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oirish

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Posts: 11
Reply with quote  #1 
just wondering if anyone else has done the thorizine/ Haldol mix with the bendryl Zofran iv in  the ER and had a reaction.  IT stopped the vomiting however my son could not stop pacing increased anxiety could not sleep crawling out of his skin.  We meet with the head of er so he would not think we were drug seekers and reviewed his protocol from his dr. which is Ativan, Duiluad, Zofran however they are refusing to give any drugs along this line.  Even when I asked if they could give him Ativan since I could see the pacing starting in the ER they refused. so home he went to be walking the road all night.  I am the CVS mom of a 28 year old suffer.  It is killing me to see what cvs is doing to my son.  Anybody else have these side effects to the above mentioned medication.  Wish we could be at the conference guess we will have to get the video.  Sending hugs to all the CVS sufferers and hugs to all the caregivers who would give anything to help them.  
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Jay

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Reply with quote  #2 

i absolutely will not take bendryl because it does that.  Next time just have him refuse the benny because of "adverse side effects"

I would also encourage you to get a GI with hospital privilege because then they actually WILL use his treatment plan.

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oirish

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Reply with quote  #3 
Jay thank you for your response.  His GI doctor is in NY city we live in the Kingston ny area does anyone know of any good GI doctors in upstate NY.  Also ever time we go to ER they tell us they treat 15 people with CVS.  Each time I ask for a doctors name in upstate area that these people go to they have now answere.  So I am putting it out there if anyone in the upstate NY area would like to start a support group please contact me on this message board.  My son so wanted to go to conference however as we all are in the same boat just trying to stay afloat not possible this year.  So jay thank you for reaching out.  Will try to find a GI doctor that wants to care and listen.  Also they would not give him Ativan .  THanks
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ginny

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Reply with quote  #4 
Ithaca is a distance for you but while at Cornell my daughter had great luck with Steve Rogers.  I pulled info from the web site and while I do not know Dr. West, there is hope that if he is affiliated with Dr. Rogers, maybe he is familiar with CVS.  When I first called Dr. Rogers office, on the suggestion of our pedi GI at Boston Childrens, the office had no knowledge of CVS.  A couple of years later the office had several CVS patients.  Former MB moderator Pattie Mahler lives near Ithaca and reports that Cayuga Medical Center is doing a good job with CVS patients.

Dr. Rogers might be worth the trip.  I do not know where Montour Falls is located.  

Ithaca Office:

Gastroenterology Associates of Ithaca

2435 North Triphammer Road 

Ithaca, NY 14850

(607)272-5011

Schuyler Office Dr. West:

Dr West sees patients at the former September Hills Center

250 Steuben Street

Montour Falls, New York

(607)535-6286-Dr. West

 

Cayuga Medical Center: 274-4192

 

 


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ginny CVSA Moderator
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oirish

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Reply with quote  #5 
Ginny thank you for the names of doctors they are about 6 hours from us however I will call both on Monday and see if they know of any doctors in Albany ny or closer who treat CVS.  Thank you for taking the time to answerer if I find anything out on Monday I will let you know.  Thanks oirish 
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oirish

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Reply with quote  #6 
  Dear shailahJade
   Sorry to hear about your experience with Haldol.  I emailed his dr. in NYC and he recommended that we stick with the protocol that has worked for him.  The problem as so many of you know because it is Ativan and dilauid  He has no narcotics at home the only time us them is in the ER we are well aware of too much narcotics.  His attacks come on fast and he can not hold down even under tongue Zofran.  Well we will continue to try to march forward.  Thank you for listening and I hope today is ok for you.
                                                                             oirish      
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Angela1982

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Reply with quote  #7 
so tired of being classified as drug seekers. I had a ER doctor ask me if I was there to get drugs. I said...yes I am.I said I'm in excruciating pain and I need some relief. who would go to an ER and wait in an uncomfortable ER for hours vomiting /dry heaving in a bucket for the dr. to do nothing! I can't believe how we are treated. I do not have narcotics at home...I only go to the hospital when an episode is so severe and then yes I WANT AND NEED NARCOTICS. I really hate how physicians /medical staff treat you. I have had many times when I have gone to ER and left still very sick. They give me zofran and morphine or toradol and then discharge me. of course this doesn't work. It flabbergasts me when they say they can't do anything else. we literally knock ppl. out and do organ transplants, but you can't help my severe nausea,vomiting and pain??? Absolutely not true! ! I really hate having this disease.
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ginny

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Reply with quote  #8 

Angela1982, I am genuinely sorry about your mistreatment at the ER.  There are lots of posts with suggestions on the ER, in particular setting up a meeting when you are not ill, and getting your own MD involved.  

Otherwise, the ER treatment is totally subject to the treating doctors opinion.  CVSA is working on an Adult treatment protocol and is hopeful that once published, the ERs all across the country and elsewhere will respect the findings of the study and adhere to them.

When new magazine and newspaper articles are publish such as the one Wynnak refers to in the "Atlantic" related CVS to Marijuana use, and linking the Cannabis Hyperemesis with CVS, saying they are one and the same, we get set back on treatment.  If we can respond to these harmful pseudo scientific articles, we might begin to bring understanding and hopefully prevent further damage to understanding CVS.

I doubt there is a single baby, toddler, preschooler, grade school-er who is vomiting from Cannabis recreational usage.  Yet these publications persist.


Please join us in sending messages of concern and demanding correction to those who persist in publishing false medical information about CVS.


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ginny CVSA Moderator
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MannionUSMC

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Reply with quote  #9 
The narcs, zofran, benydryl (I take it) and fluids are all that works for me.  I tried taking thorzine and got attacks every week.  If they give me haldol or visteral I seem to have a seizure about 90% of the time and the times I didn't just seize I felt horrible.  When I get all my meds in the hospital correctly I have to walk the energy out (I am usually unable to move).  I think it is partly the mito working a little more then they normally do maybe.  Or like trying over and over to turn over like a car engine so you just never get out of that initial energy stage.  RNs are always amazed I stay up my entire hospital stay.  I never considered it was benydryl. 
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ginny

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Reply with quote  #10 

For me, any narcotic hypes me up.  I am long past the ability to run but I have the strongest craving to go running.  I don't sleep or sleep very little on narcotics.  I become extroverted. i don't shut up.  I am annoyed by me.
If Benadryl helps you, have you been able to try Atarax?  That is the antihistamine that stopped my daughters first long term episode when she was 5.  No one would give it to her again since but it was the single medication tried after a couple of weeks of intense vomiting.  


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ginny CVSA Moderator
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