Booked Mayo for My Son - Now Frightened

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

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

@gingerw - Thank you very much; the compliment was very much appreciated. It's always nice to think that just maybe, the pain and challenges you went through can somehow help or teach others (without quite as much pain/heartache you had to go through to figure them out). And going through some recent health issues myself, that compliment and little boost of confidence and "warm fuzzies" means even more!

@devsmaj - Thank you, also -- your comment about being in some sort of field where I help people almost moved me to tears.

I'm very glad you understood the sentiment behind it -- when I was looking at it later, I started worrying that I rambled at a few points, or that it might come off as "preachy".

I'm happy it seems to have brought you renewed energy and inspiration, and confidence that you'll both get through this. I also want to make sure you realize though, that your feelings -- the worry, the doubt, etc. -- are absolutely understandable and "normal", and expressing them like you did in your post is incredibly important and brave. I don't want you to feel ashamed or embarrassed that you have doubts and have bad days and have moments where it all seems hopeless. I have -- and STILL -- have those moments and feelings and honestly complete breakdowns myself -- I challenge you to find one person dealing with a chronic illness, or caring for someone with a chronic illness, who doesn't have those feelings. As much as I try to be or wish I was, I'm not perfect -- no one is -- and that's okay. That's why I find that second part (seeing a counselor) also so important (had an appointment today myself as a matter of fact) -- you want to stay strong, and always have faith that you'll get through this, but you also can't deny or push down or feel bad when you DON'T feel that way. It's a delicate balance, and having an outside, unbiased reflection with a counselor can be a huge help.

You mention "putting too much stock" into the diagnosis. One of the funny things about these posts and discussions is I'm often writing/talking to myself as much as the other person. Above, when I talk about not being perfect and that being okay? I'm reminding myself of that. For whatever reason, I've always been much kinder and compassionate towards others than myself. Wanting so badly to help you (or anyone) realize something, like it's okay not to be perfect or you can't expect a diagnosis to be a magic overnight cure, helps ME accept those things myself. Kind of like "it's easier to see a stone in your brother's eye than your own", I tend towards "it's easier to remove a stone in your brother's eye than your own", but to get a really good, honest look at it I have to deal with my own "stone" first, so I'm trying to convince myself just as much as you.

And absolutely yes, I know exactly what you mean about having a diagnosis meaning you at least hopefully have a better idea of how to cope. My concern was (and again, it's rooted in my own struggle with this), I want to make sure you don't try to put your needs "on hold" expecting the answer any day now. I kept putting off Mayo expecting that the next doctor/test/suspicion would be the answer and everything would suddenly go back to normal overnight. I had to accept that even getting a diagnosis wouldn't save me from the fallout of dealing with chronic health issues in order to help myself prioritize seeing a counselor and getting help now. It's just important to recognize that with a chronic illness you can't put everything on hold until that elusive diagnosis or miracle cure like we often do with a short-term or emergency issue; you have to address it with or without a diagnosis to stay strong enough to make it TO diagnosis.

When someone's dealing with something that I had to conquer, and I share what I've learned, it can seem like I have all the answers or have everything figured out, when boy, if you look at my discussions I've started that sure is not the truth! I'll remind you -- and me -- I'm not perfect. You're not perfect. And that is absolutely okay.

Stay strong, but don't feel guilty when you inevitably go through times when you aren't. We're all dealing with our own struggles, and have our own special areas of wisdom. And soon, I'm sure I'll be having a bad day or struggling with doubt, and it'll be reading YOUR story about how you and your son kept trying and found a way to deal. We all "fall" and struggle with different things and at different times for a reason: to be able to help pick the other up when it's their turn.

Best wishes for you both!

@devsmaj
I applaud you for your courage and I understand your fears! I hope you and your son stay strong and get the answers that you need. Be blessed!

Sending lots of "warm fuzzies" your way today, @peabody88

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.

@devsmaj Ask them to put you on a cancellation list for the days you are there, in case opening comes up with the gastro Dr. Is there a social worker or patient advocate that can go to bat for you, explaining your circumstances?
Ginger

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.

Hello @devsmaj,

I'm so glad you've reached out to the Connect community - as parents, we do everything we can to try and keep our kids healthy, so it can be devastating to see a child fall ill and in pain, despite everything.
Since you mentioned that you reside in Canada, I was wondering if you knew about these services offered by Mayo Clinic:

– Mayo Clinic Information Service in Canada: Canadian patients are provided timely appointments with specialists who work together to provide comprehensive care that meets the exact needs of each person. https://www.mayoclinic.org/departments-centers/international/locations/canada

– Independent Referral Facilitators for international patients: Mayo Clinic works with independent referral organizations that facilitate the referral process for patients to all its campuses. These referral facilitators work with Mayo Clinic to establish a reliable process for assisting patients who wish to visit Mayo Clinic for health care services.

In Canada:
MyCare
http://www.mycare.ca
Address:
Suite 102, 1371 W. Broadway
Vancouver, British Columbia
Canada V6H 1G9
Phone number: 877-497-9495
Contact email: mayo@mycare.ca
Contact person: Alyssaa (Lisa) Delmars
https://www.mayoclinic.org/departments-centers/international/locations/independent-referral-facilitator-canada
I wish you and your son all success; please keep sharing any updates, and/or questions you might have - we're here, listening.