Cyclic Vomiting Syndrome Message Board
Register Calendar Latest Topics
 
 
 


Reply
  Author   Comment  
Ddirose

Registered:
Posts: 25
Reply with quote  #1 
Hi, I’m Ellie’s Mom. :) I have posted here before. Ellie has had CVS since she was about 5 years old. She is 18 now. She cycled yesterday for the first time in 19 weeks. While it was painful to see her this way again, it was an all time record. She was cycling every 6 weeks, previously it was less than that. We believe she is a calendar kid with her cycles.

Today is the first day she has ever asked me if I thought she would ever meet anyone else with CVS. I asked her if she would like to, and what she would say to them. She said, “I would probably just hug them.” I think she’s at the point in her life where she could use a CVS buddy.

If there is anyone within an hour or two of Ann Arbor that has a child who would be interested in starting to chat with her, and possibly meet someday, please, please answer this. Even if your not that close, that’s ok too. Like I said Ellie is 18, but she’s very small, she’s only 4’11. They don’t have to be here age, a little younger or older is fine as well. Although she has a great support system, I think she wants to have someone who can look at her and say, “I completely understand.”

Thanks for reading, and I hope to hear from someone. :)
0
ginny

Avatar / Picture

Moderator
Registered:
Posts: 4,513
Reply with quote  #2 
I hope Ellie can make it longer than 19 weeks and be done with CVS.  Your best bet for kids around her age might be to contact CVSA and ask Debbie to check the data base for members in your general area.

Another thought might be the college kids Facebook support page. If she does not get to meet other kids around her age, it might be helpful to be on the College Facebook CVSA page.  She could at least "chat" with some kids.

Blynda has a son around Ellie's age and might have better ideas.  She is just getting back from the CVSA Family Conference and might not be back on the message board for a bit.



__________________
ginny CVSA Moderator
0
Ddirose

Registered:
Posts: 25
Reply with quote  #3 
Thanks Ginny. I was praying so hard she was done with this. But we had 19 weeks, and 19 is better than 6. I tried the Facebook group and they never responded to my request. [frown] I guess I’ll try again. Is the contact number for Debbie somewhere on the website here?
Always appreciate your help!!!
0
Ddirose

Registered:
Posts: 25
Reply with quote  #4 
One more thing too Ginny. She is struggling again tonight, and we are trying some new meds on her. She did this last time, cycled at night into the next day, got up and had an ok day, sore but no vomiting, and then the next day it tries coming back again. Isn’t it said that this is just the same cycle that’s not finished?
0
ginny

Avatar / Picture

Moderator
Registered:
Posts: 4,513
Reply with quote  #5 
My understanding is that what you are describing is a cycle that did not complete.  Dr. Fleisher said that sleep resets the brain. He said 3 hours (as I recall) or more of deep sleep.

I cannot imagine who is moderating or running the FB college page and not responding.

Probably best to email Debbie at the office:  CVSA@CVSAonline.org

good luck,I remember those days with long spans between cycles and the disappointment when the next cycle hit. I hope she goes longer and longer between cycles.







__________________
ginny CVSA Moderator
0
wynnak

Avatar / Picture

Moderators
Registered:
Posts: 761
Reply with quote  #6 
I will mention that the College group is no longer associated with CVSA. Not sure what happened there. It seemed to fizzle out. The teens and college age kids tend to not want people to know they are sick.

I wish you guys could have come to the conference. We had more people from Michigan that we did from Milwaukee.. Or so it seemed. More teens this year than previously. Or parents that came because of their teen.

Has your daughter called in on the support call? I can see if my son would join the next call. 

I will tell you that because of HIPPA, we can no longer disclose that people live near you. So that may be an issue with doing what you are looking for. The Run that happened in June was how my son met others. Then the conference. If Debbie has had people reach out and are looking for that specific support, than we can release info. 

I will tell you that we are working on initiatives like these. We would like people to be able to contact people with certain criteria, or have a support call for teens. The biggest struggle with that is having the volunteers that are willing to commit to it. We are working with a new volunteer that specializes in Volunteerism. SO on the horizon. 

If you want to encourage your daughter to join the support call, I will consult my son to see if he would participate as well. I believe that it is next week. So not a terribly long time to wait.

__________________
Blynda
Message Board Moderator
Monthly Support Call Moderator
0
Ddirose

Registered:
Posts: 25
Reply with quote  #7 
Thanks Blynda. I will ask her about the call. What exactly is it???
0
wynnak

Avatar / Picture

Moderators
Registered:
Posts: 761
Reply with quote  #8 
Just a way to talk to others. The conversation is steered by the people calling in, questions they ask, etc
__________________
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.