Stacey, I believe that was the Mom’s name, called in about her daughter having vomitting spells. From the time I was tiny, til I was 16 I had awful vomitting spells. I could not tolerate anything but a bland diet.. no acid or rough foods.I grew up on baby food,bananas, milk.. I went thru tons of medical tests all thru my childhood. There were no findings and my parents were told I was “high strung’.
I became very ill in my teens years… and decided to find a diagnosis myself. I found a little back woods doctor that did everything by medical journals. He researched, looked at my records, contacted me a week later. He suspected and diagnosised me with gallstones of all things.
I had never had an upper GI to explore this.. one was perscribed and it was found my entire gallbladder was one large stone. My gallbladder was removed, along with reconstructive surgery and I have been fine ever since. My case was written up in the Medical Journal, as my history was one of the youngest "gallstone” cases reported.
so… please insist on an upper GI….just to cover the bases.

and good luck

Stacey,

Hello.  My son, Chris (now 18) had “violent vomiting” episodes at age 4.  He went thru many procedures to find the cause including a stomach biopsy for food allergies.  We even had a doctor tell us he was making himself “violent vomit” & maybe he needed psychiatric help.  His symptoms subsided with a short hospital stay & we continued to live life large.

Later, when Chris was 6 he underwent an MRI for scoliosis & we finally found out the reason for the “violent vomiting” episodes.  Chris had hydrocephalus.  He had a brain stem tumor that was compressing the spinal fluid to his brain, thus causing “violent vomiting” episodes.  Chris is fine now!  We are blessed that he is okay.

I am not telling you this to scare you, only to encourage you to pursue answers for your daughters’ vomiting.  Vomiting can be allergies, but it can also be something you least expect.

Good luck & God bless!

Sheri from Indiana

I suffered with violent continuous vomiting episodes for many years throughout my childhood from about age 8-17. I vomited so much that I had to get hospitalized for a week each time. I went through every possible medical test you can think of. I finally had a doctor diagnose me at the age of 16 with “abdominal migranes” (similar to what they mentioned on the show but they called it by another term). My diagnosis was more a process of elimination when they couldn’t anything else. I received some medications and never suffered from it again after the age 17. I’m now 31.

Stacey ~

I completely disagree when they told you most likely it could not be seizures. Without more info, it’s not something that should be ruled out. My son had repeated vomiting starting as a toddler, and we went to doctor after doctor. He was checked out for many things, subjected to blood tests and xrays, I kept a food log, he even went to counseling in case it was an emotional issue. It turns out he was having complex partial seizures, and it took until he was 7 years old (almost 5 years!!) before being properly diagnosed.

I’m not saying I think your child is having seizures, but I don’t think that it should be excluded from the possibilities. For my son, the signs were so subtle and difficult to recognize as being related to seizures. The vomiting was the only thing that I noticed and was what prompted me to keep getting him looked at.

Good luck!!

I was a cronic vomiting young child too. She needs to have the doctor check the child for gallbladder issues. My case started when I was a couple of years old too. My issue was with the time of day that I had anything to eat…even dry toast would set me off. I could not eat a thing after 6PM otherwise I would vomit the entire night thru, there were no before bedtime snacks for me. I can remember my mom being up all night with me because of the vomiting. Fast forward until I was 21 years old and out of the blue, I developed cronic indigestion even from drinking water. I suffered with cronic indigestion for 5 years until I was 26 when I had this attack that was like a heart attack that occurred about 30 minutes after eating a salad at lunchtime. I had an abdominal ultrasound & upper GI tests done & the ultrasound showed a small gallstone. I had laproscopic gallbladder surgery about a month after the stone was found. What the ultrasound didn’t show was way worse than any stone. When the surgeon removed the gallbladder, he examined the stone & gallbladder themselves. The entire inside of the gallbladder was black (rotting from the inside out). He called the stone “an enzyme stone” not the traditional big ugly yellowish green gallstones that most people get either. My stone was black & hard as concrete and pebble small. The doctor came right out and said that the gallbladder was so diseased that it was his professional opinion that that could have been my vomiting problem when I was a child. He said that the gallbladder was probably going bad from the time I was a child & it just took 20+ years for it to get really bad enough to cause the cronic indigestion. He also said that it was a blessing that the stone developed otherwise they would have never known the gallbladder itself was rotting from the inside out. The doctor came right out and said that I could have eventually gotten worse and caused problems for my liver & surrounding organs.

