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wynnak

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Reply with quote  #136 
For a list of referral doctors, email the office at cvsa@cvsaonline.org. Let them know where you live and that you need an adult list. 


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Blynda
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Juliad29

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Reply with quote  #137 
Thank you so much I just emailed them! Hopefully there’s one around my area!
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wickedmystickmuzick1

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Reply with quote  #138 
I NOTICED YOU WERE PRESCRIBED DRONABINOL AKA MARINOL. HONESTLY, YOU WILL BE BETTER OFF WITH THE NATURAL PLANT THAN THE DRONABINOL. IT IS PHARMACEUTICALLY MADE, HAS NO CBD WHICH YOU NEED FOR THE NAUSEA AND VOMITING. I PERSONALLY FELT WORSE WITH DRONABINOL EVEN AT THE LOWEST POSSIBLE DOSE, I STAYED NAUSEOUS AND IT GOT ME REALLY MESSED UP. NOT PLEASANT. I WOULD SUGGEST IF WHERE YOU LIVE HAS MARIJUANA LAWS THAT YOU AT LEAST INVEST IN SOME PURE CBD TO GO WITH THE MARINOL. THAT, OR THERE ARE PLENTY OF 1:1 THC/CBD PRODUCTS AVAILABLE IN STATES/COUNTRIES WHERE IT IS LEGAL. CBD HELPS WITH THE ANXIETY, SHAKING, IT HAS SO MANY GREAT QUALITIES, WHILE IT WILL ALSO KNOCK OUT THE EUPHORIA FROM THC IF YOU TAKE ENOUGH CBD. FOR ANTI EMETIC, I USE 1:1 THC/CBD. BEGINNING DOSES CAN BE AS SMAL AS *MG, MOST I HAVE EVER NEEDED WHICH PULLED ME OUT OF CARDIAC ARREST WAS **ML OF RICK SIMPSON OIL(APPROX *** MG THC)  WITH **MG CBD.THAT IS AN EXTREME DOSAGE, IF I DIDNT HAVE THE CBD AND A TOLERANCE, IT WOULD KNOCK ME OUT FOR DAYS. ONE DROP OF RICK SIMPSON OIL, APPROX 1/2 THE SIZE OF RICE IS ENOUGH TO KNOCK OUT A HEAVY SMOKER WITHOUT CBD, BUT TOGETHER W/ CBD IN HIGH DOSES IS A PROVEN CURE FROM THE WORST CANCER, SEIZURES, PARKINSON'S, TOO MUCH TO LIST! PEOPLE REALLY NEED TO BE INFORMED OF THE BENEFITS OF PROPER CANNABIS CONSUMPTION.
P.S. PLEASE BE WARY OF CERTAIN ANTI EMETICS AS WEL AS PRACTICES BEING USED BY HOSPITALS FOR TREATING THIS! !!WARNING!!! REGLAN IS COMMONLY OFFERED FOR ANTI NAUSEA/STOMACH PAIN, BUT IS OF A FAMILY OF ANTIPSYCHOTIC DRUGS THAT ARE WEL KNOWN TO CAUSE "TARDIVE DYSKENISIA" ITS WIERD THINGS THAT HAPPEN AS A SIDE EFFECT OF THESE MEDS, IRREVERSIBLE MUSCLE TWITCHES TO THINGS SO SEVERE AS PEOPLE GETTING STUCK IN A NEARLY PARALYSED STATE WITH THEIR JAW LOCKED OPEN, ETC. DRUGS SUCH AS REGLAN, COMPAZINE ARE IN THIS CLASS OF DRUGS. I HAVE HEARD OF DOCTORS GIVING SERIOUS ANTI PSYCHOTIC MEDS TO US TO KNOCK US OUT! I RUN FROM THAT! I WAS GIVEN THORAZINE ONCE WHEN THE COMPAZINE WASNT WORKING! I HAVE NEVER FELT WORSE! I WAS SO OUT OF IT, I KEPT HAVING NIGHTMARES THAT I COULDNT WAKE FROM, THIS LASTED FOR 3 DAYS! MY HUSBAND TOK REGLAN PRESCRIBED TO HIM FOR YEARS, AND IT LEFT HIM WITH HORRIBLE SYMPTOMS LIKE CONTINUOUSLY TWISTING HIS WRISTS ALL UP TO WHERE HE'D HURT HIMSELF, OR OTHER COMPULSIVE BEHAVIOR THAT HE COULDN'T CONTROL. I USED TO BE ABLE TO TELL PSYCH PATIENTS BY THE SYMPTOMS OF THE MEDS, STICKING OUT THEIR TOUNGE CONTINUOUSLY, WIERD STUFF. THOSE MEDS ACT ON AN AREA OF THE BRAIN THAT TELLS US TO VOMIT. BUT THEY ARE ALSO IN THE SAME CLASS AS THE HEAVY ANTIPSYCHOTICS, SO BY BEST ADVICE TO ANYONE IS GET A DRUG REFERENCE MANUEL, KNOW WHAT THEY ARE GIVING YOU. I JUST TELL THEM I'M ALLERGIC TO EVERYTHING BUT ONDASTERON(ZOFRAN), BECAUSE ZOFRAN IS THE ONLY ANTI EMETIC OTHER THAN MARIJUANA THAT DOESNT GIVE ME HORRIBLE SIDE EFFECTS. WHETHER IT BE MUSCLE SPASMS AND ME WANTING TO JUMP OUT OF MY SKIN OR SEIZURES, I DONT WANT ANY OF THOSE SIDE EFFECTS EVER AGAIN! I PRAY FOR YOU, ALL I HAVE LEARNED, I TRY TO SHARE SOME, BUT I THINK THIS IS A GOOD ONE, KNOW YOUR MEDS! OH, BTW DRONABINOL HAS EVEN BEEN KNOWN TO CAUSE CHS(CANNABIS HYPEREMESIS SYNDROME),THUS WHY THE NEED FOR THE CBD TO CUT OUT THE ANXIETY AS WELL AS THE HIGH.
GOD BLESS YOU, PRAYERS SENT!

