Cyclic Vomiting Syndrome

This has been our life for the last two years. At least giving the demon a name helps us deal with it. We can seek support from others who suffer from the same issues. 

The problem is though, what you have to go through:

1) getting the diagnosis

2) dealing with the illness itself

3) educating the people around you about it.

4) that there is no cure. 

 

More needs to be done. More research, more assistance, more relief, more education.

 

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10 Responses to Cyclic Vomiting Syndrome

  1. The biggest hurdle we face is awareness. The more we talk about it, the more people will hear and remember. There is also stigma with this disorder. Can’t tell you the amount of times ER docs have accused me of being a drug seeker because of the drugs it takes to stop my episodes.

    • adventurant says:

      Not Just ER Doctors. We have had the specialist we have taken my son to, not listen to anything about his case, tell him he’s faking it, to “take a bucket and go back to school, that should cure it.” These are doctors treating CHILDREN!! Had another one tell us that because she is so overwhelmed she only treats “acutely ill” children. I mentioned to her that him vomiting for 13 weeks up to 30 times a day and requiring daily IV’s doesn’t qualify as acutely ill? He was pushed from doctor to doctor from facility to facility that just didn’t know how to treat him. More and more we dealt with the ego’s of doctor than getting one that would just say, “I don’t know how to help him” like the one that had helped us get the daily IV therapy for him.
      My son has a rare strain, or he just is weird.. but he does not respond to typical meds used to treat CVS. Which has made him hard to treat. Very hard. His episodes really have had to stop on their own. The one that went 15 weeks, ended for the most part once they had to turn to nutrition and bypassing his stomach.. but only lessened the vomiting to about 3 a day. But when you go from 30 to 3, that is significant improvement.

      Our challenge at this juncture is School. They have never encountered anything like this before. They can’t understand it. They aren’t receptive to what I have given them. They don’t understand that we are LEARNING about it ourselves. They aren’t willing to work with us. Sure we have gone through the steps for the 504, but that helps when he can attend school. It mentions that he will frequently miss school. But it doesn’t help when he does miss school. When he needs to stay prone to help limit the vomiting. Then he gets behind. He misses quizzes and tests and regardless of how much work he can try to do to keep up, still has low to failing grades for a couple of missed tests or quizzes. I can not emphasize enough to the staff of the school that we try to keep him up with the rest of the school so having them tell me that he can just make it up.. gets frustrating.. right now he has 6-7 tests or quizzes in each class he needs to make up. he has only been out for a little over a week. We are expecting with his episodes over two more weeks. We have a “stop” set for the 14th.. but it takes a couple days for it take take effect. So frustrating.

      I really need to find a way to involve the school with his illness.. but that would embarrass the crap out of him 🙂 No happy medium.

      • Wow, you are really having a hard time with the schools. Are you an active member of the Cyclic Vomiting Syndrome Association? The reason I ask is bc they have been such a wonderful resource for me. The website has grown and has many helpful resources. There is also an online community. The forum moves a little slowly, but you will find scads of other parents just like you that are dealing with schools. I was in college when mine started so I am clueless about the school stuff. But, you can find some other parents and get advice. Some schools work with people more easily than others. I don’t know what the difference is. Awareness, maybe? I would search the forum for your topic and/or make a post about your situation. The post you just made on your page would be perfect. People will pipe in and give you advice. It’s great. I actually found the drug that took me from vomiting constantly for five days, and spending that time in the hospital, from the online boards. I learned what other adult onset people like me were having luck with, and it worked like a charm on me. So, http://www.cvsaonline.org and join the membership. You will find linds to some of the best docs there are to treat this. Maybe you could even see someone that is farther away for an initial assessment, and then they could manage the case through the local doctors… I wish you luck. I know that you and your child are suffering. I’m so sorry!

      • I hear your frustration. However, I was adult onset in college, so I didn’t deal with public schools, so I don’t have advice on that. I know who does though… Are you a member of the Cyclic Vomiting Syndrom Association (CVSA for short)? If not, it will become your most valuable resource. I can elaborate more if you haven’t heard of it, but you can go and join them online. The website is great and has oodles of info. There is also an online community full of parents and sufferers just like you that talk on the forum and swap ideas. I highly recommend it. That’s how I found the correct medication that worked for me. I heard others talking about having good luck with it, and had to beg my doc for it, but when I got it I stopped vomiting for 3 years!! You can ask others in similar situations what they have done. I know I have read tons of threads on parents dealing with the school systems. The goal of the organization is to promote awareness and help those with CVS. The organization is growing, and we have really spread the word over the past few years. http://www.cvsaonline.org I’m curious to know if you are a member or not….

