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Posts (8)

Sep 28, 2018 · Booked Mayo for My Son - Now Frightened in Just Want to Talk

Hi Ginger. The person who seems to be trying to get us in on the booked date is the “Patient Appointment Coordinator” in the International Appointment Office. I think she is trying. I am not sure how long to keep trying for before we just move it. I would prefer to leave it on October 29, but dont want to leave it too long in case we end up too far into November – I am already going to be possibly battling winter highways as it is – It snowed here today where i live. Boo Thanks for the ideas – maybe I will check with the Coordinator to see if she knows the “chances” of a cancellation and just leave it where it is.

Sep 28, 2018 · Booked Mayo for My Son - Now Frightened in Just Want to Talk

So…. little disappointed. We had originally booked for October 29, but now I find out that we may have to move it because Mayo doesnt have an appointment with gastro for him on that day. It is a 10+ hour drive for us to go there, so we need to have all appointments possible in the same week. This is so frustrating.
I already booked holidays from work and the hotel, my son has notified his employer (he has to take time off without pay). Ug.

Sep 25, 2018 · Booked Mayo for My Son - Now Frightened in Just Want to Talk

Suzmay – I am happy that you and your daughter were able to find the cause of her illness. I pray for her full recovery. Thank you for your prayers.
I am curious about how they (doctors) figured out that her illness was a reaction to a vaccine

Sep 25, 2018 · Booked Mayo for My Son - Now Frightened in Just Want to Talk

Peabody88 – your post is thoughtful, insightful, and evokes a wisdom far beyond your age. Thank you for reminding me what is truly important. I promised my son a long time ago that i would NEVER stop fighting for him, that we wont stop until we have answers. I need to change my mindset around Mayo – maybe it IS the end of the road because we will have some answers. But if they dont (have answers), it is STILL not the end of the road. I promised I wont stop, and I wont.
I know it seems that I might be putting too much stock into a “diagnosis” – I know that a diagnosis is only our first step. Once we know what it is, I hope that that knowledge leads us to a treatment or at least management of the illness and symptoms. Right now, we have no real way to manage it – no foods, amount of sleep, medications seem to make it worse or make it better. Some days are better than others for him, but we have no correlating behaviour to work with. So frustrating.
Thank you again for your words. I am not sure what you do for a living, but I am hoping/thinking it is in some sort of field where you help people. It is your calling. I will return to your words in dark days. Thank you from the bottom of my heart.

Sep 25, 2018 · Booked Mayo for My Son - Now Frightened in Just Want to Talk

Hi Teressa – my son’s first appointment is October 29. Thank you for your prayers. 🙂

Sep 24, 2018 · Booked Mayo for My Son - Now Frightened in Just Want to Talk

Thank you, Ginger. I am doing my best and praying hard that Mayo will be able to help my son. It is just so hard when we have been so hopeful so many times – we think we found it, only to find out we didnt. Over and over and over. My son has lost hope. I am still hanging on, but secretly am scared. As I said to Colleen; they just HAVE to find the problem. We have nowhere else to turn. 🙂

Sep 24, 2018 · Booked Mayo for My Son - Now Frightened in Just Want to Talk

Thank you, Colleen. My son has been scheduled to “Internal Medicine” but no further info from there. From what I understand, he will be assessed by a physician there, then tests and other doctors are scheduled based on that assessment. I have to put $7000 USD down before we even arrive (almost $10K CAD). The tests and procedures my son has had here in Canada are all gastroenterology-related: 3 gastroscopies/endoscopes, barium swallow, ultrasound, 24 hr ph study, impedance test, gallbladder and liver study (HIDA scan), manometry test, MRI of pancreas and midsection, 12 biopsies of stomach, polypectomy (stomach), H Pylori test, test for celiac, numerous blood tests, we have tried low fodmap diet, gluten free diet, … i may be forgetting some. All basically gastro. I am beginning to think this is not gastro-related as i dont think there are any more tests that could be done. He is nauseated 24-7 (no nausea medications work), he does have a very weak esophageal sphincter but no acid reflux symptoms, is very slender and lost an additional 30 lbs since this started, has low stress tolerance (and once had very high tolerance – he was a competitive athlete), trouble sleeping, back pain, muscle cramping (not severe)…. Nausea is the #1 concern. Thanks everyone for listening. Im just scared that Mayo Clinic – the best medical care in the world – wont be able to help him either. Yes – I am trying to think positive but am so scared. They HAVE to find out what this is. They just HAVE to.

Sep 23, 2018 · Booked Mayo for My Son - Now Frightened in Just Want to Talk

Hello, everyone. My son has been suffering from an unknown illness for over 3 years. He is now 20. After giving our Canadian health care system 3 years to try to find out what is wrong with him, we give up.
Now that Mayo has been booked, I am finding myself afraid. I am afraid that we wil go there, spend an enormous amount of money (I am a single mom whose income taxes pay a great deal to the healthcare system in Canada already – it is not “free”), get our hopes up once again, and the doctors there will not be able to find a cause either. Mayo has always been in our minds as the “last resort”; the “end of the road” – this is it. What if they dont find what’s wrong either? My son has been let down so many times, hoping we finally found the cause of his troubles. He has expressed that he does not and will not live the rest of his life “like this” – I am so scared and am praying to God every day that the specialists there can help him. Thanks for hearing me out.