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ChrisVicky

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Hi, our family just started our journey with CVS, my son is 19 years old, college student, is in his third episode as an inpatient in hospital.   We are not native to Wisconsin, we live just outside Cleveland, Ohio.   The syndrome began in early November, and has been like clockwork since, 6 days of violent vomiting, pain and nausea, with no ability to retain food, every 5-6 weeks.   He has lost 15 pounds, although has been down as much as 25 (from 170 to 145) during the worst of it.   Our GI offered diagnosis of CVS.   Kid is a casual, albeit infrequent, marijuana smoker but otherwise healthy.  Good student, athlete, plays soccer at school.  Not great eating habits but not very different from most kids that age.  No history of GI issues or migraines.   

My question for the group, is Dr. Vankatesan the number 1 resource in the US for a solution?   As a family, we have unfortunately experienced some pretty significant health challenges over the years, our default is to figure out the best expert in the country and then get in front of that expert immediately.   Dr. Vankatesan has availability on Monday.   Is she who we should see, or is there another practice elsewhere in the US with more resources.    We are located in Cleveland so Wisconsin is doable, although not easy.   Thanks in advance for your reply.  Also posting an introduction on general board.

Chris

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bspin26

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Reply with quote  #2 
Hello. My son was diagnosed at 2 with CVS.  He is 12 now.  His diagnosis came from me pushing for someone to listen to me that he did not just have a stomach virus every 2 weeks.  I kept intense records of everything he ate, when he slept and how long, activities.  We were sent to the Cleveland Clinic. There are a few doctors there who specialize in CVS. two are GI docs and one is a Neurologist. The one we are seeing is a pediatric GI.  We are going to see Radhakrishnan, Kadakkal Ravindran. I am not sure what they have for adults but it is worth looking into. If you look on CVSA home page there is a way to ask for a list of doctors in the US that specialize in CVS. There are also a few docs at Ohio State.  All the names should be on the list. That is where I got the numbers from.

I hope this helps.

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ChrisVicky

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Quote:
Originally Posted by bspin26
Hello. My son was diagnosed at 2 with CVS.  He is 12 now.  His diagnosis came from me pushing for someone to listen to me that he did not just have a stomach virus every 2 weeks.  I kept intense records of everything he ate, when he slept and how long, activities.  We were sent to the Cleveland Clinic. There are a few doctors there who specialize in CVS. two are GI docs and one is a Neurologist. The one we are seeing is a pediatric GI.  We are going to see Radhakrishnan, Kadakkal Ravindran. I am not sure what they have for adults but it is worth looking into. If you look on CVSA home page there is a way to ask for a list of doctors in the US that specialize in CVS. There are also a few docs at Ohio State.  All the names should be on the list. That is where I got the numbers from.

I hope this helps.


Bonnie thanks so much!  We are 30 minutes from the clinic that's a much better option.

Chris

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bspin26

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Reply with quote  #4 
You are most welcome.  I had to wait a while to get in because it has been a while since we have been up there.  We seemed to have his episodes under control for years just using Zofran to abort.  Starting this past September however it has been way out of control.  He is sick for weeks at a time.  Nothing has helped and the pediatrician ran out of ideas.  He just had another endoscopy which was normal.  We see the doc up in Cleveland Feb. 2 and I asked for appointment on Dec. 9
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ginny

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Reply with quote  #5 
Dr. V is indeed the top doctor for CVS adult care in the US.  She will also consider other conditions that might be causing your sons problems.  If you can see her on Monday, I would grab that date.  She is normally booked way out, has loads of conferences that she attends.  She leads much of the research into CVS.

After you meet with her she should be able to guide you with local resources.  Overall, the one appointment or even an annual trip to WI, should be well worth the struggle.

The local doctor suggested might be reserved for a future appointment and Dr. V could have time to set up a call between her and Dr. Ravindran.

Bonnie-- if you have a minute, could you please post your doctors information on the MD forum for others to refer to?  Thank you

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wynnak

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Reply with quote  #6 
I’m going to sneak I here with a few things.. I agree that the Cleveland clinic is a good option.
Dr. V in Wisconsin, Dr. Levinthal at UPMC.. or look for others in the referral list.

I do have a question about the timing of the onset of his episodes. Did it coincide with his starting usage of MJ? Was he ever sick before tha MJ usage? Did he have any thing that seems to have set off the episodes? The further back we looked, we could trace my son’s back to infancy. So good to look at things like that.
Bonnie, Ginny is right, we have an on going list on here for doctors. There is also a link on the providers tab to sign up to be on our referral list if your doctor is interested. If you want to mention it to him.

Let us know what you decide, Chris.

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ChrisVicky

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Reply with quote  #7 
Thanks to everyone for the replies.  I am trading calls with Dr. Levinthal's appointment desk, and have a phone consult this afternoon.

Blynda, in answer to your specific questions, my son has been a casual marijuana user for about 3.5 years.   However, he just began university in Colorado, and his smoking has significantly increased.   He admitted to us that he is now smoking twice per day about four times per week.    We didn't think to really dig into this earlier because he has remained a straight A student, and has still been heavily involved in athletics, playing club soccer and basketball.  He has also admitted to using Juuls (sic?), which are a form of vape nicotine (and, to me, extraordinarily stupid, although not a trigger of CVS as far as I know).

