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wynnak

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Reply with quote  #91 
Erika.B,

Welcome. 

Your story is very similar to lots on their CVS Quest. Even my own. I literally googled "why can't my kid stop throwing up" and stumbled upon CVS. It still took us a long time to find someone capable of helping him. 

It was also about the age that he got his worst. We had had a couple times over the years that he would get sick for longer periods than other kids.. But were always told.. flu, food poisoning etc. 13yo was his worst year. technically 12-13. His episode started happening closer together, then lasting longer and longer. 

I am so excited to here that you get to see a neurogastoenterologist. I would have loved to get my son in to one. Typically they should know more about the brain-gut disorders than either GI or Neuro, because they are a specialist for the combination of. 

Please let us know how it goes.

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Erika_B

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Reply with quote  #92 
Well we saw the doctor today and gave our son's entire medical and family history.  The first test ordered was a series of blood tests, so we had the blood drawn (Oh man!  My son has a HORRIBLE time with this!) Of course the doctor said that if the blood tests yield no results, then he'll order an ultrasound and an upper g.i. x-ray.  He said he would save doing any endoscopy until after everything else has been done to determine if there any abnormalities. I liked the doctor, however, he commented that he thought my son may be a bit too old to be considering CVS. I hope he's not already ruling that out just because our son is 13. What is everyone else's experience with their children getting the ultrasound? Upper G.I.? I'd love to know. Thanks, all. Erika B.
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wynnak

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Reply with quote  #93 
CVS is a rule out condition. It is good that they are running them. 13 is not too old for CVS. It has typically been described as affecting kids. Not much out there for adults. Yet your 13yo is not an adult.

We would just describe everything to our son about the tests. Even when they wanted to do a colonoscopy on him. Luckily it didn’t get to that. But if the doctor is working with you and running the tests then I say go for it. Let them look 👀

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ginny

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Reply with quote  #94 

As Bynda states, 13 is not too old.  At one CVSA Family Conference the Medical Advisors explained the then theory about Pedi CVS, then Adult onset CVS (which might be a different condition) and said teen onset could fit either pedi or adult.  At 13, I would think he would be a pedi onset. 

Average onset is around age 5 but we also read about infants, toddlers and even elderly who start CVS symptoms.

The tests are important.  Ask for a tech or nurse who does draws on newborns, who works in the infusion department, or someone who works with special needs patients.  They might have a skill set considerably higher than another tech.

I can recall a blood draw on my 5 year old.  The tech was a wreck about a young child, called for back up and in the end made a calm kid very scared. 

We always requested a butterfly needle and someone from the IV department or neonatal dept.  Made a huge difference and the fear went away.

For an arterial draw we used EMLA cream--this can ease the discomfort but there are concerns about difficulty finding the vein.  I think for the arterial we started with a huge gob around an hour prior to the draw.  This was the only time it was needed.

During the cycles, with dehydration making things more difficult, heat packs helped.  Often my daughter was in a conscious coma and did not flinch when stuck.  Even if stuck multiple times.

Your doctor seems to be on the right track.  Try reading the NASPGHAN on the CVSA web page for the chart on symptoms and suggested testing.


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etira97

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Reply with quote  #95 
Hi all,
I am a 20 year old who was diagnosed with CVS way back in 2010 when I was 13 years old. One of my first memories is of having a CVS episode, so it has kind of been something I have always experienced. You can imagine my shock when I realized that other people didn't vomit as much as I did when they got sick. My Mom says she thinks it really got going when I was around 7, but as I said the memories go back farther for me so I'm not sure when it initially developed. I think my Mom once had an account on here but I'm not sure what her username was and I know she doesn't frequent the boards anymore. I only thought to come back on here and post after the CVS Awareness day. The CVSA was such a great resource for us when we were looking for answers and in the process of getting me diagnosed, I cannot thank you all enough! My Mom initially found the CVSA website sometime around 2008 I would guess and we realized that I had all of the symptoms of CVS. 

