Be faithful...be strong...you are in my prayers!!
You are a brave young girl. I could never imagine being in your condition. They are always making medical advancements, You and your family are in my prayers.
Dear Gentrie: I am the mother of a wonderful 14 year old boy, who has been suffering since last Sept. from gastroparesis. He had a mild case of the swine flu and after that he never recovered. He got so depressed that attempted to end his life 3 times since. By far this is the hardest thing our family has ever gone through. He has always been a happy , popular, active. Then all of the sudden has this severe stomach pains, does not want to eat, because fo the pain. We took him to many rgreat hospitals to see THE BEST in the area. No REAL results yet. He is in Erythromicyn 4 times a day, and some antiacid, but, this has led to a severe depression, he missed all of his school year last year. He was lucky enough that just with private tuttoring he took allhis test and pass his grade without much instrction. Now he has als been diagnosed with P.O.T.S. (post orthostatic tachycardiac disorder), This also agraavates his whole person, since his heart rate has been running about 119-170 per minute all the time, and this tires him terrible. Our cardiologyst has been able to lower his heart rate , so he is feeling better and is under the care of some super psychiatry care team.He was intubated with an overdoses and many struggles. All I want to do is to tell you that you gave me some hope, that he is not alone, I would like to know if it is OK with you. What hospital did you visited, and who was the doctor that diagnoses your disease. That would help me to do some research. Good luck and God's Blessings. I am sorry I cannot help you with monetary donations, as I am disable and , since our son's illness, you know how things accumulate quick. I however, promised to pray for you. Keep smiling you and your family look soooo happy together. FAMILY and HAPPINESS is half of the battle. You and my son are luccky to have GOD, FAMILY,LOVE and FAITH. Keep on keeping on.!.BLessings.
Get well kiddo. My son had stomach issues that were misdiagnosed as an eating disorder until we found out he actually had a bacteria called H Pylori. Take care of yourself and know others wish you a speedy recovery.
Thank you for sharing your story with the media. It was heartbreaking to read, to be sure, but it was also an inspiration and a support to those like me struggling with undiagnosed gastro problems. Its truly staggering how often I hear about gastro issues just within those people that I know around me, which only leads me to believe its widespread throughout the country and world.
At 26, I have already struggled 10 years with digesting food. Paralyzed by pain and overwhelmed with frustration, I am handed off with pain meds and passed over for "more interesting" cases. I am told I am "high strung" and stressed and eat poorly. But with every hoop of their's I jump through to try and make myself better, I am only left to find I still have a problem. I know the feeling of being excited for a diagnosis, even if it means altering your entire life, and I envy that of you - as sad of a situation it is, its a success to finally be validated with that name of the causing disease.
Congrats to the victory of finding the problem and finding a solution. Your strength and determination will resonate with me with every day I experience the symptoms of my own! Good luck to you and I hope your future is happy and bright. You deserve the best!
My daughter was dx @ 15 yrs old w/same. We also went through same questions regarding eating disorders/stress. I am a medical worker and knew that this was not the case. She was hungry but began to throw up during the night. After a hospitalization- we finallly got the dx. The Gastro's fix was erthromycin 20 mins before each meal ,as it has a motility agent built in. This was supposed to stimulate the stomach to empty it's content. That worked somewhat. However, when I began to think about the condition I realized that the Vagus nerve wasn't stimulating the stomach to digest the food. I took her to an acupuncturist at first once a week. After a few weeks we went 2x/week. After three weeks she was cured. The Acupuncture was my idea as I really thought hard as to how to stimulate
the Vagus nerve and this worked! My daughter also missed her 9th grade year at her new school which was heartbreaking. I believe that this is a condition brought on as a by-product of some sort of medicine. Everyone now has free/or $4 dollar antibiotics and I am wondering if the base material is not the answer as to why all the kids are getting this disease. I hope this helps another family with this heartbreaking disease.
Dear Gentrie and family
My beautiful 17 year old daughter has also been diagonosed with gastroparesis this Feb. Reading your story and reading your blog makes me cry as Ellie has suffered the symptoms, missed a portion on her Junior year in high school and missed out on her favorite team sports. We leave outside Philly so we see a specialist at Jefferson Hospital. Dr. Sidney Cohen. She has had two Botox injections and is now taking domperidone. I am visiting my mom who is not well but I want Ellie to write to you!! She feels so alone at times. We are so proud of her as she too as you are is an amazing young woman!! I am so sorry you have had to endure this but thank you for getting this illness brought to the attention of so many. Best wishes, Margaret Smith
I just got a call from my sister, Linda, telling me about your story on the Today Show. She was crying as she spoke...bitter sweet tears...she told me that for the first time in 19 years she knows her disease is real. Hearing your story was like listening to her own struggle with this disease. She told me she sat down and cried because she now at last she didn't feel alone....many times she had doubted her doctors' diagnosis, because her disease was so rare. My sister, Linda, has had gastroperesis for the past 19 years. She suffers greatly and continues to struggle with this terrible disease. But today your story became a gift for my sister...I heard the joy in her tears...thank you for giving her that.
Hi Gentrie, my five month old (yes 5 months old) granddaughter Olivia was diagnosised with gastroparesis last month here in Albuquerque. We have been praying to find someone else who has been diagnosed with this condition. It is very rare, even rarer in infants. Can you or your parents please email me names of doctors hospitals, etc... I will pray for you. You have been a blessing from God talking about your story. Thank you for being such a strong young lady. Virginia
I just read your story on the Today's Show online, You are a brave young woman. Keep up the positive attitude.