I wish Stacey & her daughter all the best and for a positive outcome on her situation.

Good Luck!!!

Stacey,

I guess what we are all saying is be an advocate for your daughter. I have found that doctors do alot of educated guessing.. for diagnosis. Give them every symptom that you can think of.. history of what she is eating…when it happens. Sleep habits the night before. Is she over active prior to the episode, or lethargic. Anything you observe that seems like it MIGHT be relevant, or the silliest thing you have heard. Write it all down. And if at all possible.. get her to the doctor when she is going to have an episode. Then, find a doctor that is willing to listen to you. Tell them you want to leave no stone unturned..because YOU know something is not right. It is alot of work… but oh so worth it!
Keep us updated.!

My son is 27 years old and has CVS! When he was a child he would suffer from migranes and episodes of unexplained vomiting that would knock him to his knees. When he was not having episodes he was full of energy and you would never guess that anything was wrong. Eventually we figured out some of his triggers and he avoided those! When he was 20 years old and in college he began vomiting uncontrollably for days on end. We were given many diagnosis including the flu, gall bladder, appendix, college binge drinking, drugs?, just wanted attention, acid reflux, diabetes, gastroparesis etc…….. Many tests were performed and many exploratories and nothing was ever found! 2 1/2 years later he finally received the diagnosis of CVS and his life improved somewhat but he still deals with CVS on a daily basis and sometimes for a week or two at at time he vomits. This little known disease has and does affect babies, children and adults of all ages, races and walks of life. Food allergies can be part of it, along with additives such as msg’s! They are doing research on the mitochondrial but it is a slow process for those researchers because it gets little funding and so few doctors are able to correctly diagnosis this disease that many go untreated or treated incorrectly for years. There are specialist who are like saints to these patients because they are the life line that they were looking for. Hope is out there for all CVS patients and their caregivers. Thank you to the doctors show for bringing it front and center. Would you be interested in doing and episode on CVS? Please help bring this disease front and center and bring a cure and end to CVS forever!

I am a 43 year old Cyclic Vomiting Syndrome patient. I first presented with symptoms in 1990, but was not diagnosed until 2005. Before CVS, I was an active young person, a new teacher, a coach for special olympics, and active volunteer in my community. Because CVS is not well known, I was often brushed aside by the medical community and was labeled a hypochondriac and drug seeker. I attended chronic pain programs, had just about every GI and Neuro test you can imagine, and was even admitted to a psych ward for a week. I left that experience on medications for bi-polar disorder and psychosis. By 1999 I was so sick I had to stop working. For a peroid of 6 years I was spending 80 days or more in the hospital because the vomiting and dehydration were so bad. I want people to understand I have no ill feelings toward the treatment I recieved back then. You can’t fault someone for not knowing things they haven’t been taught.

In January 2005 I finally found a physician who specializes in motility. He tapered me off the unnessary medications I was taking and started me on daily prophylacitc medication. Four years later my episodes have spread 6 to 8 months apart. I also have a plan that stops episodes when they do happen. I have had only 2 breif hosptial stays in the last year.

Cyclic vomiting syndrome is very real. I will do anything I can if it will prevent others from experiencing the 14 years of not knowing, or being made to think the vomiting is “all in your head” that I went through. Educating both the medical community and theh public is the key to finally getting rid of the “Puke Monster”. Thank you so much for starting the conversation.
kate

Hi I am the mother of the chronic vomiting toddler, And I want to thankyou all of you for you input on my daughter Julia, I am going to have her tested for seizures, and look into adominal migraines, I am also going to pursue this until we get a diagnoses and she is better, It is a long wait when you can’t even get into a specialist for a few months, it is so frustrating, but I will keep everyone posted on the outcome, and once again thankyou so much your input has helped me so much on what to do next, thankyou Stacey mom of chronic vomiting toddler.

