to get life sustaining nutrition. . 8 years after diagnosis Sammie has lost all sensation in her limbs. She no longer is able to play the sports she loves and has not been able to attend high school since her freshman year. (She is a senior now) She has had 2 gastric pacemakers and both have not given much relief. She no longer has vein access in her arms due to 3 years of battling dehydration so she has a permanent mediport.  We have spent hundreds of miles trying to find medical help, from Columbus Ohio, next Nashville Tn. and now Louisville Ky. Our doctors in Louisville believe her immune system is on over drive and is attacking her body. So now she spends Fridays in the hospital for 6 hours getting IVIG treatments hoping that it will help combat symptoms and slow down her auto immune system.  IVIG caused meningitis which was pretty scary. It has not helped our nausea and vomiting but has helped the pain of peripheral neuropathy. I will be posting soon about two new medications that Sammie will be trying to help her gastroparesis.
Love and Prayers,
Mom 2 a T1D Puke Princess

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