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Below are the 6 most recent journal entries recorded in cvs_support's LiveJournal:

Saturday, January 24th, 2004
4:58 pm
[kianamalele]
CVSA website UPDATE info
We've added a couple of new pages to our website as we continue to develop it.
You might be interested in the following topics:
http://www.cvsaonline.org/dietcvs.htm
http://www.cvsaonline.org/diaryepisodereport.htm
http://www.cvsaonline.org/copingwcvs.htm

Diane Babbitt
4:57 pm
[kianamalele]
Pure Frustration!!
I just have to share my frustration and ask if anyone knows of a doctor in the Seattle area that has actually treated CVS.
So heres how it went today. I have suffered with this for almost 9yrs now. I have a dr that sent me to a gastro. inter. to have the scope test done AGAIN. The specialist tells me CVS and hands me information. This is how i found this site. Well that was 3 weeks ago,, so I go to my reg MD today to discuss treatment in the future. He has not a clue what CVS is. and he has NOT done his homework for my meeting today. I am appalled and discussded. I paid to see a dr who knows nothing and didnt even investigate for the last 3 weeks at all. Well, of course I had to tell him how dissappointed and disturbed I am that he just takes my money and has done nothing to find out about what HE sent me to a specialist for. Dont dr's followup on their patients any more???? Does anyone know of a Dr in the Seattle area that has treated CVS or has knowledge of it???? I would really appreciate the help anyone can offer as far as Drs in the area. Thanks for any help you may have to offer, Prays, health and luck to all!!!! Linda
4:53 pm
[kianamalele]
Wow! They finally have a name for this!!
I was diagnosed with "abdominal epilepsy" at the of 4 yrs by a wonderful neurologist. I really think he was a pioneer for this condition at the time. I had so many tests, upper GIs, etc. that I think my parents were going to lose their minds.

It started when I was very young (2-3yrs). I would wake up usually around 1:30am (but occasionally around 6 am) shaking and nauseous. My mother says that I was a corpse color gray. She would get me to the bathroom and I would proceed to vomit for about 15 minutes. I would then get real tired and go back to sleep. This would happen up to 3 or 4 times in one night and up to 2 times a week. When I would wake up, everything would be fine.

I missed lots of school. Dilantin and Misolin (sp?) helped a lot. My EEG was normal at 10 yrs old with no more symptoms. I never passed out or seizured.

Even now I have waves of this out of no where. what do you do as an adult? Stress almost always brings this on for me.

Sharon
4:52 pm
[kianamalele]
The Puke Monster
Something my son and I do that helps him understand the puke monster (actually inspired completely by my son)

1. Go rent Osmosis Jones the movie. (there are also cartoons on Saturday morning)

2. Explain that the virus is like the puke monster, the only difference is viruses can kill you and puke monster can't as long as you have the straw in the arm (IV) that gives you a drink.

3. Explain that the puke monster tries to go to the brain and tip the Vomit cup (seritonin) which when it is tipped spills (Slime) seritonin everywhere and the tipped cup hits the vomit button, then all the alarms in the body go off. The Zofran ODT tablet are the first solders to go get the cup to stop swinging and start to refill the slime (seritonin). Then they guard the cup so the puke monster can not do it again. If that does not stop the vomiting, then we must send torpedoes up the butt that will go in and find the puke monster (like patriot missles, but really phernergan suppositories). If that can not get him explain the puke monster is being tricky and hiding so next comes the green baret in through the IV (When the IV zofran or Pherergan stings) explain it stings because they are so powerful they will go get the puke monster.

We also now have Periactin. It tastes awful but it does because it is food for the solders that keep the puke monster in jail. The puke monster hates the taste and so not only do these solders eat it for food but they also spread it on the bars of the jail. Once he is injured he must sit in Jail in the human body. Unfortunately he does not die. We hope one day to find a medicine that might kill him forever, but right now there is none gentle enough for the human body that could still kill the puke monster.

Now you may not have the same medicines that we do but you can replace our medicines with the ones you use. Change it around a little. Soon your child can come to grips that this may happen again but not to worry, mom and the doctors will help you fight the puke monster. He may be tricky but we always win sometimes it just takes longer to get him into Jail. Always remember as long as the solders are there to help us fight the puke monster (they are with the help of the doctors and hospitals). He will never Win! Share with your son the number of hospitals just in your city.