Stacey, Cyclic Vomiting Syndrome is a very real diagnosis. However, it remains a diagnosis of exclusion; meaning there is no single test that can rule it in. This process can be both daunting and frustrating. In many cases it is similar to abdominal migraines. Journaling these episodes can provide valuable information, it helps to figure out if there is anything triggering these episodes. Common triggers seem to be things that trigger migraines, lack of sleep, infections and stress both positive and negative. The first episode I remember was during my freshman year of college, some 27 years ago. I received a diagnosis of CVS only a few short years ago. Unfortunately throughout the course of time children and adults have been given a barrage of misdiagnoses or told it was psychological, all in their heads, it’s continuously diagnosed as gastritis, the bug or the flu. Honestly how many times can someone keep getting these viral things while nobody else in close contact ever gets sick. Many have had needless surgical procedures such as fundoplications, gallbladder removal, surgery for malrotation of the intestines.

I applaud you for your search for answers and an accurate diagnosis. There are nearly 600 families who participate in the national cvs organisations online message boards. www.cvsaonline.org

I would like to emphasize that in the vast majority of cases, treatments improve the quality of life for those children and adults who are affected by this condition. Medical research has come a long ways in the last 15 yrs. CVS was first described in the 1800’s so its not a new condition, it been until the last 15+ yrs nobody has had the ability to make those wheels squeek.
CVS is a multi faceted condition, which requires a multi faceted approach. I can tell you that as an adult with this condition, I live a full life despite CVS.

I would like to invite you to come visit the CVS site, join up on a trial basis. You may very well see your family’s experience described by others. Those of us with this condition often walk a similar path, it’s just we are at different points on the same road. www.cvsaonline.org

Hi,
My son Kyle is 13, & was just recently diagnosed with cyclic vomiting syndrome with autonomic dysfunction ( SATO’s variant) last year. We have suspected it for a long time but it took almost 8 years for tests & to find the right doctor’s to diagnose him. He was diagnosed at the Cleveland Clinic ( they have a cvs clinic).
Kyle started with migraines at 4 yrs. old, he sometimes vomited but only when he had a migraine, & then when he was a month shy of turning 6 he started with the prolonged vomiting even after the migraine went away.He was also diagnosed with hypertenion at 6 yrs. old, that is why they diagnosed him with the SATO’s variant of cyclic vomiting.
I really wish you the best of luck & hope you find the answers you are looking for. Be very proactive for your daughter, if you don’t feel like you are getting the answers you deserve keep pushing them. I also wanted to thank you for writing into the doctors. Because of you cvs got some light shed upon it.
Best of luck,
April

My son is now 11 yrs old and was finally diagnosed with Cyclic Vomiting Syndrome when he was 4. Before that diagnoses, the doctors kept blowing me off and saying he had the flu or it’s just how his stomach reacts. Deep down as his mother, I knew something wasn’t right. It was for my son at the time, happening every 2-3 months and needed to go to the ER because he wouldn’t stop, he vomitted every 5-15 minutes apart for many hours which he needed to go to ER for fluids and something to help him stop along with Zantac for his poor little stomach to heal. It wasn’t until I moved back home and needed to find another Pedi for my son that some good finally came our way. After explaining the situation, she immediately told me something is wrong. She got me into a Pedi Gastro doctor which she had to push along because they couldn’t see him right away and then after a long year of tests and the doctor finally consulting with a Pedi Nuero, the diagnosed Cyclic Vomiting Syndrome. They even had to give me that diagnoses in the hospital. I then sought more answers and I really am glad I did. We are still trying to get things right with his daily meds but as of right now, I can stop the vomiting but not the other syntoms like the stomach pains, dizziness, migraine headaches, lethargic feeling. We are working on that right now but my advice to you is to not give up. If you go ahead and go to the website www.cvsaonline.org, you can contact them and they can look up if there is any doctors in your area that can help get the diagnoses. At least if they know that this could be a possibility, they will be the best to treat if that is what is going on but on the other note, if not and something else if found then they can help also. Good Luck!

