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KerryAnn

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Reply with quote  #61 
Hi~~new to this forum and looking for docs in the Sonoma County, California area. Any good leads out there? Thanks!
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KerryAnn Laufer
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wynnak

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Reply with quote  #62 
KerryAnn
We go over to UCSF. Are you looking for peds? We see Amy Gelfand at the headache center.

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Blynda
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cathyj

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Reply with quote  #63 
Hello all, I am new to this site. I am a mom of a 14 year old son recently diagnosed with CVS.  We've been to 2 gastros, 2 allergists, endocrine and finally neurologist. We have lots of meds that don't seem to be working. He is on day 6 of an episode. He has missed 23 days of school, his freshman year of HS. It is a nightmare. While the neuro has been somewhat helpful, I feel that we need to see a doctor who specifically specializes in CVS. I found Dr. Sunku's name on this website and have made an appt. (He is located in Westchester county, we live on Long Island, would love to find someone closer!) Wondering if anyone has used him or one of his colleagues? thoughts/ feedback? Other suggestions welcome. thank you!
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robyntm

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Reply with quote  #64 
Hello,
Im in Fairbanks, Ak can you help me find CVS doctor anyplace near.

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robyn ROBYN MILLER
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ginny

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Reply with quote  #65 
To locate a doctor please email Ruth at the CVSA office.  (cvsa@cvsaonline.org)

Ruth has the most up to date information on doctors in the US and Canada treating adult and pedi CVS.

There are many more adults who are also successfully helping patients with CVS.  If you hear about a good doctor, please post on this forum the name and town where this person practices so we have multiple resources for medical care.

Your own doctors might be willing to call a CVSA Medical Advisor to create a plan for treating you.

And if at all possible, taking a trip to WI to see one of the CVSA Medical Advisors is well worth the expense and effort.  The doctor will finish running any tests that should be done, send you on to other departments if needed, and work with you and your home team on a treatment plan.

 

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ginny CVSA Moderator
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liz42

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Reply with quote  #66 
Does anyone know of a Dr. in the 4 corners area? That's CO, UT, NM, and AZ. 
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Liz
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jojo2059

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Reply with quote  #67 
Hi all we are new to this site my name is Jolynn Bommarito. I have a special needs adult son named Timothy who is 25 that has CVS. So nice to finally find a place for some answers to our questions. Does anyone know how to get a direct admit to the hospital for this horrible condition?
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ginny

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Reply with quote  #68 
Hi jojo and welcome.  Direct admission is arranged with your primary care doctor.  We had direct admit when our daughter was in pedi and it was so much better than going through the ER.  

There is a professional pamphlet for doctors that you can request the CVSA office send to your doctor as well as the Empiric Guidelines (on the CVS web page)which state that quick treatment is important.  Sometimes taking the Guidelines to the ER can help as well as bringing your sons history with admissions.  For us, a direct admit meant less time sick and a speedy recovery vs long time in a cycle and weeks to recover.

Good luck and please let us know how things are going.

You might want to try the tele-conference support calls on Thursdays.  Information is pinned on the adult and main forums.

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ginny CVSA Moderator
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jojo2059

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Reply with quote  #69 
Thank you so much Ginny.
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Dades_mom

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Reply with quote  #70 
Our son is going to be 16 this year and has had CVS for 12 years.   I know we need to start considering looking for an adult GI doctor to help him transition adn be ready for college.  He is currently treated at Cook's Children's in Fort Worth by the GI clinic.   I would like to inquire about recommendations for and adult GI physician in this area who is known for being familiar with CVS history in patients.   Dr. Ogunmola here in DFW is the best physician our child has ever had since he was diagnosed 2005 and started treatment here in 2012.  Thank you
Colene

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colene bryand
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ginny

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Reply with quote  #71 
Thank you for posting the name of your great doctor.

Ruth at the office has the list of doctors who practice in each area.

We remained with a pedi GI until around age 25 or so.  Each state has guidelines on adult age.  College was an okay experience, there were a couple of decent hospitals and a good infirmary available.  


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ginny CVSA Moderator
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jmcgivern35

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Reply with quote  #72 
Quote:
Originally Posted by hop
I'm new to the site but not to CVS. I've had it since 1996. I was about to write a small introduction of myself when I saw this question.
 
I'm in the Atlanta area and we have the most wonderful doctor who treats about 30 patients with cvs from all over Georgia. His name is Dr. Patrick Waring and he works out of Piedmont Hospital. After my first exam with Dr. Waring, I thought I could hear the angels in heaven break out in song! You mean, I had found a doctor who knows what this is and is successful in treating it!!!
 
Good Luck in finding a Doc.
 
 
Thank you for writing this suggestion! I live in Cartersville, GA and most doctors here look at me like I have 5 heads when I say CVS...I will definitely be calling and making an appt with Dr. Waring! Thanks again!!!

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Jenni McGivern, 12 yrs with CVS/abdominal migraine, GERD, hiatal hernia. 
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Amberb

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Reply with quote  #73 
I need a doctor in Houston Texas ASAP any suggestions appreciated
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ginny

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Reply with quote  #74 
Please call or email the CVSA office to get a list of doctors in your area.  You can email Debbie at cvsa@cvsaonline.org

Good luck,

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ginny CVSA Moderator
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ada

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Reply with quote  #75 
Hello. I am new in this group and I bumped in hoping to find some answers for my 6 years old daughter. She has CVS since she was 2. One crisis every 2 months. I was wondering if anyone could recommend a clinic or doctor in Europe. Us is a bit too far. Unfortunately, for me it seems that the doctors who saw her so far were too many and no one of them knew how to deal with this. Apparently, here we don't have too many cases. Only one doctor knew a little bit about the disease, but she prescribed immediately amnitriptirine and I don't want to start directly with this, given its side effects. Also, a list of the tests you had to find out diagnostic and treatment would really help me. Thank you
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