Sharing CVS with your child's school

READY SET GO!
Here's a great way to introduce CVS to your childs new teacher.

Dear Teacher,
Congratulations! You have been blessed with having a child in your class this year who has a rare medical condition called Cyclical Vomiting Syndrome. These kids are amazingly strong and can accomplish many things! These students are hardworking, fun and a pleasure to have in class. However you might notice that they are out sick more than most. As any caring teacher, you might feel concerned about why they are out so much and what you can do to help. GOOD NEWS there is SOMETHING you can do to help!

Let me share with you a little about what CVS (as its commonly referred to as). This condition effect 2% of children. Chances are there are, you've had other students with it before and never known it. Thankfully more and more children are being correctly diagnosed each year. Many of them are just written off as having weak stomachs, or thought of as the kids who get the tummy bug over and over again. It's not uncommon for a CVS child to have other conditions such as Mitochondrial disease, Autism, and Anxiety disorders which frequently get thought of as the cause of the vomiting.

CVS does involve throwing up but is very different from viral illnesses. CVS is actually a MIGRAINE VARIANT, which means it is actually triggered in the brain and not in the stomach. During the vomiting the child is often very sensitive to light and sound, as well an intense retching long after the content of the stomach has been emptied. When these kids throw up it typically is more than 6x an hour for multiple hours, days or even weeks. They frequently require Emergency Room treatment or hospital admission several times a year (on average 3-4 times).

Many children begin an episode in the early morning hours, so you may never actually see one yourself. Other children do get sick during the day, so it's key that you are aware of the signs, triggers and what to do when you spot them. OPEN COMMUNICATION with us is key prevention. Please feel free to send an email, text or note home if you notice any of the triggers throughout the day. This will help the us give pretreatment medications that could spare the student another hospital admission.

The best TREATMENT for CVS is a team approach in managing trigger (commonly excitement is a big trigger for most). Since children spend approximately 30 hours a week at school, your role is very important. I promise you that we will do everything we can at home to support a healthy lifestyle and to encourage learning. My child is amazingly strong and is so much more than their medical condition. I look forward to a wonderful school year ahead! Together we can ensure that this will be the best school year yet!
Sincerely,
CVS Parents Everywhere.


 For more information about CVS please go to: CVSAonline.org
Hope Starts Here

Growing up

My son started with CVS around age 3. A magical thing is beginning to happen now that he is 7. He's able to talk about it finally. Until now he's ignored all questions I've asked about what it feels like and if he's aware its coming.  I've had to always figure things things out by his moods, energy levels and trusting my mommy sonar. He also shares his thoughts by the lego creations he builds.

This is a huge change for us. I asked him what happened before I found him laying on the bathroom floor in the conscious coma. He was able to share with me, he was getting up to go to the bathroom when the pain hit suddenly and all he could do was lay on the floor. He never made it to the toilet if that give you a better idea of the pain he was in. I asked him why he did not call for me and he said he could not but he knew I would come help him because I always do. (Glad he knows we are there to take care of him when he can't)

When he was younger he would not have even attempted moving to the bathroom and several times I'd find him face down in the vomit on his pillow still in his bed. I can see why many parents get service dogs to alert them when this happens. We do not have a dog (having 6 kids and cat is enough to manage for me). He shares a room with his 2 brothers who are with him and are able to let us know.

He's always been able to motion to me when we need to go the hospital since he was 5.  We would always take him. He would even lay still as they put in the IV knowing that it was the only thing that would stop the retching which is typically 10x an hour for hours on end if left at home.

As he learns more the warning sensations I am more aware he's growing up. Someday he will be his own advocate and I will be only his helper. I'm so proud of him and he's only 7. He's no longer the defenseless infant or toddler. He's no longer the sacred preschooler.

He's a mature 7 year old with over 22 hospital admission experiences. He's learning how to communicate his needs and do what he needs to do get them met. Other kids may have done this at an earlier age.. but for a child on the Autism Spectrum and Anxiety disorder, this is a huge gain. A huge step forward.

A kid who can think this creatively... (took the legs off to make them look like they were swimming) I cannot wait to hear what else he is thinking about. He's got a lot to say.... and it may not always be with his words, but he is learning to use them better and better.

