Booked Mayo for My Son - Now Frightened

Posted by devsmaj @devsmaj, Sep 23, 2018

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.

Hi @devsmaj
I can imagine your apprehension. It's a big trip and an emotional not to mention financial investment. Can you tell me a bit more about your son, his symptoms and which specialists or tests he's been scheduled with at Mayo Clinic. Then I can connect you with other people who may have experience at Mayo Clinic in these areas to share with you. Please only share as much as you're comfortable with sharing.

Have you seen the discussions in the group Visiting Mayo Clinic? They may be helpful as you prepare for your visit: https://connect.mayoclinic.org/group/traveling-to-mayo-clinic-minnesota/
Which Mayo Clinic will you be going to: Rochester, Jacksonville or Phoenix?

REPLY

@devsmaj Yes, any big step can cause such apprehension. And this certainly is a big step. That said, perhaps you can look at it from the other side of the coin. You have attempted all your other resources, and have the Mayo Clinic as "a last resort". If you do not take advantage of it, you will have lost. If you do take advantage of it, and testing reveals the problem, then you are on your way to a resolution, and that is a win.

Please let us know how everything goes for you and your son; we care.
Ginger

REPLY
@colleenyoung

Hi @devsmaj
I can imagine your apprehension. It's a big trip and an emotional not to mention financial investment. Can you tell me a bit more about your son, his symptoms and which specialists or tests he's been scheduled with at Mayo Clinic. Then I can connect you with other people who may have experience at Mayo Clinic in these areas to share with you. Please only share as much as you're comfortable with sharing.

Have you seen the discussions in the group Visiting Mayo Clinic? They may be helpful as you prepare for your visit: https://connect.mayoclinic.org/group/traveling-to-mayo-clinic-minnesota/
Which Mayo Clinic will you be going to: Rochester, Jacksonville or Phoenix?

Jump to this post

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.

REPLY
@gingerw

@devsmaj Yes, any big step can cause such apprehension. And this certainly is a big step. That said, perhaps you can look at it from the other side of the coin. You have attempted all your other resources, and have the Mayo Clinic as "a last resort". If you do not take advantage of it, you will have lost. If you do take advantage of it, and testing reveals the problem, then you are on your way to a resolution, and that is a win.

Please let us know how everything goes for you and your son; we care.
Ginger

Jump to this post

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. 🙂

REPLY
@devsmaj

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. 🙂

Jump to this post

Hello @devsmaj

I can certainly understand that you must be feeling a lot of different emotions right now. When is your son's appointment? I will pray for him and wish you both calmness and an easy travel experience.

REPLY

@devsmaj – Your post was really interesting to me, because it's like the "parent" version of one I just wrote in the "Visiting Mayo" group (connect.mayoclinic.org/discussion/what-if-it-is-all-in-my-head/). I wish I had answers or reassurances to offer, but all I can really say is I feel a lot of the same things as you do. I really resisted the suggestions that I go to Mayo for several weeks; no matter how bad I feel, I never think I'm quite "sick enough" to warrant the financial expenditure (I'm also single, although in my 30s still trying to finish off student loans, car loan, etc.; the only chance I have of being able to pay for this is with the help of my parents/grandma) or the hassle – I seem to have this perception that since I'm not bleeding profusely, literally unable to walk at all, showing off-the-charts abnormal test results, absolutely completely out of any other even remotely plausible doctors or tests to try, routinely hospitalized, etc. that maybe I'm just "not trying hard enough" or that it's "all in my head". Being in the reverse of your situation (I'm the one being treated/someone else is paying), I am acutely aware of what kind of sacrifice and cost this would mean for my family, which pretty much triples my anxiety and guilt and doubt about whether I'm "that bad" or couldn't somehow fix it or feel better if I just "tried harder". I too have been on the rollercoaster of thinking "This next test/doctor/medication will have the fix" and being so disappointed that it doesn't. So why did I finally submit the application to Mayo? My dad. He's never questioned (at least to me) whether there really is something wrong, he's never complained about the additional financial burden, he's been an occasional ride to appointments or testing, he's been a sounding board when I'm trying to make decisions about next steps or having a breakdown, and, maybe most importantly, he's never shown a shred of doubt that we won't find an answer to this or get through it.