      • adventurant says:

        Oh, yes, We are. It has been a huge support during some of our roughest times. My son’s case has been one of the most challenging that even they have heard of. They have been a wealth of knowledge and support. But as I mentioned.. he doesn’t respond to any of the typical meds. They have had to go outside the box. We have now ventured in to territories that include having to have the medications mixed or imported as they were taken off the market due to the abuse of them for there side effects. Weird stuff you learn when walking into the unknown. Most hospital staff I encounter now think I am in the medical field because of my extensive knowledge that has only broadened by this. The doctors that are involved with my son’s “case study” take every thought and opinion we have under advisement.. which is nice for a change.. because lets face it, we see and deal with this ALL the time.
        Today for example. Random lightbulb that went off in my head.. There was a medication that they gave him in the hospital that worked very well, but the insurance “covers” but our portion of it would be over $1000 a month at home.. well, if he is going into an infusion center for intravenous fluids, could we get that medication given at the infusion center and get it covered less than the “at home” cost? Wouldn’t it be similar to him being the hospital? Suggestion that the specialists office will take into consideration and check into for us.
        But back to CVSA, I have been trying to figure a way to give back to them. Right now part of my son’s story is posted under the story’s of hope on CVSAonline. If you have looked through my page here you will probably recognize it. There is not a branch or location out here for them, but until we get a bit more stable, it’s hard to commit to. But I am inspired, for now it will have to be, this. Blogging, and trolling the message boards on CVSA inspiring and learning from other people experiencing the same thing. That is really what made the tone of my blog change. Everyday is a challenge. The schools are the worst. I’m not sure how much I can post with out getting him kicked out of that school, but they tried SO hard to do that last year.. that we are afraid to kick the hornet nest this year. Especially since we don’t’ know what will happen. My kid is the best, and this is a bad thing that happens. We’ll manage, but dealing with the roadblocks and hurdles, gets overwhelming. You know. And there is not a way to MAKE people understand. They can’t, they won’t.

  2. I’m so glad to hear that CVSA has helped you. You are most definitely doing everything possible to help your son. The people outside this disorder stigmatize it, and I feel that makes it harder to deal with than issues like mental health. People on the outside want to put the blame somewhere it doesn’t belong. Outsiders judge and accuse us of making ourselves sick. The people who truly KNOW me, know that I am in misery and would never cause myself to feel that way. Outsiders thing I’m making it out to be worse than it is. Nothing is more invalidating. I’ve been a pretty tough cookie my whole life, so others expect me to be tough. When they see that I am unable to function, they automatically think it is “put on”. If they only knew. If they could only feel what I’m feeling, they would never ever make me feel invalidated again.
    The schools don’t seem to care either. I’m so sorry for you, your son, and your other family. I hear your story so much with the other parents. Even though I have dealt with this disorder too, I can only imagine the frustration you must feel. I was in vet school when I was being diagnosed, and they were very accomodating. Sounds like your situation is ever more complicated by the lack of response to meds. I’m so sorry. Keep on trying. Keep trying supplements and different combinations of meds.
    The child onset and adult onset CVS are so different. I have focused on info for adults, so I’m not sure about the patter of childeren. Due to my mental health issues that compound my CVS I am curious to know if you think that your son struggles with anxiety or any other similar mental health phoenomenon?

    • adventurant says:

      Actually, my son is very well rounded. Even the psychologists that examined him while he was in the hospital said he was. Even dealing okay with all the he had been through. He was a little depressed about being away from friends when his episodes were rough, but he deals very well with things. We have a very open relationship and think keeping communication open and up front keeps kids from getting into trouble and weird places. We know kids will try things and prefer that they are safe and get to and home from situations that could be hazardous. It seems that so far it has been okay. But our oldest is a girl.. My son may just be a bit more trying. He does argue about his care. Would rather not do the daily IV therapy. But I am still the adult.. So he has a bit more fight in him. But mentally I think he does stress more than the average person, but from expectations he puts on himself. So that may be all. I think his growth spurts may actually be the cause of these episodes. That would be weird.. But I think it may.

      • Child onset is so different. I’ll be so excited the day they figure this disorder out… He does sounds like he is handling it well. I don’t believe there is any way a person could deal with this disorder and not carry around extra stress and anxiety. I hope he continues to deal well. I’m sure he will with such smart parents to help him along. You are teaching him that sometimes life sucks, but there is a way to manage and have a wonderful life despite those things. Also, I agree with your parenting philosophy 100%! Children will live their lives and experiment. It’s best to give them a safe environment to learn how to handle their choices and also the consequences of them. I was terrified of my parents and being in trouble. I snuck around for everything. I’m super lucky i was never killed due to my choices. My parents didn’t and still don’t know the true me as a result. That’s sad. But I can’t talk to them about things. They made it that way. I won’t do my children that way. They will know they can come to me for anything at any time and that I will be there to help them, rather than make them feel bad.
        I think you are doing an excellent job as a parent with so much on your plate!

      • adventurant says:

        Well, thank you for saying so. My parents completely disagree. But then they almost always did. Which is what made life difficult and made it so I don’t have a close relationship with them, and I have told them so 🙂 When you apply to much pressure, that pressure tends to end up blowing up in your face. My parents were very strict. SO when I rebelled.. I rebelled. I didn’t turn out well.
        I definitely have a different parenting approach then my parents did. But who knows whose doing it right. I couldn’t wait to get out.. My 21 year old seems content to sit and never leave. So obviously its too comfortable to live at my house. We might have a good relationship, but that means she is settled in and content to be so. And knows me well enough that I couldn’t kick her out. SO there are draw backs.
        We always hope we are doing it different than our parents, but I think just the time and technology makes changes to that. I just hope I don’t mess them up too much :). Life has a way of doing that on it’s own.

      • Very true. I want to find that happy balance if I ever have children. I’m worried I might be too lenient, but I think that is better than too strict. How did your parents react when you told them how you felt. I have daydreams of telling them, but I don’t want to deal with the aftermath…

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