My CVS pales in comparison to some of the cases described here. I have a one day prodrome where I get a very bad sore throat, leg pains, fatigue, chills, and become light sensitive. Then the next morning I will wake up and begin vomiting. The vomiting is usually every 5 minutes, but I have had episodes where it was as frequent as every 2 minutes. I usually vomit like that for the first 8 hours and then it starts to slow down to maybe every half hour or hour. Eventually I will pass out sometime around midnight because I'm so tired. Then I wake up the day after feeling completely better (except for the sore stomach). I have only had one episode where the vomiting lasted like that for 3 days. I cannot imagine those that have episodes that go for weeks on end. I go into a 'conscious coma' so communicating with people can be very difficult. I think I was having episodes around every 2-4 months from ages 7 to about 12. Then when I was 13 and actually started getting treatment for my CVS, I would have around 1-2 full blown episodes per year that would put me in the hospital and the others I would be able to abort. Currently, I am sitting at THREE whole years without needing to go to the ER. I had an episode in August of this past year where I was certain I would start vomiting and be in the hospital. I took my normal abortive medication and experienced a turn-around like I've never had before. Usually I take this medication out of faith and spend the morning hours fighting off the nausea. But this time within two hours the nausea had completely dissipated and I was up and about. It was amazing and completely unexpected. My Mom and I have always assumed that my CVS was triggered by strictly viral illnesses (and possibly negative stressors) because of how viral in nature my prodrome appears, but I am starting to second guess that now. I am hesitant to say I am "growing out" of CVS because of how loaded those words are and how much we just don't know about CVS yet. As I said before, it also appears I had a mild case. It seems from these message boards that many people do get better as I have but often have episodes again five, ten or fifteen years down the road.

Since transitioning from pediatrics to adults I lost the GI who treated me since I was first diagnosed. I worry about having to go the ER for an episode, since I have had so many bad experiences. Hopefully though now that I am doing better that will not be the case. When I was a pediatric patient I had an ER protocol so I was able to get an IV quickly, but I lost that once I transitioned to adult care. Since I was constantly accused of 'faking it' or 'doing it for attention' whenever I went to the ER when I was younger, I avoided telling any of my friends. It has been something I have kept to mostly to myself until recently. I have an easier time talking about my CVS since I feel like I am farther away from it. I really hope that the episode in August was my last. Although I do have occasional days with early morning nausea, I am a university student who is happy and healthy.
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wynnak

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Reply with quote  #96 
I cannot tell you how happy I am to hear that you are doing so well!! Thank you for coming back or rejoining us as you so the case ma be. If your mom remembers her email. We may be able to locate her info, if you’d like that. My son is 19 and in relatively the same type of place. Mott people do not come back to the boards to tell us that they are good, or have been able to manage care. I know the change to adult care is daunting, I have told my sone that we navigated the turmoil before, we will do it again. If it becomes an issue. We hope that it won’t, but like you said, there isn’t enough known about CVS to say that you may be clear. We have just chosen to live in the moment. Live for now. Take each step as we want. We managed things before.. barely.. but we made it work.

I am glad a to hear that you are doing well. That CVSA was so supportive of you and your family. I love that you have have come back to tell us. Hopefully you will stick around and help give that support and encouragement to others

I can not tell you how many times I see or talk with kids your age that focus on if it will happen again, instead of being a kid your age. I say kid because my kids are your age. Not to imply that you are not mature. My son the one with CVS is the most mature “kid” his age. CVS did that to him. He does not talk about CVS with his friends either. The ones that are left. He lost a lot while he was his worst. So although I can relate to your situation, no one will understand like you and him.

He only discusses CVS around others with CVS. I think it has helped him cope and process that he isn’t the only one. He is looking forward to going to he conference this year in Milwaukee. He went to the run last year and met amazing people just like him. It was wonderful. There were not a many people there his age. I hope for a few more at the conference.

Your message is amazing. This makes me so happy to hear. Thank you agai for sharing, And Welcome!!!

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ginny

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Reply with quote  #97 
Etira, such wonderful news!  My daughter is one who I think has "outgrown" CVS.  CVSA contacted me way back when and we fit the "profile" in all but a single category.  Like you she attended university and then later completed graduate school.  She is married with children and has a great career.  She is healthy, happy, and free of CVS.

You are not too old to have outgrown it.  I hope that August was your final episode.

If you want to private message me with your mothers name I can do an archive search for you.

I am the original volunteer from the support systems CVSA has had in place.  We went from an email support to bulletin board to message board and now CVSA has official FaceBook sites including (I think) one for those of college age.  

Like Blynda, I am thrilled to read your message.  Thank you so much for taking the time to come back and let us know how you are doing.  I am sure many will be encouraged with your news.

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etira97

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Reply with quote  #98 
Thank you Wynnak and Ginny! I am glad that my message will hopefully help encourage others that CVS can be controlled! You have also given me more hope that I am outgrowing it. It seems when people talk about outgrowing CVS it is around age 12 which is when mine was still fairly bad. I wish we could get some good studies on this to know for sure. I will try to come back and post on how I am doing in the future. I am glad to hear that both of your children are doing well! 10 years seems like forever to go without an episode. I'm actually taking nursing in university. I would have never thought to do so if it weren't for my own experiences in hospitals, so at least one good thing came out of my CVS.