Rare But Not Alone: Raising a Child with Cyclical Vomiting Syndrome

Click on here to see an updated sample.

as of May 26, 2014 see the table of contents  and 2 selections.

Send me an email submission to rarebutnotalone@gmail.com or follow our progress on the project at https://www.facebook.com/cvsmom
Or join out support group at Rare But Not Alone A closed group for sharing.
Keep on the look out early fall 2014 on Kindle Ebook!

Colleen

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Rare But Not Alone Raising Kids With Cyclical Vomiting Syndrome

It's never fun when your child end up with a stomach virus and throws up all over the place. Now imagine it happening for days on end and nothing you can do to stop it. The vomiting continues long after all the contents of the stomach have been expelled. Ok, if this was once or twice a year you'd expect to be just a part of being a parent. However your child does not follow that pattern and throws up the same time of day in a clear pattern that you have come to be able to predict. You know your child has more than just the stomach flu, you a parent know that there has got to more to this. This can't be normal. And it's not.

Cyclical Vomiting is a rare migraine variant that many medical professionals know little about, but that's about to change. No longer will parents have to accept the diagnosis of it as anything more than "stomach virus". No longer will parents be dismissed as crazy or over exaggerating about how many times our children vomit in a given hours which is often more than 10x. Until they watch it for themselves in the emergency room or pediatric floors world wide. We are but we are not alone and we are speaking out about the reality of this condition.

Rare But Not Alone, tells the stories of real families of real kids living with cyclical vomiting. It focuses on the many different paths the lead us a diagnosis, creative ways to ride out the storm of a cycle and how to maintain a healthy attitude about it. We discuss the question of education to homeschool or public school and how to advocate for your child to get the help they need to continue to grow and learn. Another area of concern is how to better advocate for your child in the hospital, when to go to the hospital and reassure them that most kid do outgrow this condition at some point. We also share stories of the joys and challenges that families face together as well as what we can do to help siblings The Sky is the limit for CVS kids. They often do reach their goals and do some pretty amazing things.

Though friends and family members probably have never heard of it. We are finding support thanks to the vast resources of the internet and social media networks. We are often told it's all in our heads, a mental condition, or just the result of poor parenting. Parents now are able to have easy access to vast amount of research at their finger tips that other generations before could have only dreamed about. There is a name to this "puke monster" as many have called it. Equally important to the name, there is treatment options to better manage the condition.

We are raising awareness within our community, and in the world saying that CVS is real. Our children will hopefully not face all the accusations of it being a behavior problem or mental issue as other generations were often told. Together we will educated the world of CVS by telling our stories.

School Considerations in the US

SCHOOLING OPTIONS AND CONSIDERATIONS 

Now that he's back to a more stable position we are looking into a Charter School which has more project and creative based learning. Both of which fits his personality more than the traditional school setting. There are so many options to try for education. 

• Homeschool (parent led) 
• Homeschool Co-op (parents and other homeschoolers) 
• Homebound (School provides tutors and maintains records) 
• Online Schooling (Internet based learning) 
• Shortened Day /Traditional School with Accommodations (504) 
• Traditional School with no accommodations needed 
• Private School 
• 
  
  

Within public school system of the United State,  there are laws in place to ensure a free appropriate education for students with disablitlies. Below summarzes what your options are as a parent of a child with a health condition that could qualify them for services, depending on the severity. When appoaching school systems make sure your child doctors document the condition and what limitions your child has and how it is likely to effect his or her education. 
Click link below to read more about

504 and IDEA Comparison Chart 

With a well documented diagnosis of Cyclical Vomitng syndrome MOST if not all children in the US should qualify for a 504 plan mentioned above. The term the school will use is Other Health Impaired. IDEA states that: 

Other health impairment means having limited strength, vitality, or alertness, including a heightened alertness to environmental stimuli, that results in limited alertness with respect to the educational environment, that— 

(i) Is due to chronic or acute health problems such as asthma, attention deficit disorder or attention deficit hyperactivity disorder, diabetes, epilepsy, a heart condition, hemophilia, lead poisoning, leukemia, nephritis, rheumatic fever, sickle cell anemia, and Tourette syndrome; and 

(ii) Adversely affects a child’s educational performance. [§300.8(c)(9)] 

When Health Affects School Attendance 

It’s not uncommon for a child with an OHI to have periodic absences from school, sometimes even lengthy ones, especially if hospitalization is necessary for whatever reason. During these times, the public school remains responsible for providing educational and related services to the eligible child with OHI. Because IDEA specifically states that special education can be provided in a range of settings, including the home or the hospital, states and school districts will have policies and approaches for addressing children’s individualized needs and circumstances. 