Stacey in Prescott, AZ…

Do not give up. YOU must be an advocate for your daughter. You are the only one that really knows your child so don’t be afraid to question/challenge the doctors when you don’t think you are getting the answers you need. Don’t be afraid to get second, third, or even fourth opinions. Ask for a referral to a pediatric gastro. doctor and an allergists. Cover all your bases… I speak from experience.

My grandson, almost 2 yrs old, has had a vomiting issue for over a year. After numerous visits to the pediatricians and not getting any answers his parents took him to a pediatric gastroenterologist for testing.

The results of the test, a biopsy specimen of his esophagus indicated a high number of eosinophils in his esophageal tissue, revealed my grandson has a condition called Eosinophilic Esophagitis or EE for short.

EE is an emerging disease of the upper gastrointestinal tract. It has been estimated that 8-10% of children with reflux disease actually have eosinophilic esophagitis. Eosinophils are white blood cells that are produced in the bone marrow and travel to various structures in the body, primarily gastrointestinal tract. Un-affected individuals should have no eosinophils in the esophagus. The presence of eosinophils in the esophagus is an indication of inflammation. It may be present as a result of acid reflux but it occurs in a far higher number of patients suffering of eosinophilic esophagitis. Food allergy is the principal cause of eosinophilic esophagitis and there is a genetic element to the disease – 30-40% of parents of eosinophilic esophagitis children have eosinophilic esophagitis-related symptoms.

Symptoms often start in infancy but are most prevalent in toddlers. Around 80% of patients are male. Symptoms of eosinophilic esophagitis are very similar to that of gastroesophageal reflux disease:

feeding disorders;
regurgitation;
vomiting;
epigastric pain;
difficulty swallowing;
food impaction (particularly in older children).

My grandson would go weeks without an episode and then out of the blue he’d vomit. He might vomit several times and then nothing for days or weeks at a time. The Dr. explained that it might take a while for the eosinophils to collect at the base of his esophagus and when the irritation got to a certain point he would vomit, clearing out the eosinophils and the cycle would start again.

The pediatric. gastro. Dr. referred my grandson to an allergist for additional testing. He has gone through 2 rounds of allergy tests which have confirmed his is allergic to many items, including chicken, eggs, cheese, milk, other dairy items, tree nuts, peanuts, other nuts, and even turkey (which really surprised the Dr!) He has a dietician helping plan meals around his allergies and hopefully future testing will not show other foods. But until those tests are done he is very limited in his food choices.

Cutting out the known allergens have reduced the vomiting spells for now. We are still learning about this condition as are many pediatricians!

For more information check out these resources:

http://www.apfed.org/

http://www.contestformoms.com/2007/10/living-wi…

http://stanford.wellsphere.com/parenting-articl…

http://www.actagainstallergy.com/aaa/4691-eosin…

http://www.medhelp.org/forums/gastro/messages/3…

I hope this info helps.

Nanner
Austin, TX

I am a 28 year old veterinarian with Cyclic Vomiting Syndrome (CVS). My first episode was at 25 years of age. I was diagnosed 1 1/2 years later by a wonderful doctor who had another CVS patient prior to myself. Before diagnosis I had episodes of constant vomiting every month to 3 months for an average of 5 days. I was tested for everything in the book and also had my gallbladder removed prior to diagnosis. It was not diseased nor did I have stones. I would like to thank the doctors for including CVS as a possibility for Stacy’s daughter. It is a very real disorder that is is not recognized easily. Most docs have never heard of it. Those of us who suffer have been accused of everything from faking it, to causing it, to drug seeking. It is very misunderstood as our symptoms mimic other gastrointestinal disorders.