Yes Wynnak, I used to focus a lot on if or when my next CVS episode would be, but I have found that I am gradually getting out of that habit. You are right that not many people understand what CVS is like or I think are capable of understanding. Probably because everyone has experienced vomiting in their life, and I don't think they can understand how vomiting could be so painful or debilitating. I think the people that understand best besides those that have it are the caregivers or parents. I think my Mom understands what it is really like because she is the person that has taken care of me through every episode.  

I will talk to my Mom and see if she remembers her name/login. Thank you both!
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5555bambi

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Reply with quote  #99 
Hello my name is Breeze. I actually did a long story yesterday and I don't know what happened to it. I can't find it anywhere. Oh well here I go again. About 1or 2 yrs ago I was looking on line for extreme vomiting. And I found cvs. I could not believe it. I believe I have had this problem almost my whole life. I am 67 yrs old. This Jan. I had a bad episode. I through up 1 1/2. I refuse to go the hospital you have to wait for 4 to 5 hrs before they will see you. I told my doctor that I have this problem. And he told me that he was treating 3 other people with this problem. I also had a episode in Feb. that was 2 1/2 days. This is getting worse not better. The doctor gave me Ondansetron. I went home and took it because I was still nauseated. This med. was over $700.00 thank God it was covered under my husbands insurance. My mother died in the middle of Oct. she had dementia. She quit eating and for 2 months we watched her go down hill. She starved herself to death. One of my triggers is stress. Also another trigger for me is not enough sleep. That will do it. Also if I house clean and don't take a break I will start to sweat and I realize that I need to sit down then I get this jolt in my stomach and become really nauseated. If I don't catch this attack it is game over. Because once it starts that it is. Nothing will help me. At that point I need to be hospitalized. Also people really don't understand this cvs. My husband understands because he sees it. This is not normal throwing up, this is extreme vominting.
I have lots of anxiety and I take Venlafaxine. This seems to keep me levelled. Last week I though I was going to have another attack but I took Ondansetron and was lucky. Also another trigger is if I don't have breakfast and no lunch that easily will bring on a attack.
My heart goes out to everyone here and your stories. This is the 1st time that I have ever connected with people that go thru the same thing I go thru. I don't feel so alone. 
In closing I would like to say have a great day.
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ginny

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Reply with quote  #100 

Welcome Breeze.  You sound like you might be a great candidate for the supplements.  You can find the latest information on them pinned to the top of Main Forum.  Be sure to discuss with your doctor.

Ondansetron (Zofran is one common name) helps some but not everyone. Everyone seems to be different in what helps them.    If you can get the oral dissolving it might help quicker than trying to swallow a pill.  

It is good that you know some of your triggers.   There is a lot of information on the message board from others who find friends and often family do not understand CVS.

CVS is a difficult disorder to have.  It is said to be the most violent vomiting known to exist.


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ginny CVSA Moderator
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5555bambi

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Reply with quote  #101 
Hello I'm Breeze I would like to say from the last episode I had which was 2 1/2 days in Feb.  
the doctor subscribed Ondansetron which I took it did not stop the nausea. I said God you have to help here. To make a long story short I found something on youtube called Happiness Frequency Serotonin Release music with Binarual beats, Relaxing music for happiness. I lay quietly in bed and focused on the sound.  In 45 mins my nausea was gone. 
This blew me away. I know that what works for one doesn't necessarily work for another.
Just last week I woke up and felt strange like a attack  was going to start. So I took my med. So I caught it before anything started. In closing I would like to say to everyone have a great day. 
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wynnak

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Reply with quote  #102 
Breeze,
I have seen other things similar to this, especially for migraines. There are different types of migraine specific beats and tones that can help with migraines.
I’m glad that you found something that helps you. Thanks for sharing that.

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Blynda
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EJ

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Reply with quote  #103 
New here.  My 8 yr old has cvs (for several years) and she now receives treatment at Children's in Milwaukee.  We've had to switch meds several times and still are looking for the most effective ones for her.  We got a grant to attend the conference this summer and looking forward to going!

EJ
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wynnak

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Reply with quote  #104 
HI EJ,

What brought you over to the boards?

We went through several meds for my son as well. Trying to find the right combo.

I so happy that you found a way to come to the conference!

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Blynda
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EJ

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Reply with quote  #105 
Always looking for more information!
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