The school, therefore, is the best source of information about what local policies govern how services are made available to children with OHI who are home-bound or hospitalized. When the child is at home, the school may arrange for a homebound instructor to bring assignments from school to home and help the student complete those assignments. When hospitalized, services may, in fact, be provided by the hospital, through arrangement with the school, although this will vary according to local policies. (In any event, the hospital is likely to have policies and procedures of its own, and it’s important for the family to find out what those are.) The hospital may want to review the child’s IEP and may, with the parent’s permission, modify it during the child’s hospitalization. Then, after the child is discharged, the hospital will share a summary of the child’s progress with the school, in keeping with whatever local school policies are. 

http://nichcy.org/disability/specific/ohi 

504 Accommodations (as they might relate to CVS kids) 

• Reduced Day (more time to adjust to full day or make best use of limited energy if applies) 
• Reduction in homework load (to enable kids to be able to get the rest they need and still have a quality life outside of school or extended time to get it done) 
• Ability to type rather than handwritten if hand weakness is an issue. 
• Snacks or Water throughout the day 
• Extended time to work on test or advanced knowledge of projects so that things get done on time (factoring in the probability of a hospitalization that might disrupt timeline) 
• Excused sick days that might be numerous and avoid truancy charges. 
• Have rest breaks at school as needed in the nurses office 
• Open communication with Parents and teachers about warning signs of cycles coming ( i.e dark circles under eye, poor eating or extreme mood swings) 
• Make sure school knows what to do if cycle starts at school (quiet dark place, call mom/ dad ASAP and give abort meds if they can be given orally, teach child to do own suppository or nurse to do IM injection) 
• Have plan set up that after x days out school will provide tutor come and help out or help set up peer tutoring. 
• Get the name of at least 1 other students in the class for your child to communicate with about assignments. 

All students success and positive experiences hinge on excellent parental and teacher communication. Proper health is also a foundational aspect ,that so many teachers and students take for granted.  Education is also about more than test scores and grades. Its about learning and personal growth and achieving skills. Do not let grades or state standards dictate what your child must learn when. Often a sick child need to learn how to live with repeated hospital stays which is both physically and emotionally draining. This can be viewed as learning experience as well  because they do very often become familiar with medical terms and treatments that other kids do not. There's no state standard for that... but it's often a very real part of our children's lives. 

Learning is all around us. As parents do need to advocate for our children, and remember we are the primary educators. We have the freedom (in most countries) to make decisions of how, where and what our kids learn.  As a parent of a chronically ill child, we do have to very often get creative in the ways in which this happens, and make many sacrifices to see that it happens. We may opt out of public education for a period of time to regain basic health. We may opt for a different style of learning  in charter schools etc. We may opt to stay in public school and fight for tutors and homebound education.  

There are so many options out there... so its important not to feel boxed into only 1 choice because more often there are other options out there. Also remember this plan can be flexible and change as the needs present themselves. To think differently is not about failing to be keep the "norm". Its about working with what we have for the best for our children who live with Cyclical Vomiting Syndrome. Do what's best for the child, even if that means thinking outside of the box. I'd bet we get more than one doctor out of this bunch... and I'd bet they might be the one to find better treatments options for CVS. 

Dare to Think Differently

One blessing I think CVS and Mito have done for our family is that it has made us take brave steps in thinking differently that we otherwise would not have done. Yes we all can list the things we have not been able to do because of it. This is my challenge to myself and to you to make of list of the GOOD Things that have come from it. Here is one thing I am thankful for... I will do more in future posts.