Obviously there are a TON of different and conflicting theories about CHS vs CVS in the medical, patient, and support communities.   The GI doctor at the hospital, along with the attending Psychiatrist, are quite convinced that he has CHS, given that (1) he has recently significantly increased his marijuana use with significantly more potent marijuana, (2) he has no history of migraine issues, and no family history of migraine issues, (3) he has no history of GI issues, (4) the nausea is relieved by warm baths or showers, and (5) the combination of lozepram (Ativan) and Zophran appears most efficacious.    However,  although I would LOVE to blame this on weed, my own online research shows several contraindications to this diagnosis, so I want to consult experts to make sure we are hitting this with every resource possible.   

The good news is that we were able to bring him home from hospital after a 3 days admission period.   In the last 24 hours, he had two small bouts of the dry heaves at 5pm and 7pm last night, but nothing else.   He has switched 100% to oral Zophran and Ativan, and the symptoms have significantly abated (although not disappeared).   He drank a daily harvest smoothie 2 hours ago and seems fine, and is saying he will try soup a bit later.    If that works we will have shortened the cycle this time around by 40% (4 days vs 7 days), and think we have a treatment program that may shorten it further if we hit this in the pre-emetic phase.   Fortunately, his college is on the block system, so he can miss the next four weeks to get well and go back without missing a beat.   He has sworn off MJ and tobacco, and will spend the next four weeks working on mindfullness, diet and exercise.

I am exceptionally grateful to this website and the members, we will keep you posted with the next steps in this process, and our experiences with Dr.s Levinthal and Dr. VanKatesan.

Many thanks,

Chris

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wynnak

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Reply with quote  #8 
Chris,

First I will tell you that a good deal of information out there in cyberland and even medical studies are very wrongfully based. The latest on CHS was people that were inpatient for 10 days. A) that is not long enough to determine the cause or even the recuperation of the patients. They were not studied or followed long enough to determine anything.  I read a study that was posted a couple days ago about an abdominal blockage close to the uterus that was the "cause" of 4 people's CVS. First, that would be the blockage being a system complication that resulted in the bouts of vomiting, not CVS. It was a mis-diagnosis. I implore you to look at the time and information that those studies are based on. Not very factual. If there was a relavant study.. the amount of MJ and other factors would be very closely monitored. There are studies being done.. 

Again looking at time frame would be a good indicator. If the increase was during the up tick. As we mentioned before, there are quite a few that manage nausea, appetite and pain with very small amounts of MJ. I know of one that literally uses one inhalation then stops. 

I believe there is a correlation between CVS and CHS. Especially since the symptoms are very similar. But just like with CVS, you need to look at changes and or triggers. That is why I recommend looking at the time line. If it were as easy to get my son to stop his weeks of vomiting by stopping a type of food, or if he smoked, he would not hesitate. You may look into CBT or Cognitive Behavioral Therapy.. mindfulness if the Hospital in involved. 

I would love to hear how he does. Please let us know. 

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Blynda
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ChrisVicky

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Reply with quote  #9 
Quote:
Originally Posted by wynnak
Chris,

First I will tell you that a good deal of information out there in cyberland and even medical studies are very wrongfully based. The latest on CHS was people that were inpatient for 10 days. A) that is not long enough to determine the cause or even the recuperation of the patients. They were not studied or followed long enough to determine anything.  I read a study that was posted a couple days ago about an abdominal blockage close to the uterus that was the "cause" of 4 people's CVS. First, that would be the blockage being a system complication that resulted in the bouts of vomiting, not CVS. It was a mis-diagnosis. I implore you to look at the time and information that those studies are based on. Not very factual. If there was a relavant study.. the amount of MJ and other factors would be very closely monitored. There are studies being done.. 

Again looking at time frame would be a good indicator. If the increase was during the up tick. As we mentioned before, there are quite a few that manage nausea, appetite and pain with very small amounts of MJ. I know of one that literally uses one inhalation then stops. 

I believe there is a correlation between CVS and CHS. Especially since the symptoms are very similar. But just like with CVS, you need to look at changes and or triggers. That is why I recommend looking at the time line. If it were as easy to get my son to stop his weeks of vomiting by stopping a type of food, or if he smoked, he would not hesitate. You may look into CBT or Cognitive Behavioral Therapy.. mindfulness if the Hospital in involved. 

I would love to hear how he does. Please let us know. 


Thanks again Blynda.   At this point, we aren't dismissing anything.   We are pushing every string we can.   This syndrome did begin about 2 months after he had a significant increase in marijuana use, so MJ is out, but we are also looking at other meds and supplements.   In addition, we are taking him through the various mindfulness meditation practices that his parents already practice, and are also likely introducing cognitive behavioral therapy.   As a family, we've endured significant health crises before, so we are pretty comfortable with a "kitchen sink" approach.

I will keep you and the group updated and you and your son are in my thoughts and hopes.

Best, Chris



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ChrisVicky

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Reply with quote  #10 
Sorry, when I say "MJ is out" I don't mean we are dismissing it as a cause, I mean, he is ceasing consumption immediately.

Best, C.

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wynnak

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Reply with quote  #11 
That was how I took it. But thanks for clarifying for the group.
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bspin26

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Reply with quote  #12 
Ginny,

I am so sorry O forgot to post the doctor info. I will do that now in the post for docs treating CVS.

Again, sorry for the delay.

Bonnie

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