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paulgifford

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Reply with quote  #1 
I don't know what else I can do for my wife. I am at the point where I want to strangle any of the specialists becuase they are clueless. A lot of the drug and treatments have been nothing but failed attempts that has depeleted our hope and trust in the system.

We need the help of someone who knows what they are doing.
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ginny

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Reply with quote  #2 

Is it possible to be referred to the US so your wife can be seen by Dr. Venkatesan?  or for her doctors to call Dr. V for treatment suggestions?

The newsletter Code "V" was mailed out last week. The front page has a large article on the latest research and lists some newer medications that are helping some with CVS.

If you contact the CVSA office you can request a support call, a professional packet sent to her doctor, and patient packet sent to you.  Are you using the Empiric Guidelines for help in creating an effective treatment approach?

CVSA sponsors a support call every month where people can "meet" by conference call and hopefully support each other. The call directions are on the Main Forum and the date is the second Monday of every month.

I think I would push hard to get to WI to see Dr. V.  Please update us and let us know how things are going.


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ginny CVSA Moderator
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paulgifford

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Reply with quote  #3 
Thanks Ginny

Beth has been to see her and the Empiric Guidelines are not yielding any results for her.  Most of the treatments or medications have made things worse and not better.  I will take a look for the newsletter and see what it says.  Is there a digital copy that I can take a look at?  

Thanks
Paul
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ginny

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Reply with quote  #4 
I don't think there is a digital copy.  The office can probably easily scan that report to you.  I can also scan the report from my office tomorrow and email over to you.

The new medications mentioned are Aprepitant & its "prodrug" Fosaprepitant (for prevention of cycles).  The article states that a recent study of children finds that 76-81% achieved partial to total complete remission. I think this is also used in adults.

I will scan the article to you tomorrow.  




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ginny CVSA Moderator
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MannionUSMC

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Reply with quote  #5 

Hey.  Have you called Dr V's office.  I know you live in Calgary and it may seem like it's not possible she will see you (insurance and stuff), but she sees people from all over the world from what I understand.  They may be able to work something our with you guys and I really went once and had my GI doc (who is a good GI doc) just liaison with her if we had questions. 

So I know a good deal about CVS, and have been out to Dr V if you had any questions about that.  I am sorry you guys are going through this, it is seriously one of the hardest times in CVS trying to find a care team that works.  Until then everything seems like madness because most medical establishments will shift blame onto a patient without a care team. 

Well a lot of doctors will not take on hard patients...plane and simple.  They do not want the late night calls, extra work, learning what it would require to take a CVS patient on.  Hopefully that will change soon.  We are becoming exotic and I have had more docs stop by to come see me and poke at me like I am in a zoo and my Mitochondria will speak to them just because I am the CVS patient.    

Hang in there.  You are great for searching for answers and being a caregiver. 

PM me if you have any questions.

Just keep Swimming. 

Mannion

 

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wynnak

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Reply with quote  #6 
We also did all of Ginny's ideas. We educated our doctors. But did what Mannion suggested.. Called Dr V's office. They worked with our Doctors when my son needed help desperately. I will also share with you that when my son was at his worst, it was because they kept throwing medications at it. Never taking any away. They ended up over-medicating him and making his symptoms worse. I worry about this more often then I should. But I too was at your point. Well beyond. We changed doctors several times. Pediatricians.. countless GI's.. several neurologists. 

I'm so sorry that your wife and you are struggling so. We have all been to what seemed like our breaking point. Stay strong and keep fighting. We had to keep pushing for things stronger than zofran, if nausea was our worst symptom. It helped us focus on something. You're doing the research.. your offering support. Keep it up. 

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ginny

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Reply with quote  #7 

Paul, reviewing this thread I think I know Beth.  We have not heard from her in a long time and I do think about her.  I am sorry she is not doing better.  She struggled but succeeded in making it to the family conference a few years ago? I admired her strength to get here. 

Can you get back to WI?  I don't know what else to suggest.  Please stay in touch. 


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wynnak

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Reply with quote  #8 
Paul, 

Checking in on you and Beth. Hoping that being quiet means that there has been a turn around.

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paulgifford

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Reply with quote  #9 
Hi

Quiet is definitely not better in our case - more like worse.  We are still really struggling and haven't gotten anywhere with the recommendations, etc. 

Being from Canada doesn't help either. Out GI and neurologist are clueless and my GP is trying to find anyone that can help. 

Just trying to get by day by day. 
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paulgifford

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Reply with quote  #10 
Ginny - Beth says to say hello.  You really helped her out a while back and she is grateful for that. 

Quote:
Originally Posted by ginny

Paul, reviewing this thread I think I know Beth.  We have not heard from her in a long time and I do think about her.  I am sorry she is not doing better.  She struggled but succeeded in making it to the family conference a few years ago? I admired her strength to get here. 

Can you get back to WI?  I don't know what else to suggest.  Please stay in touch. 

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paulgifford

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Reply with quote  #11 

Does anyone know if any of these medications would be helpful for Beth? 

We are using diphenhydrAMINE injection today but it barely works as well as the original Promethazine.

https://medicalstaff.covenanthealth.ca/media/247444/20160418_promethazine_injection_discontinuation.pdf

Thoughts? Recommendations please? 

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wynnak

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Reply with quote  #12 
Paul, 

That is Benedryl. It is one more of the meds used to treat CVS. It works well for some and not at all for others. Are they giving to her in combo with anything else? Or just the benedryl?

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Blynda
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paulgifford

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Reply with quote  #13 
Quote:
Originally Posted by wynnak
Paul, 

That is Benedryl. It is one more of the meds used to treat CVS. It works well for some and not at all for others. Are they giving to her in combo with anything else? Or just the benedryl?


Yup - I am aware that it is Benadryl, we use it as a part of an abort that includes ZOFRAN (GENERIC ONDISSOLVE) DISSOLVABLE (* mg) and LORAZEPAM (* mg)

Promethazine was great until they killed it.
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wynnak

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Reply with quote  #14 
Were they using that as a secondary nausea control for the Vomiting? Lorazepam is good for the anxiety/pain aspect and typical to use. We use Benedryl and compezine combo IF it is for abdominal migraine type issue. If it is more just nausea/ vomiting the med routine changes.

I will tell you, and you can see from my post history.. we went through TONS of struggles. We changed Doctors. A Lot. It sounds like you have one that is at least trying things for you. THAT is crucial to success. But I agree that finding a specialist that KNOWs about and Cares about helping.

Are you trying to stop an Episode? Or is she coalescing? Are the episodes increasing in frequency and severity? Is there something we can help you focus on discussing that we may have suggestions or ideas for? 
 

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paulgifford

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Reply with quote  #15 
She is in non stop coalescence right now. We use the abort for bad nausea but haven't found a thing to touch the abdominal  migraines.  

Can you tell me more about the Benedryl and compezine combo? 
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