__________________
Ginny, CVSA Message Board Moderator

Current Mood: amused
4:47 pm
[kianamalele]
Posts from our CVSA Message Board
Here I will post helpful tips and stories from our CVSA Message Boards. If there is anyone out there that is interested in helping support the CVSA (Cyclic Vomiting Syndrome Assocaition)Please contact me and I will send instruction on how to get a hold of Debra Waites our Excecutive Director. CVSA is continually looking for volunteers and generous donations. CVSA is a non profit organization. With that said....

Welcome to our WORLD.... THE WORLD OF HORRIBLE BOUTS OF VOMITING....

Current Mood: grateful
Monday, January 19th, 2004
4:53 pm
[kianamalele]
INFORMATION PEOPLE!!!
This community was created to inform people of CVS and it's symptoms, and episodes. Also, to act as a support group for those that do have the disease and spend a lot of their time in misery! For those that don't know about CVS please get educated. You may never know what friend or relative that you may run into that may have some or all of CVS's symptoms!

Thanks all and welcome!

In cyclic vomiting syndrome (CVS), people experience bouts or cycles of severe nausea and vomiting that last for hours or even days and alternate with longer periods of no symptoms. CVS occurs mostly in children, but the disorder can affect adults, too.

CVS has no known cause. Each episode is similar to the previous ones. The episodes tend to start at about the same time of day, last the same length of time, and present the same symptoms at the same level of intensity. Although CVS can begin at any age in children and adults, it usually starts between the ages of 3 and 7. In adults, episodes tend to occur less often than they do in children, but they last longer. Furthermore, the events or situations that trigger episodes in adults cannot always be pinpointed as easily as they can in children.

Episodes can be so severe that a person may have to stay in bed for days, unable to go to school or work. No one knows for sure how many people have CVS, but medical researchers believe that more people may have the disorder than is commonly thought (as many as 1 in 50 children in one study). Because other more common diseases and disorders also cause cycles of vomiting, many people with CVS are initially misdiagnosed until the other disorders can be ruled out. What is known is that CVS can be disruptive and frightening not just to people who have it, but to the entire family as well.
CVS has four phases:

prodrome


episode


recovery


symptom-free interval


The prodrome phase signals that an episode of nausea and vomiting is about to begin. This phase, which is often marked by abdominal pain, can last from just a few minutes to several hours. Sometimes taking medicine early in the prodrome phase can stop an episode in progress. However, sometimes there is no warning: A person may simply wake up in the morning and begin vomiting.

The episode phase consists of nausea and vomiting; inability to eat, drink, or take medicines without vomiting; paleness; drowsiness; and exhaustion.

The recovery phase begins when the nausea and vomiting stop. Healthy color, appetite, and energy return.

The symptom-free interval phase is the period between episodes when no symptoms are present.

Triggers
Most people can identify a specific condition or event that triggered an episode. The most common trigger is an infection. Another, often found in children, is emotional stress or excitement, often from a birthday or vacation, for example. Colds, allergies, sinus problems, and the flu can also set off episodes in some people.

Other reported triggers include eating certain foods (such as chocolate or cheese), eating too much, or eating just before going to bed. Hot weather, physical exhaustion, menstruation, and motion sickness can also trigger episodes.

Symptoms
The main symptoms of CVS are severe vomiting, nausea, and retching (gagging). Episodes usually begin at night or first thing in the morning and may include vomiting or retching up to five or six times an hour during the worst of the episode. Episodes usually last anywhere from 1 to 4 days, though they can last for up to 10 days.

Other symptoms include pallor, exhaustion, and listlessness. Sometimes the nausea and vomiting are so severe that a person appears to be almost unconscious. Sensitivity to light, headache, fever, dizziness, diarrhea, and abdominal pain may also accompany an episode.

In addition, the vomiting may cause drooling and excessive thirst. Drinking water usually leads to more vomiting, though the water can dilute the acid in the vomit, making the episode a little less painful. Continuous vomiting can lead to dehydration, which means that the body has lost excessive water and salts.

Diagnosis
CVS is hard to diagnose because no clear tests--such as a blood test or x ray--exist to identify it. A doctor must diagnose CVS by looking at symptoms and medical history and by excluding more common diseases or disorders that can also cause nausea and vomiting. Also, diagnosis takes time because doctors need to identify a pattern or cycle to the vomiting.

CVS and Migraine
The relationship between migraine and CVS is still unclear, but medical researchers believe that the two are related. First, migraine headaches, which cause severe pain in the head; abdominal migraine, which causes stomach pain; and CVS are all marked by severe symptoms that start quickly and end abruptly, followed by longer periods without pain or other symptoms.

Second, many of the situations that trigger CVS also trigger migraines. Those triggers include stress and excitement.