Homeschooling.
Because my son cycles frequently and requires many hospitalizations, we made the last min decision to homeschool him this past Sep. Yes I always talked about homeschooling all the kids, but well I was just not that brave to actually do it....that is until CVS. We went to first grade open house excited and nervous. We pretreated at home and prayed for the best for the first day of school the next day. But of course we got the 4am puke wake up call and were in the ER by the time he should have been getting ready for his first day of first grade. This proved to be a 6 day hospital admission this time.

 As I thought and thought as we struggled to get the puking under control even in the hospital setting...I knew something had to give. Something had to be different, outside of the box, if not I feared I'd just be moving into Southern New Hampshire Medical center for the school year. See a helpful thing was this, I'm dyslexic, and by our very nature we are very adaptive, and innovative type people. But homeschooling could I really do it. Well honestly it could not possible worse than the track we were heading on if we stayed this course. I'd already graduated high school, college and graduate school, all things that seemed un obtainable when I was in first grade.

I always said I could teach anything but not how to read and that's proving to be true... but that's a whole other story. For now what I can do is inspire him to learn in a less pressure environment and teach him in the ways he learns best. I can teach just about anything with legos :) We read stories of history and then build them. We do math problems and solve them with legos. We create scenes and then write stories about them together. I think he has the same dyslexia I do, so we do everything orally until proven other wise and we get more supports in place for that.  I read to him classics like Ralph S Mouse, Trumpet of the Swan, Geronimo Stilton books, and many more. We have quite the list of books that we've done together.

And Yes I do count Minecarft buildings as assignments. He has a natural gift with spacial learning and art that would never have been fostered to the extent it has if he was in a traditional school setting.

He's finally gaining weight and is back up to a healthy BMI (body mass index). Hospital stays are still common but spaced out further apart from every 2 weeks lasting 3 days to 6 weeks lasting 24 hours. Those are huge gains for us. He's happier, he's calmer and has more time to focus on his strengths.
 
Is this all easy? No. It's challenging.i doubt myself all the time. I question our approach.... Could this really work? Of course it can, this is how kids learned for generations. Is it different than the majority? Yes....  Is it worth it? YES! 

I'm a realist by nature. I tend to focus on what is and see what we can change and what we have to live with or deal with that's out of our control. But this leads to a greater appreciation of simple things, simple joys, and everyday blessings.  I know we won't be able to do of many your status quo stuff..trips to Disneyworld, or traditional elemtary school for him. but who says you need to? Life is about finding Joy. So what if my joy is having a short episode and short hospital stay, and joy in his latest innovative story or design and yours might be a student who's on honor roll or playing on a sports team. Joy is joy no matter where you find it. Will things always be like this.....? God only knows... but for now this is what is....and I am going take a good hard look at what is... and find the good that can come of it. D

Different is different... not necessarily all bad...and other approaches to life are not failures....ITS ALL IN THE MATTER OF THE WAY YOU CHOOSE TO VIEW IT.

 Because of this..... We get to focus on a lot of this.....

Give and Take.... Reflections on treatment options for children with Cyclical Vomiting Syndrome

Everything is give and take.. take the bad to get the good.. and try to find the right balance... but what do you when you are no longer sure which is worse the side effects or the problem it is trying to solve.

When we started with CVS a simple dose of Zofran and IV fluids were helpful. Then we moved to needing to do Zofran Ativan and IV fluids combo. Then we added preventative meds round 1 ( too sedating and was still frequently getting sick) Then to preventative med round 2 ( which he then refused to eat anything while he was on it). Then you regroup and just go with strong abort plan for a few months til that becomes not enough again.....

Then you revisit med option 1 again (same outcome) and the same for previously tried 2nd option with same results. You read you research... you learn about supplements and can't wait to start but waiting for genetic dr to order correct dosages for you. Your ace in the hole which kept attack to 24 hours hospitalization instead of 3-4 day is now starting to cause problems with side effects as well.....SIGH......Here we go again...(update: our ace med is fine, complication is due to infection from injection and not med itself)

Making choices of what side effects you can live with and which you cannot, can be a very difficult choice. Your dr can highly recommend ones but ultimately it's our decision as parents to agree to them and to find a way to get the child to take it. Its important to be educated on options that are out there and to actively participate in the decision process.

This is the latest list of med plans available Treatment Recommendations .