I don't know you, and I don't know your son or your full situation. But I wanted to share this with you for two reasons; first, I think it's important that you know how much impact you are having, and can have, on your son's ability to cope and keep going. When we're sick or struggling, we tend to be hyperfocused on ourselves and our own problems, and can have trouble recognizing that what we're going through is hard on those close to us too. Over ten years ago I had a really difficult patch in high school, and while I often admitted feeling guilty about being cranky or difficult with my family to my counselor, it never seemed to translate into my behavior and I never told my family. They moved heaven and earth to help get me diagnosed and treated, but I certainly never showed appreciation for it — looking back now, that almost makes what they did even more extraordinary since they kept fighting for me no matter how I treated them or whether I acknowledged their efforts. So, coming as a daughter and the sick one, I want to let you know that your care and determination DO matter and make a difference no matter if our words or behavior show that or not. On behalf of your son, thank you for what you're doing.

The other thing I wanted to emphasize is that just as you have your own doubts or fears that you likely hide from your son to protect him, he too probably has his own particular set of issues that he's dealing with that you might be completely unaware of. In order to continue being strong for each other, you both need to have a safe outlet to express those moments of weakness or fear. It's very possible (and even likely, based on my experience) that you're both putting on a good face or trying to bury the "bad" feelings to prevent the other from worrying, or out of fear of what the other would think or how they would react if they found out. I really suggest that you BOTH start seeing counselors to help you deal with the uncertainty, the fear, the anxiety, etc. As a caretaker, it's easy for you to neglect your own needs and health, but ultimately you won't be able to help or take care of your son if you don't take care of yourself. If you think of your body as a jar, the more you push down or ignore or deny your own needs or worries/fears, the less room you have in the jar to help carry any of your son's pain or worries. Eventually, those problems or negative feelings are going to overflow and show up unexcectedly or uncontrollably, or weigh you down so much that you can't do anymore and you collapse. The same is true for your son, except he's starting out with an extra big old rock in his stomach that's his actual physical illness weighing him down and making him "fill up" faster. Regardless of when you get a diagnosis, or what that diagnosis is, the "leftovers" from those feelings or the new ones that replace the old will still need to be dealt with. What your son is going through — feeling out of control of his own body and helpless to fix it — and what you're going through as a parent feeling his pain and feeling unable to help, is just really tough stuff. And the honest truth is, a diagnosis for a chronic problem is not likely to stop being tough just because it's diagnosed. We tend to think of diagnosis as the answer, the end of the road, but I can say from experience, it's usually just a change in focus from "What is it?" to "How do we fix it/live with it?" that presents a new set of challenges. I really encourage you both to get counseling, so those negative feelings aren't building up and slowing you down from conquering this.

I truly wish you both the very best, and send only good vibrations your way. Never forget or doubt that your son loves you and your efforts are meaningful to him, and seek counseling for you both to help deal with the inevitable challenges a chronic illness (diagnosed or not) brings. I'll keep my eyes peeled for an amazing story about how Mayo changed your life soon to help me maintain my own hope. Blessings!

REPLY

To devsmaj, my niece is 22 and had very similar symptoms a year ago. Hers was found to be a reaction to a vaccine, and has been having good success with a functional MD who works with helping the body expel the vaccine.
I don’t know if your son has had any similar experience. I send prayers for healing

REPLY
@peabody88

@devsmaj – Your post was really interesting to me, because it's like the "parent" version of one I just wrote in the "Visiting Mayo" group (connect.mayoclinic.org/discussion/what-if-it-is-all-in-my-head/). I wish I had answers or reassurances to offer, but all I can really say is I feel a lot of the same things as you do. I really resisted the suggestions that I go to Mayo for several weeks; no matter how bad I feel, I never think I'm quite "sick enough" to warrant the financial expenditure (I'm also single, although in my 30s still trying to finish off student loans, car loan, etc.; the only chance I have of being able to pay for this is with the help of my parents/grandma) or the hassle – I seem to have this perception that since I'm not bleeding profusely, literally unable to walk at all, showing off-the-charts abnormal test results, absolutely completely out of any other even remotely plausible doctors or tests to try, routinely hospitalized, etc. that maybe I'm just "not trying hard enough" or that it's "all in my head". Being in the reverse of your situation (I'm the one being treated/someone else is paying), I am acutely aware of what kind of sacrifice and cost this would mean for my family, which pretty much triples my anxiety and guilt and doubt about whether I'm "that bad" or couldn't somehow fix it or feel better if I just "tried harder". I too have been on the rollercoaster of thinking "This next test/doctor/medication will have the fix" and being so disappointed that it doesn't. So why did I finally submit the application to Mayo? My dad. He's never questioned (at least to me) whether there really is something wrong, he's never complained about the additional financial burden, he's been an occasional ride to appointments or testing, he's been a sounding board when I'm trying to make decisions about next steps or having a breakdown, and, maybe most importantly, he's never shown a shred of doubt that we won't find an answer to this or get through it.