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Juliad29

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Reply with quote  #139 
Thank you so much for your advice. I didn’t know dronabinol could make it worse & thats why I wanted to look into the CBD oils to find something to better help me. What are they natural plants you think I should take besides dronabinol?. All those pills the doctored give me only help a lil but they always want to prescribe me more & I don’t like taking pills in the first place. So thank you so much for this advice! God bless!
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Symo

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Reply with quote  #140 
Hi all, I have a 13yr old son diagnosed last year with cvs and abdominal migraines. He is on sandomigran daily and b2 vitamins. He cycles every 4-5 weeks. Has improved on the meds but is in an episode now lasting 5 days. The nausea is really bad this time we are using zofran and phernagran. Is there anything else I can give him for nausea?
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ginny

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Reply with quote  #141 
I would try a search on this message board for "nausea".  Generally, some do find help with ginger, some prefer the ginger steeped as a tea.

Some have reported that Zofran has helped stop the vomiting but prolonged the nausea.  I am not sure about phergan prolonging nausea.

Has he had solid sleep?  If not, the doctor might prescribe something to help sedate him and help end the episode.  

Ater 5 days, is his hydration sufficient?  Has his doctor checked on him?







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Symo

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Reply with quote  #142 
Hi Ginny, thanks for getting back to me. He has been sleeping well and keeping hydralyte down. His cycle just broke this morning so feeling better now.

Think I'll ask his dr about trying a different med for the nausea next time.
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ginny

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Reply with quote  #143 
I never thought that the choice of antiemetic mattered much for my daughter.  She had no response at times to most but her first cycle as a small child was broken after a couple of weeks with Atarax, an antihistamine with "sleepy" properties (for most).  Various other times she had Phenergan, Compazine and Zofran with little to no improvement.  Yet zofran did help other times.  And once we stopped the cycle at home with Benadryl and pressure points.  The Benadryl put her to sleep and I was shocked that she work completely fine.  

