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wynnak

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Reply with quote  #1 
For me it was a combination of things.. But the biggest was desperation. 

We were desperate for answers and help and direction. 

We felt alone in what was happening to us.. 

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Blynda
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Chelle

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Reply with quote  #2 
I agree with you Blynda... feeling desperate for someone to understand what we go through and feeling depressed because I can't fix my boy.  As a mom, I just want to help/fix my kids. Here we are years later and still feeling the same way. I am thankful for this message board and for CVSA.   FB private groups have also been helpful at times.  This message board is better than FB groups in my option.  Thanks for being the Moderator looking forward to meeting you at the end of the month. 
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Chelle
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wynnak

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Reply with quote  #3 
This story is going to be a bit long.. But, applies to what you are saying.. I wanted to be able to help and felt helpless.

So at my sons' worst, he had what we called the nest.. A mattress and blankets and pillows on the floor. He didn't have enough energy to get back in bed. We had a stack of the pink vomit Buckets on the floor next to him that we would just grab the top one and clean it each time he got sick. He would just lay there and let the vomit roll out. Would barely move. One day I walk by and hes laying on the floor, listening to Evanescence's "Broken". Do you know the song? If you don't, go find it on Youtube.. it's awful.. especially when you see how "broken" you child is. I used to like the song.. now I want to throw up each time I hear it. 

I was driving home from work one day and Coldplay's song "Fix You" came on. I bawl every time I hear that song.. Because all I wanted to do is fix him..  (listen to that one if you need some drive) 

It is a theme song of sorts. 

I get me good cry out, then get to work on what I can do to fix him and others affected with CVS.

Thank you for your sweet sentiments.. The Message boards have been my lifeline for years. Ginny, Ginny has been my life line. Ruth, that used to be in the office.. But Ginny.. Has always amazed me. I do not think that there is a way to thank her for what she has done for so many people.. But I will continue to thank her. She will be keeping this going while we are at the conference.. She is a typical CVS mom.. that just makes it all fit. 

I look forward to meeting you too. I feel like we were on our journey together. 




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ginny

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Reply with quote  #4 

Gosh, what a huge compliment.  I am not even all that up to date, just a mom who does not want to ever face CVS again and hoping we can figure this condition out.  It is almost unbelievable that something so horrendous is a function disorder.  I hope we can keep digging and finally figure this out.

We learned about the supplements because a member posted about them.  Then a new MB member was about to cycle, called me upset and panicky.  We decided she would try the supplements and sure enough she prevented the cycle.  She is well and no longer suffering but also off the message board.  

The two of us ran an anecdotal study with Dr. Boles blessing and guidance.  This is how the supplements became a standard in treatment.  There might be more of these breakthroughs by the chatter on the message board.  Lets keep hoping.


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Chelle

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Reply with quote  #5 
I feel a Toby Mac song called Move is a good encouraging song. Sometimes I do just need to let all the frustration out by crying. It just seems like there is always something major going on or going wrong with my kids.  School is such a cause for frustration and anger in this house. My daughter has Dyslexia and Anxiety which makes school sooooo hard on her. My son just wants to go back to school but doesn't feel he is up to it.  The current online school he is doing is okay, but not great and he doesn't learn well without a teacher.  We have tried homeschool, and this is the 2nd online school. Nothing works "good" for either of my kids.  I think by the end of every school year I am so excused and unsatisfied with the past year I just want to cry.  I feel like there has to be a good fit for my kids and school where they are comfortable and learning.  

The new Neuro wants to run an EEG, I don't see that we have had that test before.  I am working on his medical binder and working on putting together a list of all his test and all the medications we have tried. I have the info in a spreadsheet by year, but now I want one spreadsheet that just shows only test and medications and dosages of the medications he has tried.

Thanks so much for keeping it running and for all your help and advice Ginny and Blynda.   I will keep you posted as we move forward with this new NEURO.   

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Chelle
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wynnak

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Reply with quote  #6 
Chelle,

Talk to your local school. You maybe able to have him do independent study with an extension area of the school. COmbined with a class or two at school. There are charter schools that send a teacher to you. There are also charter schools that mix home school with virtual classes. I can not tell you how many options there are. It is about finding them, and finding what works for you. 

My son lost most of his friends when he started getting sick. Was kicked out of his band. THe ones that did check on him now and again even now have moved on.. so school or not.. those things change. They get girlfriends and jobs.. and it happens anyway. One of the reasons that I am okay with the gaming. He is talking with his peers. Interacting even if only online. He has a gaming group that he got into and has regular sessions with them. There is no talk of illness, because let's face it.. they don't like to talk about it anyway. My son did meet several girls in the hospital each time he went in.. 😉 he always left with numbers.. So even though they don't fit into the "normal" idea of a teen. It works for them. Plus, I tell my son I would be disappointed if he was "normal"! I'm not.. so I'm supportive of different and unique. 

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Chris808cvs

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Reply with quote  #7 
All I want is an ER doc that will treat for pain interveniously so that my attacks stop immediately. I have a serious attack once a month usually and it’s a nightmare not knowing if the pain will go away during “this visit”. One ER doc gave me haldol and I wanted to jump off the roof of the hospital! Does anyone have suggestions for consistent ER care?

*mg of dilauded and anti anxiety is only meds that abort episode. Stomach GI just shrugs shoulders tells me I got a tough condition and tries explaining opioid epidemic..... my internist is only doc consistent and straight up with me. Please help. This is why I’m on the message board.

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Christopher Dewhirst
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wynnak

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Reply with quote  #8 
Hi Chris,
Have you tried having your Internist write a Protocol for you for the ER?

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Blynda
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Chris808cvs

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Reply with quote  #9 
He has but it has actually had the opposite effect where the ER docs say “there is no such thing as protocol” they tell me that each doctor is different and it’s a hit or miss with ones who believe my pain. My blood pressure is normally 120 at ER it’s 240 sometimes. I Would love to be part of the monthly call groups if possible? I don’t understand how some people don’t have the pain and anxiety as severe as I do either. Is it possible I have a severely extreme case? I know some people have more frequent episodes but I think mine are beyond the scope of pain others feel. I can live with this disease but I cannot live with the pain as a result of the anxiety and stomach tightening up.
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Christopher Dewhirst
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wynnak

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Reply with quote  #10 
Have you gotten a list of Doctors from the office that can work on getting you preventative medication?

We ended up with a neurologist that addressed the abdominal pain as an abdominal migraine. Sometimes that is easier to get the doctors to address, especially in the ER. The ER wa never a good pace for us.. we would get fluids and sent home. That was it. My son writhes and cries and screams at his pain. Curls up in the fetal position and writhes. It is horrific to watch so I know the experiencing it is worse.

The neurologist was able to get us on track with taking meds for migraines especially when the main component of it is the pain.

My heart goes out to you. The support call has happened for June. Watch fcor July’s posting..

Is you also look for ER treatment using the search option, there are lots of conversations about it.

Ginny will chime in too.

But we are glad you found us. Let’s see if we can get you through it easier..

Have you tried the supplements found on the webpage? Some find that helpful.

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