Third, research has shown that many children with CVS either have a family history of migraine or develop migraines as they grow older.

Because of the similarities between migraine and CVS, doctors treat some people with severe CVS with drugs that are also used for migraine headaches. The drugs are designed to prevent episodes, reduce their frequency, or lessen their severity.

Treatment
CVS cannot be cured. Treatment varies, but people with CVS are generally advised to get plenty of rest; sleep; and take medications that prevent a vomiting episode, stop or alleviate one that has already started, or relieve other symptoms.

Once a vomiting episode begins, treatment is supportive. It helps to stay in bed and sleep in a dark, quiet room. Severe nausea and vomiting may require hospitalization and intravenous fluids to prevent dehydration. Sedatives may help if the nausea continues.

Sometimes, during the prodrome phase, it is possible to stop an episode from happening altogether. For example, people who feel abdominal pain before an episode can ask their doctor about taking ibuprofen (Advil, Motrin) to try to stop it. Other medications that may be helpful are ranitidine (Zantac) or omeprazole (Prilosec), which help calm the stomach by lowering the amount of acid it makes.

During the recovery phase, drinking water and replacing lost electrolytes are very important. Electrolytes are salts that the body needs to function well and stay healthy. Symptoms during the recovery phase can vary: Some people find that their appetites return to normal immediately, while others need to begin by drinking clear liquids and then move slowly to solid food.

People whose episodes are frequent and long-lasting may be treated during the symptom-free intervals in an effort to prevent or ease future episodes. Medications that help people with migraine headaches--propranolol, cyproheptadine, and amitriptyline--are sometimes used during this phase, but they do not work for everyone. Taking the medicine daily for 1 to 2 months may be necessary to see if it helps.

In addition, the symptom-free phase is a good time to eliminate anything known to trigger an episode. For example, if episodes are brought on by stress or excitement, this period is the time to find ways to reduce stress and stay calm. If sinus problems or allergies cause episodes, those conditions should be treated.
Complications
The severe vomiting that defines CVS is a risk factor for several complications:

Dehydration. Vomiting causes the body to lose water quickly.


Electrolyte imbalance. Vomiting also causes the body to lose the important salts it needs to keep working properly.


Peptic esophagitis. The esophagus (the tube that connects the mouth to the stomach) becomes injured from the stomach acid that comes up with the vomit.


Hematemesis. The esophagus becomes irritated and bleeds, so blood mixes with the vomit.


Mallory-Weiss tear. The lower end of the esophagus may tear open or the stomach may bruise from vomiting or retching.


Tooth decay. The acid in the vomit can hurt the teeth by corroding the tooth enamel.
Points to Remember
People with CVS have severe nausea and vomiting that come in cycles.


CVS occurs mostly in children, but adults can have it, too.


CVS has four phases: prodrome, episode, recovery, and symptom-free interval.


Most people can identify a condition or event that triggers an episode of nausea and vomiting. Infections and emotional stress are two common triggers.


The main symptoms of CVS are severe vomiting, nausea, and retching. Other symptoms include pallor and exhaustion.


The only way a doctor can diagnose CVS is by looking at symptoms and medical history to rule out any other possible causes for the nausea and vomiting. Then the doctor must identify a pattern or cycle to the symptoms.


CVS has no cure. Treatment varies by person, but people with CVS generally need to get plenty of rest and sleep. They may also be given drugs that may prevent an episode, stop one in progress, speed up recovery, or relieve symptoms.


Complications include dehydration, loss of electrolytes, peptic esophagitis, hematemesis, Mallory-Weiss tear, and tooth decay.
Points to Remember
People with CVS have severe nausea and vomiting that come in cycles.


CVS occurs mostly in children, but adults can have it, too.


CVS has four phases: prodrome, episode, recovery, and symptom-free interval.


Most people can identify a condition or event that triggers an episode of nausea and vomiting. Infections and emotional stress are two common triggers.


The main symptoms of CVS are severe vomiting, nausea, and retching. Other symptoms include pallor and exhaustion.


The only way a doctor can diagnose CVS is by looking at symptoms and medical history to rule out any other possible causes for the nausea and vomiting. Then the doctor must identify a pattern or cycle to the symptoms.


CVS has no cure. Treatment varies by person, but people with CVS generally need to get plenty of rest and sleep. They may also be given drugs that may prevent an episode, stop one in progress, speed up recovery, or relieve symptoms.


Complications include dehydration, loss of electrolytes, peptic esophagitis, hematemesis, Mallory-Weiss tear, and tooth decay.
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