Cyclic Vomiting Syndrome Message Board
Register Calendar Latest Topics
 
 
 


Reply
  Author   Comment  
wynnak

Avatar / Picture

Registered:
Posts: 549
Reply with quote  #1 
2017 CASocial.jpg 

__________________
Blynda
Message Board Moderator
Monthly Support Call Moderator
0
kf

Registered:
Posts: 10
Reply with quote  #2 
Thank you for posting this. Are there others on the message board who plan to attend? 


__________________
Karen
0
wynnak

Avatar / Picture

Registered:
Posts: 549
Reply with quote  #3 
Hi Karen,

Not really a way to tell, unless you ask. Most people peruse the info and that’s about it. Same as on our Facebook page.
I live in Northern California and am trying to decide if I’m going to go. It would be quite a lot of driving for a two hour meeting. Plus, I was just there. Hard to decide if I want to go and take my CVSer, or wait and go to the conference in 2018.

__________________
Blynda
Message Board Moderator
Monthly Support Call Moderator
0
kf

Registered:
Posts: 10
Reply with quote  #4 
Thanks so much for responding.  I am in southern CA, and it's a long drive me as well.  :-) 
__________________
Karen
0
wynnak

Avatar / Picture

Registered:
Posts: 549
Reply with quote  #5 
Hi Karen, 

My son and I have decided to go. Do you think you will? 

__________________
Blynda
Message Board Moderator
Monthly Support Call Moderator
0
kf

Registered:
Posts: 10
Reply with quote  #6 
I would like to go but decided against it as I seem to be going the wrong direction on the CVS front.  So it's seems wisest to avoid the trip.   

In any case, thank you for all of the information and support you have shared with the CVSA community.  

Karen



__________________
Karen
0
wynnak

Avatar / Picture

Registered:
Posts: 549
Reply with quote  #7 
I know how that is.

We had to wait to decide to go, to see how my Son fared through our trip last week.

He is pretty exhausted.. and that is never good. But we know that he takes time to recover from the exertion and the motion sickness issues. We have traveling plan is place for supporting his struggles. And know that we need to take time. Hopefully, just being in the car will be okay with him. We will use our abort meds and travel helpers. 

With the ADHD, have you had the genetic testing for Mito? See if they have a better way of addressing the CVS with that?

__________________
Blynda
Message Board Moderator
Monthly Support Call Moderator
0
kf

Registered:
Posts: 10
Reply with quote  #8 
I have not.  I have seen a researcher at UCLA who specializes in CVS a few times. He was quick to point out, however, that he is not a treating physician but rather a researcher who is willing to offer some occasional treatment.  Attempting to address CVS with other doctors has been a fairly painful process. I have had the drug seeking assumption at one doctor's office and the overdose (with forced catheterization for a drug screen) assumption at one ER. I know others have been through much worse. But I just cannot gear myself up for going back through the ringer at this point.
__________________
Karen
0
wynnak

Avatar / Picture

Registered:
Posts: 549
Reply with quote  #9 
Dr. Emeran Meyer is a Doctor at UCLA that is on our Referral list. I believe that Dr. Boles was at The Children's hospital there at one time. I understand your feelings. My son is being pushed into adult care due to his age.. and it's like starting all over again regardless that he has been being treated for CVS for 7 years now.
__________________
Blynda
Message Board Moderator
Monthly Support Call Moderator
0
Previous Topic | Next Topic
Print
Reply

Quick Navigation:

Easily create a Forum Website with Website Toolbox.