Stacy, I wish you and your baby the best of luck in pursuing a diagnosis. Be persistent and proactive. You know your child and should see as many doctors as it takes to get answers. Diligent journaling is key for CVSers to recognize patterns and triggers in order to attempt to prevent and prolong the interval between episodes. www.cvsaonline.org is an incredibly wonderful and valuable resource for those of us who suffer. Please visit and compare notes with others.

I respectfully and desperately ask the doctors to continue to raise awareness amongst collegues of this disorder that is unheard of by most. I pray for the day that CVS becomes a differential diagnosis in the minds of all doctors when presented with a patient having chronic or cyclic vomiting patterns. Thank you all so much for your voice!

Angie

Stacey~
I am amazed at the responses you have gotten and wish you the best of luck. Just remember… vomitting is only a symptom at this point. Dont get so caught up in the support, that you miss other symptoms. I had never heard of CVS when I logged on here. If, 30 years ago, someone had diganosised me wrong with CVS, I would still be suffering. I was so fortunate to find a doctor that LISTENED. And fortunate that I had my gallbladder removed at such a young age. Make that your first priority… finding a doctor that will listen and look at ALL the possibilities. I had the same symptoms as the CVS diagnosis.

God Bless and good luck.
’belle

Stacey,

jaxbelle is correct.  Don’t get caught up in just one symptom.  Sometimes one symptom is so bad, that others can be missed.  The other thing I have heard from a lot of responses is be careful that you get a doctor that really listens to you.  Many of us have experienced the pitfall of doctors not knowing the answer & they try to blame emotional or psychological reasons for the symptoms.  

I’m sure you already have realized how important it is to get second opinions or thirds.  It’s even important to go to different specialist. Let’s say your daughter had a food allergy…well, then it would be helpful to visit an allergist & a gastro doctor.  If your daughter is having seizures, then don’t forget the neurologist.  Try to take an advocate (friend or family member) with you to your appointments too! Sometimes, as parents, we get caught up in asking questions & forget some things we needed to ask, or we go into an emotional shock & don’t always hear exactly what the doctor is saying.  It’s good to have other ears there!  

Take Care,

God Bless,

Sheri

I agree with jaxbelle, Stacy, don’t jump that it is CVS, but also remember don’t let them just do surgery because they can’t figure it out! Many people have had appendix, gall bladders, exploratories performed that were unneccessary. The frightening situation is that you sometimes just don’t know which way to turn. You want to believe and trust that the doctors/specialists know exactly what they are doing. But this is not the case, they try just like the rest of us do and are not trying to harm anyone or perform surgeries just to do them but surgeries are done when they don’t need to be done! You are your daughters advocate and voice until she is 18! You are the one that is fighting for her so no matter which avenue you take, you are taking the avenue that you (in your heart) feels is the right way to go! Listen to the doctors, trust yourself and follow what you believe is the right decision and if it proves wrong you just pick yourself up and keep searching until you find the right diagnosis. I for one pray that it is not CVS (but don’t rule it out) and a very quick cure is right around the corner for your daughter. God Speed!

Hi Stacy, I am a 31 yr old CVSer who has been dealing with this for 5 yrs it is a very real disoreder but like has been said above is diagnosed through exclusion, for me it was numerous stomach scans and brain scans all which showed nothing which can be very frustrating but if you have a dr. who is understanding and willing to keep looking until you find what’s wrong you will get there. One of the most frustrating thigs about CVS is that although it has been around since the 1800’s the medical community knows very little about it. Do not let the your Dr’s make you think that it is something you or your child are doing wrong it can sometimes turn this way when they can not find anything else that makes sense.
Check out CVSA site on line there is a wealth of information also, just for a basic understanding of CVS I started with the Mayo clinic on line site they break it down so it is pretty simple and easy to understand.
Wishing you the best,
Nikki

Hi Stacey, 

I have a toddler who was diagnoised with Hydrocephauls at 6 months. Cronic vomiting is a common symptom. Is your toddler able to communicate if her head hurts as well? Please have her checked out by a Nuerologist. If anything I can help rule out the unknown. Good Luck. 