At times in the hospital, recalling the Atarax success, I requested that med be tried. I was always turned down.  Eventually her PCP had a working formula that might no longer be typical or the best. 

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Wdgeist

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Reply with quote  #144 
Hello. I’m Wanda and my 9- year old granddaughter lleylie has been in the hospital now 12 days. She could not hold anything down -even water- until yesterday. Two days ago they put in an ng tube and she is finally getting some nutrition. She couldn’t even do the motility test because couldn’t hold it down. Yesterday they sedated her and she slept almost 24 hours. Today for the first time was finally able to hold down broth and cranberry juice. But now having bloody noses that won’t stop and they may have to take tube out. Background- say 4 she was diagnosed with leukemia and is now in remission after 3 years of chemo...but after chemo never really stopped throwing up..maybe a couple timed a week. But this is the worst and wouldn’t stop. Doctors say no obstruction and that it is probably psychological! An eating disorder. What?? It’s not like she sticking her finger down her throat . I don’t get it. I understand she has anxiety and it might be a trigger but just upping her anxiety drug doesn’t seem like a solution. Looking for answers..,,
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wynnak

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Reply with quote  #145 
Hi Wanda.
I’m so sorry that she has had such struggles. Can her doctors reach out to CVSA to consult with advisors?

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Blynda
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Wdgeist

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Reply with quote  #146 
My daughter is trying to get the doctors to give referral or consult
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ginny

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Reply with quote  #147 
This sounds awful after all she has gone through.   I am so sorry.  


When we were in the children's hospital a couple of nurses actually shamed my daughter and forced her to eat some jello and banana.  She knew she was too nauseous but being a kid, she tried to comply. I think the vomiting lasted for well over a month. 

She badly needed calories & was fed by TPN.   My child had an NG tube to relieve the pressure from the vomiting.  She also had a total blockage, diagnosed by lack of belly sounds.  She too could not succeed the barium being shot into the NG tube.  We had another condition set in, SMAS.

The sedation might be helping her more than the NG feeds. We are told that sleep resets the brain.

I have a friend who could not eat for a very long time after her leukemia treatment.  It has been around three years now and I think she is finally able to tolerate some food.  She said she thought she was hungry but had nausea and nothing was palatable.   I think it was just time that finally helped her.  No one suggested her inability to tolerate food and her nausea were psychological.



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ginny CVSA Moderator
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Wdgeist

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Reply with quote  #148 
Thank you. The good news is it looks like we are getting a referral to Lurie where there is a doctor who is supposed to be really good...and she is finally keeping some liquids down although she did throw up once today. The frustrating news is that they actually sent a DHS worker in to evaluate her mental health because they said she was refusing food. Really???? Are they blind and deaf? She’s not refusing - her body is not letting her. She wants to eat - crying because she is so hungry. But after 8 days of throwing up and dry heaving any time she swallows something and even when she doesn’t-you think she might be hesitant about trying to eat??? Makes me so angry!! Luckily the lady was very nice and understood and did not think she need a pych hospital...but not happy with the docs.
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ginny

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Reply with quote  #149 
I think many of us have experienced a bit of what you are going through.  After so many days if vomiting it is very possible her esophagus is irritated and even without nausea she would have trouble swallowing.  I am glad you have a good referral. Please keep us updated.  As Blynda suggested, maybe one of her doctors can consult with a CVSA Medical Advisor.



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wynnak

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Reply with quote  #150 
If she is being seen at LuriesI would see if the medical advisor from Cvs they can consult that is at Luries. She is a psychologist but has worked with many of our advisers on the treatment of Cvs patients.
My son was seen several times to buy psychologist every time we change hospitals are advisor at luries is the only psychologist that I know that’s aware of Cvs. I take that back there is one at the Mayo Clinic in Minnesota.
It sounds like the psychologist you worked with is on your side so that is a good thing my son was only ever told about depression which is going to happen when you have a been in school for three years. Let us know how it goes.

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