I don't know you, and I don't know your son or your full situation. But I wanted to share this with you for two reasons; first, I think it's important that you know how much impact you are having, and can have, on your son's ability to cope and keep going. When we're sick or struggling, we tend to be hyperfocused on ourselves and our own problems, and can have trouble recognizing that what we're going through is hard on those close to us too. Over ten years ago I had a really difficult patch in high school, and while I often admitted feeling guilty about being cranky or difficult with my family to my counselor, it never seemed to translate into my behavior and I never told my family. They moved heaven and earth to help get me diagnosed and treated, but I certainly never showed appreciation for it — looking back now, that almost makes what they did even more extraordinary since they kept fighting for me no matter how I treated them or whether I acknowledged their efforts. So, coming as a daughter and the sick one, I want to let you know that your care and determination DO matter and make a difference no matter if our words or behavior show that or not. On behalf of your son, thank you for what you're doing.

The other thing I wanted to emphasize is that just as you have your own doubts or fears that you likely hide from your son to protect him, he too probably has his own particular set of issues that he's dealing with that you might be completely unaware of. In order to continue being strong for each other, you both need to have a safe outlet to express those moments of weakness or fear. It's very possible (and even likely, based on my experience) that you're both putting on a good face or trying to bury the "bad" feelings to prevent the other from worrying, or out of fear of what the other would think or how they would react if they found out. I really suggest that you BOTH start seeing counselors to help you deal with the uncertainty, the fear, the anxiety, etc. As a caretaker, it's easy for you to neglect your own needs and health, but ultimately you won't be able to help or take care of your son if you don't take care of yourself. If you think of your body as a jar, the more you push down or ignore or deny your own needs or worries/fears, the less room you have in the jar to help carry any of your son's pain or worries. Eventually, those problems or negative feelings are going to overflow and show up unexcectedly or uncontrollably, or weigh you down so much that you can't do anymore and you collapse. The same is true for your son, except he's starting out with an extra big old rock in his stomach that's his actual physical illness weighing him down and making him "fill up" faster. Regardless of when you get a diagnosis, or what that diagnosis is, the "leftovers" from those feelings or the new ones that replace the old will still need to be dealt with. What your son is going through — feeling out of control of his own body and helpless to fix it — and what you're going through as a parent feeling his pain and feeling unable to help, is just really tough stuff. And the honest truth is, a diagnosis for a chronic problem is not likely to stop being tough just because it's diagnosed. We tend to think of diagnosis as the answer, the end of the road, but I can say from experience, it's usually just a change in focus from "What is it?" to "How do we fix it/live with it?" that presents a new set of challenges. I really encourage you both to get counseling, so those negative feelings aren't building up and slowing you down from conquering this.

I truly wish you both the very best, and send only good vibrations your way. Never forget or doubt that your son loves you and your efforts are meaningful to him, and seek counseling for you both to help deal with the inevitable challenges a chronic illness (diagnosed or not) brings. I'll keep my eyes peeled for an amazing story about how Mayo changed your life soon to help me maintain my own hope. Blessings!

Jump to this post

@peabody88 Thank you ever so much for a well-written post, and the insight it offers!
Ginger

REPLY
@hopeful33250

Hello @devsmaj

I can certainly understand that you must be feeling a lot of different emotions right now. When is your son's appointment? I will pray for him and wish you both calmness and an easy travel experience.

Jump to this post

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

REPLY
@peabody88

@devsmaj – Your post was really interesting to me, because it's like the "parent" version of one I just wrote in the "Visiting Mayo" group (connect.mayoclinic.org/discussion/what-if-it-is-all-in-my-head/). I wish I had answers or reassurances to offer, but all I can really say is I feel a lot of the same things as you do. I really resisted the suggestions that I go to Mayo for several weeks; no matter how bad I feel, I never think I'm quite "sick enough" to warrant the financial expenditure (I'm also single, although in my 30s still trying to finish off student loans, car loan, etc.; the only chance I have of being able to pay for this is with the help of my parents/grandma) or the hassle – I seem to have this perception that since I'm not bleeding profusely, literally unable to walk at all, showing off-the-charts abnormal test results, absolutely completely out of any other even remotely plausible doctors or tests to try, routinely hospitalized, etc. that maybe I'm just "not trying hard enough" or that it's "all in my head". Being in the reverse of your situation (I'm the one being treated/someone else is paying), I am acutely aware of what kind of sacrifice and cost this would mean for my family, which pretty much triples my anxiety and guilt and doubt about whether I'm "that bad" or couldn't somehow fix it or feel better if I just "tried harder". I too have been on the rollercoaster of thinking "This next test/doctor/medication will have the fix" and being so disappointed that it doesn't. So why did I finally submit the application to Mayo? My dad. He's never questioned (at least to me) whether there really is something wrong, he's never complained about the additional financial burden, he's been an occasional ride to appointments or testing, he's been a sounding board when I'm trying to make decisions about next steps or having a breakdown, and, maybe most importantly, he's never shown a shred of doubt that we won't find an answer to this or get through it.