Hi, I am watching the show now that had the topic of the vomiting 2 yr old and was so compelled that I had to get on here right away.
My neice Ally, she is about 2 1/2, had been throwing up frequently since jan. There were really no other symptoms. One day she was fine, the next she would throw up three or four times, the next once, the next none, and so on. My sister-in-law had taken her to the dr 4 times and to the ER 3 times. Everytime she went they said that she probably just had the roto virus that was going around. The last time at the DR they even sent her home with a ‘poop kit’. Thinking that it may be something wrong with her stomach.
Everyone had different thoughts of what it could be. Was she lactose intolerent, did it seem like she always puked after eating spaghetti sauce or pizza? Did she just have such terrible seperation anxiety when her mom went to work.
Then three months after this started, on march 8, they were at the park and she was getting ready to go up the slide and she had a siezure. She had three more on the way to the hospital.
Once they were at ST Luke they incubated her and did a cat scan to find some disturbing stuff. She had bleeding in the brain. Both new and old blood.
She was flown to childrens hospital and they started surgery immediatly. they litterally took off half of her skull to let the pressure go down and get the bleeding to stop.
It was so traumatic.
Now she is completly fine, just had a follow up cat scan on 4/7 (day of this show wierd huh?).

I just wanted to let everyone know that sometimes there can be serious things wrong and the dr’s don’t catch it because there was only one symptom. But if you feel something else is still going on with your child, PLEASE don’t give in and just go with what they say.
This situation could have been solved sooner and saved this precious little 2 yr old from all the pain of the seizures and the surgery and now recovery.

Stephanie

My Name is Trisha. I didn’t see this episoide but my sister told me about it and sent me a link to this. My son is 4yrs old and ever sense he was like a year he has had issues with throwing up, just out of the blue he throws up so vilontly that its coming out of his nose and hes crying and just pure hysteria. We never know when its going to happen he will go 3 weeks just fine and then for one week hes constantly throwing up. There is no signs before hand of it coming and after he throws up hes just fine again although most of the time it happens right after he eats food. The doctors have told me that he makes himself throw up, that he is allergic to chocolate that he had acid reflux, etc. Then this last month he had an epsiode and he was on his knees with such bad stomach pain that i took him to his doctor and she sent us to a GI specialist and they did an endoscopy and determined that his esophagus was inflammed due to producing extra acid and they put him on medication for it. After seeing this it makes me wonder if he too could have cvs. We are taking him back to his GI doctor this next week for a check up are there certain questions i should be asking or things i should be saying? i would love any advice i could get,

Thanks

Trisha

Trisha -

For more information on this please visit the SHOW SNOPSIS.

my husband has cvs. i was very surprised to see that it was talked about on network tv. i did not see the show, but learned of it while browsing cv sa site. this is a HORRIBLE illness that not only controls the life of the patient,but also of all those who are close to them and who love them. as said before,one of the most frustrating aspects of cvs is the total lack of knowledge and belief of its existence,ESPECIALLY by the medical community. this is a very real, very debilatating illness that hundreds, possibly thousands of men, woman, and children suffer from. my greatest hope is that shows like this and other media outlets will continue to inform and educate the public about cvs. it is not “all in their head” and they are not hypocondriacs or drug seekers as most [ including my husband] have been called. those with cvs not only suffer from its direct symptoms, but also from blank looks and accusations of those around them.  this is an illness that robs its victims not only of thier health,but also of thier self respect, and control over almost every aspect of their lives,at the very least they want and need to be validated. thank you for bringing some attention to cvs sufferers and their loved ones. whether cvs has touched your life or not, i encourage you to find out more at the cyclic vomiting syndrom assosiation website. when it comes to cvs, i have come to believe that knowledge truly IS power        – breeze