Sammie had her first gastric pacemakerr placed February 2, 2011. It worked well at first and then just stopped working. Our doctors tried adjusting the pacer setting but nothing seemed to work. April 2012 we were sent to Vanderbilt Medical Center in Nashville Tennessee. We stayed with the doctor at VMC until November 2012, when he was not able to help Sammie he sent us to Jewish Hospital in Louisville Ky. A new pacer was implanted on January 22, 2013. This new pacer only relieved symptoms for 2 short months.
Today I thought I would share medications we have tried
Zofran - did not help
Phenergan -  helps quite a bit but can't function during the day because of the sleepiness side effect takes every night
Reglan - worked a bit but caused lactation
Erythromycin - did not help
Imipramine - did not help
Domperidone did not help and caused lactation. This medication is not FDA approved. We received this medication through a clinical trial through NCH
Emend- did not help
Kytril through IV- helped a bit
Sancuso - is patch form of Kytril and did not help
Compazine - worked but caused excessive urination
Meclizine - did not work
Scopolamine - worked great but caused temporary blindness
Marinol - did not help vomiting or nausea but increased appetite
New
Diclegis -helped nausea but not vomiting, side effect was VERY sleepy. Can not take and function during day
Zuplenz - worked great at first but lost it's effect the longer she was on it. It is a form of Zofran. It is a film that dissolves on tongue.

Remember I am not a doctor simply just a mom. Consult with your doctor.
I hope this medicine list helps :)
Love and Prayers

. 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
                                                                                                                                     

http://gallery.me.com/helanaamy/100023 This video is of Sammie at the JDRF Walk to Cure Kick Off Luncheon.

So Very Proud

    My family has been through so much the past year, sometimes it is hard not to wonder what God's plan is for us. Today I saw God's plan in action. Sammie spoke to a group of corporate JDRF sponsers. She told them her diabetes, gastroparesis story and I do not think there was a dry eye in the room. Her strength amazes me. She did a wonderful job and Randy and I are so very proud. I know my mom would have been so proud of her today.

Sammie's 2011 JDRF Walk to Cure Diabetes Video

DAY OF HOPE

Hope is faith holding out its hand in the dark. ”
~George Iles

Today is "A Day of Hope".  People all over the world are writing this one word on their hands.  In honor of someone special.

It's one word.  One small, four letter word.

But it's BIG in meaning and purpose.

Hope is everything.

You might wonder.... WHY would I want to write this word on my hand?  What good is that going to do?

Maybe someone sees it and it brightens their day.

Maybe someone asks you about it and you can talk about life with Type 1.

Maybe it encourages someone to ACT.

Maybe it helps someone to keep holding on... to keep swimming... to never give up.

Maybe it helps YOU smile when you see it.

Maybe it reminds YOU to keep swimming.

Maybe it makes you feel proud and determined...

There is power in this word.

There is power in people all over the world BELIEVING in HOPE.

“Hope is not a dream but a way of making dreams become reality.”
~Unknown

Of course, it's not too late!  Go ahead and write it on your hand tomorrow.  You can have HOPE any day.  You SHOULD have HOPE every day!

Final Post

   I have learned so much during this gastro journey. I know things like, even though Sammie's  A1C has
been 7.1 - 7.4 for almost 4 years terrible complications can still happen. I know things like , when your stomach does not empty properly your intestines do not empty properly. I know what a motility catheter is and what it does. I have also learned that the line between overwhelming sadness and overwhelming happiness is an invisible line. 
   As Randy, Sammie and I will leave Nationwide Children's Hospital, I  have overwhelming happiness because Sammie will be coming home with a permanent gastric pacemaker. Coming home also brings me overwhelming sadness because I will be saying good -bye to my beloved mother.
  I have so many people to thank whom without there love and support this gastro journey would have been nearly impossible. First, I want to thank my mother, she is the one who taught me to always, no matter what be your child's advocate.  I want to thank my brothers and sisters who filled in for me so I would leave our precious mother.  I want to thank my United Baptist Church family, your support has meant everything to me. My mother's family in Wisconsin (Anna and Sarah and Linda) always kept my family in their prayers, .I want to thank my Aunt Phyllis and Uncle Frank, and my Salyers cousins who always had us in their thoughts and prayers. I really could not have made it through this journey without my daughter Cassie, she had to be Little Randy's mommy while I was away. Big Randy for loving me and listening to me. I want to thank Sammie, your life has not been smooth sailing. The waves have been rough, but God has always held on to our ship. I will continue to be your advocate, I will continue to fight for awareness and I will always fight for a CURE.  Please never forget your grandmother loved you and was very proud of you.