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island1

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Reply with quote  #16 
My son's 7-day cycle started back up on Thursday so we are doing our best to help him to get through it. He had to stay at home on Thursday and Friday. I am thankful that his last week of school is coming up so he will be able to rest when he has a tough night. I am just grateful that he will be able to finish up the 8th grade and start High School in the Fall. A couple more tests and exams next week plus they go to a waterpark too so he is really looking forward to meeting up with his friends. I am really happy that he is using his medical hypnosis techniques to stay calm through it all.
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wynnak

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Reply with quote  #17 
I hope he is able to go too. Great that he found techniques that help.

Welcome

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Blynda
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trish

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Reply with quote  #18 
Hi, my name is Trish. I'm the mother if a 19 year old daughter with CVS, Caitlyn. I found this site several months ago and it has helped so much already. Not just for the information it's provided us but for the support and encouragement its brought us. I'm very excited to have found this community and look forward to participating! PS I'm new to chat forums so I hope I'm doing this right, lol
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Tisha Villanueva
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wynnak

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Reply with quote  #19 
Hi Trish! I'm so glad that you have joined us! I really feel that without this message board I would have lost my wits during our rough times. My son is 19 as well and he is the one with CVS. Absolutely, post a question in a new topic, if you have them. The archives are amazing as you have most likely found. We look forward to you joining our conversations!
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TheLorax

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Reply with quote  #20 
Hey Trish, welcome to the board! 

Update on my son, he doesn't have any common food allergies based on the panel we did.  He also doesn't have Celiac.  Hopefully the Endoscopy on Monday will provide some information. :/ 

Hanging in there. 

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island1

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Reply with quote  #21 
Hi Trish,

Welcome! So glad that you joined! This is a wonderful supportive group. The archives have great information!

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Mizmoz

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Reply with quote  #22 
Hello Im Moz and mummy to an adult daughter 24 with CVS.  Today is day 10 and still vomiting every 3-5 hours.  Throughout the last 10 days we have had intravenous drips for rehydration  and injections for vomiting and even for chemo.  Yet still no relief.  The cycle May 16th of last year 2016 just over a year ago, prior to that it was Oct of 2015 going back till when it started in her 17 year.  Prior she always suffered migraines and lighting sensitivity.

I have kept her on electrolytes, lucosade (a glucose drink) water ice blocks, water, coke, probiotics, and today trying some chicken broth to get some substance even if she vomits.

Am I doing the right thing, anyone know from day 10 what to do??  Heart broken cant help her.  Im massaging her feet, pressure points on arms, anything else I can do to break the vomit.

I just joined and think this is in the USA?  Am I correct?


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ginny

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Reply with quote  #23 

This is the USA/Canada CVSA.  The web page for CVSA has the list of support groups for CVS in various countries.  Years ago some from your country posted on where they were getting their medical care.  

After ten days, I would hope your daughters doctor might admit her so she can be sedated and sleep heavily.  Sleep is said to reset the brain.

Once a year cycles are probably unusual but if she has a migraine component, maybe some of the migraine medications would help?  Magnesium is said to help migraine as well but you need to be careful of the form of magnesium as it can have laxative side effects.

Will the doctor admit her?  For us, the most beneficial treatment was inpatient.  My daughter was tested, sedated, and often would wake up completely well.  Her meds included an antiemetic, thorazine, an anti anxiety med (often has anti emetic properties as well), hydration and probably more.  The Empiric Guidelines (on the web page, please print and read) states the reasons for the various meds, prevention suggestions, prodromal treatment, testing and tests best run during a cycle.

We also had a couple of what seemed to be totally classic incidents of CVS but actually were symptoms of a serious condition including a liver illness.  Be sure your daughter has testing -- not every episode that looks like an episode is actually CVS.  Many conditions mimic each other.

Please let us know how she is doing.


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ginny CVSA Moderator
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Mizmoz

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Reply with quote  #24 
Thank you ginny for your response,

I have been taking her in every second day for fluid drip to rehydrate her.  The 3rd visit, she was in agony, I ask if he would sedate her, he blatantly refuse, saying he would never do that and that it is a high risk.  He was not the nicest doctor we have seen, so after rehydration, of 6 HOURS, I then take her to our GP and get a jab for vomiting and prescription for diazapan to sedate her. Our GP she is wonderful and understanding. 

I got into her tonight after the last vomit today at 11.30am 7 teaspoons of chicken broth and 2 electrolite icepoles.  So far she has kept that down.  We may be on the way back up, if her anxiety can be calmed. So I have also been getting her to listen to hypnosis video's on you tube for relaxation, stress and anxiety, after reading Island1 and her son doing hypnosis techniques.  It put her to sleep for 3.15 hours.  She is now awake again.

Medication she is taking,

Buscopan - to stop spasms of the stomach

Diazepam - to help her sleep - *mg - only sleeps for 1-2 hours every 4-5hours.