Below are some reflection questions to consider when deciding which plan fits your childs needs best.
They might need only a abort or rescue plan of med take only when sick. They might require a daily preventive med plan. They may also need a ER plan or direct admit plan. Consider the following point when talking with your Dr about what proactive plan should be in place.

• How often does my child get sick (daily, weekly, monthly, every 6 weeks etc)
•  When my child is down, how long does that last? (hours, days, weeks or more)
•  When they are sick are they able to still do day to day things 
• can they read books to distract them?
• go to school?
• focus on watching tv?
• are they in the hospital needing sedation or IV fluids?
• Are they able to take bites of food or sips of water as needed 
• How long has this pattern been true?
• Does this pattern impact day to day life? Can they attend school or are they home schooled or home bound? How does the child feel about this? How do you feel about it?
• What would be a realistic goal to set at this time? (we all want no cycles but a reduction is victory enough for many)
• Can you ID triggers?
• If you can ID triggers, what changes can you make to try to avoid them? 
• Have you reached out to support groups to learn what other parents are doing?
• Can you try other supportive therapy such as OT, Cognitive Behavioral Therapy, Chiropractor, Dietary Changes, Exercise to better reduce triggers and promote overall health?
• Consider the emotional and physical toll it's taking on the child and rest of the family.

Read up on options and latest research by going to CVSAonline.org

Dr Li, Dr Richard Boles of UCLA are leading the way with treatment options! With also much gratitude to Dr Fleisher who is now retired....

Its not a one time process but an ongoing one... as our kids grow the challenges and needs change and so will the plan that we make to help them get through the cycles. For some the pain is managable and laying low for a week watching TV in between puking and able to take sips and avoid major dehydration.

Some dehydrate in as little as an hour no matter how much they drank the day before (that would be us). The plan that works today might not work a year from now.. what is helpful is documenting what works and when it does not documenting the specifics to that as well.

Even if you feel like you are back at square 1 with finding a new plan, remember how far you have come...how much you've learned and advocated for your child and keep up the good fight.
You felt so overwhelmed in the beginning.. and for a while you had some peace.. and it will return... Hold tight.

Stay calm and Puke on..... until we find a cure :)

Game On: Considerations in approaching CVS: Choose a joyful path

Do you wage war on the beast or ride out the storm? How you view this battle, can have a large impact ....Can you find or develop a sense of joy in life while throwing up.....and not waging a lifetime of war ...Which leads to sense of victory, which leads to a sense of defeat at each battle that arises? 

So this title might be a little miss leading..or a little confusing ....for most puking is anything but joyful.  However many cvs kids puke, not because of bad thing like stomach viruses, over eating or food allergy. These kids puke because of excitement, and good things that make other kids happy. Most often people think of this nervous stomach, but that is not even close. 

A nervous puker, might puke then feel better, they can be distracted by tv, or redirected by an incentive. If you are blessed to be a parent of a child with cyclical vomiting you might notice that no amount of bribing, incentive or punishment turn it off and in fact those thing make it worse. Its common knowledge the excitement is often a trigger for kids with cvs along with temp changes, lack of sleep, allergies and viral illnesses. Some triggers are more easily managed than others. The excitement is one that falls under the others. 

My husband and I were only half joking saying we should just do away with birthday and holidays here. We know that's not the answer. We were reflecting on the numerous hospital admissions we've had over the last year, his birthday, birth of his sister, older sisters first communion, Halloween and Christmas to name a few ( not all but you get the point ). We've learned to keep parties small and only to immediate family members and just to celebrate with dinner of choice, cake and light up balloons. Yet every birthday ( of any family member does not have to be his) we end up in the hospital...

This is so common place the siblings no long bat an eye about it. They just can't wait to visit him and play with the toys the hospital has.  (well minus the 4 year old who cries when his brother in gone because he misses him and once he visits him and sees he's ok so is he)  Life is exciting! Good exciting or bad excitement it's all the same to a cvs kid. We focus on simple joy and way of being content day to day. Homeschooling has spared us the cycles that are triggered by assemblies, substitute teachers, fire drills and other seemingly harmless excitement in a child's life. 

