FB Post 4/9/19

Dear friends, old and new, if you have known me longer than 4 years… you know I have been searching for answers about my son and his strange collection of heath problems that he has had since birth. I have taken him to numerous doctors all over Texas, blogged about it, cried to many of you about it, posted on fb about it… and then eventually just stopped talking about it because we never could find answers. I have been accused by doctors, daycares, teachers, friends, some family and coworkers of old jobs, that I am “making it up”, have Munchausens, that my anxiety is making him sick, am crazy, I spoil him, he needs a good spanking… you name it I’ve heard it. Well, Owen is sick again. Really sick. He’s lost 47 pounds since September. He has many many other symptoms that I’m not allowed to share on fb (hes 15 now and I respect his wish for privacy). But his main symptom is weight loss, muscle breakdown and weakness, and stomach pain. I was so worried about him that after 4 years of “no more doctors” I broke my promise to owen and made an appointment with Texas Tech Pediatric.After a few tests, xrays, a stomach emptying study and blood tests… we returned today for results. And if you know ANY of our story, you will know that I was not expecting results!!!Well…..After 15 years of worrying, crying, praying, dragging him from dr to dr to doctor… we got not one… but FOUR answers that lead to a SO NEW ITS NOT EVEN NAMED syndrome. It’s super similar to Ehlers-Danlos Hyper-mobility syndrome… but he also has Autonomic Nervous System Disorder that is attacking his organs and muscles… and a type of connective tissue Disorder. The other is Lateral something (I heard so many words today I can’t even remember.)So, why ami telling you all this? So I can sleep tonight…. Because I am overwhelmed and need to see it all typed out in order to try to make it real to me. I still feel like I am in a dream…. and not a great one. Yes! It’s good to finally have some answers after all this time. Yes! I wish we could have found it sooner. No, owen is not feeling better… we start a new medication tomorrow but if he looses any more weight the dr may want to admit him to the hospital. It’s been a long road getting here, but at least we have some road signs for the rest of our journey. I will be blogging about it soon in greater detail, if you are interested I can message you the link later. i can’t believe it’s been 15 years of mystery just to be solved with a simple X-ray that shows a small space in his neck!!!! thank GOD! I can deal with that. Goodnight