APOMETOCLOPRAMIDE - hydrochloride - for vomiting.

Is 10 days too long?  


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wynnak

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Reply with quote  #25 
My son's last for weeks. Your getting her in for hydration, which is important.. very. With what you said she kept in last night.. that would be enough to sustain my son. He was sick for months a couple times. It's good to be cautious and learn when she needs hydration. We had the same struggles to sedate my son. But he would sleep 18-20 hours at a time when he was at his worst. I hope last night was a turning point for you guys. Keep us posted.
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TheLorax

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Reply with quote  #26 
Mizmoz, I hope you are able to get some relief for your daughter.

Update on my son, he had his endoscopy on Monday and they didn't find anything really. A little minor irritation of the lower stomach. The biopsy results showed he didn't have celiac and that his lower esophagus was a little irritated which is due to him regurgitating food every day.

We have a couple of other appointments coming up including an appointment with an ENT in the next couple of weeks but I am also going to look at a hypno therapist in the next town to see if he can help. 

I'm also considering acupuncture as someone suggested that to me and there is one a few blocks from our house.  We're over 2 months with this latest bout now.  Thankfully he doesn't actually vomit and isn't too irritated by it most of the day.  He can actually go for a walk with me once in a while.

I'm still hanging in there.  I'm sure one of these days we'll figure it out.

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ginny

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Reply with quote  #27 

Mizmoz, I think you are doing all you can do for now.  The 3+ hours of sleep might have helped to break the cycle.  My daughter asked for foot massage and once we were able to use pressure points (the fleshy area between thumb and forefinger, firm pressure ten minutes at a time) and Benadryl.  That is the only time I can recall this working but her sleep was deep and she woke well.

For us, dehydration sets in on the first day and a hospital admission was required for almost all cycles.  I think it was the sedation that worked, more than the anti vomiting meds.

One of our former MB members, KLConner, would be direct admitted to ICU during her cycles.  The ICU could monitor the heavy drugs required to break her cycle.  Her posts remain in the MB archives.

Keep us updated,  hopefully the cycle was broken.

For acupuncture, we never tried but I did speak to our local acupuncturist and he was interesting explaining how he would check the tongue to see which part of the body was involved in CVS.  This is back when we thought it was a stomach problem so I was surprised when he said it might have noting at all to do with the digestive system.  Maybe it would  have helped.


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ginny CVSA Moderator
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wynnak

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Reply with quote  #28 
TheLorax,

It is common to not find anything in the scopes for CVS patients. Fingers crossed for the ENT.

A couple people have had oaky results with hypnotherapy. There are also meditation apps that people are having success with.

My son tried Laser acupuncture, but he said it did nothing for him.

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Jpbooth1

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Reply with quote  #29 
1st post. 20 year sufferer. Diagnosed by Dr. F. About 18 years ago after my GI wanted to remove my Gall Bladder. I still have it, my gall bladder. :-)

I started out very bad, with a series of repeats every other day. It was life threatening. Since then, I've learned to control my triggers, except stress. I used to have IBS, but with careful diet that is gone. I am 100% lactose intolerant. That and IBS were common triggers. My episodes are about every 45 days now. The interval changes sometimes to 30 days. I once went about 1.5 years with no episodes.

Now I am medication free, now that I have tried everything and accomplished the best I can be, that is enough. I found that the episodes were no better or worse without meds. I never could get a Dr. to prescribe anything stronger than Ativan. Over the course of the 1st 3 years, I ran through all of the prophylactic drug protocols with Dr. Fleischer; none of the treatments worked. Getting to an ER is impossible unless it is imminently life-threatening. Any light, motion, speaking, makes it more violent and painful.

I'm not shy, it's better than the pain.....Guzzle/Induce - 50/50 Gatorade and water to keep up my electrolytes, by the pitcher, tons of ice. Huge straw.
Hot showers in early stages, hot bath near end when exhaustion kicks in. Usually pass-out in tub near the end. LOTS of large dry towels. Water as hot as I can stand it. 12 hours is normal, 18 hours is unusual. Keep room at 80+ degrees to stop cold sweats and uncontrollable shaking.

Like any bad experience, I ride it out. I know the tune, I know the dance. I Stay tough.
It has come close to breaking my spirit several times in 20 years. My wife is my rock.

My wedding day, and any time we travel... so...... Amsterdam, Rome, Chicago, NY, Boston, New Orleans, Dallas are just a few of the cities where I have had episodes that nearly got us thrown out of the hotel.

I have no idea how the CVS kids do it...... Never give up, never surrender.
God Please Bless those that provide comfort to us during our darkest hours, and enlighten those that are clueless.




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John
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ginny

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Reply with quote  #30 
Thanks John.  This is an incredible journal. I hope you end these cycles and if not, I admit your perseverance.  The adult treatment study is underway and I am hoping that something positive regarding treatment comes out of the findings.  If nothing else, ER treatment should improve.
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ginny CVSA Moderator
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