I don't know you, and I don't know your son or your full situation. But I wanted to share this with you for two reasons; first, I think it's important that you know how much impact you are having, and can have, on your son's ability to cope and keep going. When we're sick or struggling, we tend to be hyperfocused on ourselves and our own problems, and can have trouble recognizing that what we're going through is hard on those close to us too. Over ten years ago I had a really difficult patch in high school, and while I often admitted feeling guilty about being cranky or difficult with my family to my counselor, it never seemed to translate into my behavior and I never told my family. They moved heaven and earth to help get me diagnosed and treated, but I certainly never showed appreciation for it — looking back now, that almost makes what they did even more extraordinary since they kept fighting for me no matter how I treated them or whether I acknowledged their efforts. So, coming as a daughter and the sick one, I want to let you know that your care and determination DO matter and make a difference no matter if our words or behavior show that or not. On behalf of your son, thank you for what you're doing.

The other thing I wanted to emphasize is that just as you have your own doubts or fears that you likely hide from your son to protect him, he too probably has his own particular set of issues that he's dealing with that you might be completely unaware of. In order to continue being strong for each other, you both need to have a safe outlet to express those moments of weakness or fear. It's very possible (and even likely, based on my experience) that you're both putting on a good face or trying to bury the "bad" feelings to prevent the other from worrying, or out of fear of what the other would think or how they would react if they found out. I really suggest that you BOTH start seeing counselors to help you deal with the uncertainty, the fear, the anxiety, etc. As a caretaker, it's easy for you to neglect your own needs and health, but ultimately you won't be able to help or take care of your son if you don't take care of yourself. If you think of your body as a jar, the more you push down or ignore or deny your own needs or worries/fears, the less room you have in the jar to help carry any of your son's pain or worries. Eventually, those problems or negative feelings are going to overflow and show up unexcectedly or uncontrollably, or weigh you down so much that you can't do anymore and you collapse. The same is true for your son, except he's starting out with an extra big old rock in his stomach that's his actual physical illness weighing him down and making him "fill up" faster. Regardless of when you get a diagnosis, or what that diagnosis is, the "leftovers" from those feelings or the new ones that replace the old will still need to be dealt with. What your son is going through — feeling out of control of his own body and helpless to fix it — and what you're going through as a parent feeling his pain and feeling unable to help, is just really tough stuff. And the honest truth is, a diagnosis for a chronic problem is not likely to stop being tough just because it's diagnosed. We tend to think of diagnosis as the answer, the end of the road, but I can say from experience, it's usually just a change in focus from "What is it?" to "How do we fix it/live with it?" that presents a new set of challenges. I really encourage you both to get counseling, so those negative feelings aren't building up and slowing you down from conquering this.

I truly wish you both the very best, and send only good vibrations your way. Never forget or doubt that your son loves you and your efforts are meaningful to him, and seek counseling for you both to help deal with the inevitable challenges a chronic illness (diagnosed or not) brings. I'll keep my eyes peeled for an amazing story about how Mayo changed your life soon to help me maintain my own hope. Blessings!

Jump to this post

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.

REPLY
@suzmay

To devsmaj, my niece is 22 and had very similar symptoms a year ago. Hers was found to be a reaction to a vaccine, and has been having good success with a functional MD who works with helping the body expel the vaccine.
I don’t know if your son has had any similar experience. I send prayers for healing

Jump to this post

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

REPLY
@devsmaj

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

Jump to this post

The problems started soon after her third dose of the Giardisil vaccine. But She did see several MDs for her GI issues, had endoscopy, other diagnostics. At her wits end, my sister-in-law took her to specialists at University of Michigan.
This happened to my niece

REPLY
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