Sure you'd expect traveling to see family out of state would be one (which it is) but there are soo many exciting things the day that we often overlook.  Joy comes from within. Joyful puking is a state of mind, knowing that this will pass, its just the way your body processes excitement. It's not a beast to be fought, though you might feel that way at times. Emotions just are, excitement just is. How you handle them will determine the outcome (not totally but large enough impact). Work with emotions and excitement,  not against it. Allow feelings to be acknowledged and validated thus released and less likely to become full out trigger. I am not saying cvs is an emotional or mental disorder, it is most likely aggravated by stress of any kind...the joyful puker is one who though he is fighting a battle, consciously chooses not to wage a war he knows cannot be won by those means.  

It's not giving into cvs, from what scientist know at this time there is no cure... So there may or may not be one in your child's life time..... Give them hope, but also give them the tools to pick battles wisely and how to life a life with it. Calming thoughts, assist with regulating emotions both good and bad can help you to become a joyful puker who is one who is not shocked or emotionally defeated by yet again another cycle.....

Life by its very nature is exciting! Children by their nature excite easily as they are filled with awe and wonder as they learn about the world around them. 

They love to celebrate and embrace any reason to celebrate. This is where very often kids with cvs get stuck like a child trying to eat an Oreo and brush their teeth at the same time... It seems very oxymoronic. Child love to be happy and and excited yet for some children this sends the nervous system into hyper drive and miss firing causing a cycle of intense vomiting, light motion sound sensitivity  that only respond to very strong anti nausea meds used by cancer patients or in other cases treated with iv fluids and mild sedation til it passes. Or for some excitement taps all the energy their cells mitochondria have which might already be on or me empty to begin with. So how can CVS kids find peace and joy in this world of excitement? This is where the joyful puker come in.....and how we teach it in our house.

Do these kids need to learn to tolerate them better, yes. Are we sheltering him, Not in the way that one would think. In teaching and increasing his ability to tolerate we need to make sure it is in ways they can succeed which may mean a different standard. A trip to Disney world for these kids might be an absolute nightmare or they could love it depending on their tolerance level and if parents are proactive in avoiding a cycle. As they get older they can learn cognitive behavioral tips oh how to regulate mood to keep a more consistent energy level.

 But any parent of a toddler or preschooler knows how hard it is to get them to bed on Christmas Eve or before the first day of school...CVS parents might fight that battle everyday. Somethings will get easier the older they get and the more positive experiences they have. If they develop quite the history of excitement puking, they will learn that this will pass, and it will get better, and as we've found have a greater appreciation for the healthy times that many take for granted.

To achieve victory, he must do the opposite, he must learn to work with and help its opponent have its needs met to avoid another fight......thus creating a better life for all.                                        ENJOY LIFE ALONG THE WAY!!

 

Ever wonder why your child misses the bucket so often. Think of it this way!

Colleen

There's NEVER been a BETTER time to have CVS!

Among many support groups for Cyclical Vomiting there is very often a loud call for "FIND A CURE NOW" the pressure from parents asking and sometimes begging make this horrible thing go away. I've heard we can send man to the moon but we can't cure cancer, cvs etc. I like to point out that the common cold has affected more people still has no cure as well. So here's my take on why I think there's never been a better time to have CVS diagnosis.

Recently my 10 year old son and I read "The Apprenticeship of Lucas Whitaker" over Thanksgiving break. As a family we are very much into FIRST Lego League, and we were reading this as part of research for next years WORLD CLASS Challenge. Next years challenge is looking at how kids learn in the 21st century. This book came recommended by our favorite librarian friend, as being a great book that was an example of common ways that children learned in other places and in different ways outside of the classroom. You see, Lucas is the sole survivor in his family as the rest have died from an illness had no cure or as far as anyone knew. He stumbles into a neighboring town lost and looking for direction following his mothers death. He happens to find a sign on a door that says help wanted.  lucky he knew how to read, apparently not a common skill in that area. The person looking for the help is a doctor who then take Lucas in as his apprentice.

Why you might be asking why am I  bothering to tell you all this. This simple story of a snapshot of American history and culture is classic and a reminder every parent of a sick child needs to remember. In the historical fictional story, you learn the doctor's sister who used to live in the city,  has an obsession with washing which comes across as a mental condition to Lucas. Why was she making him bath everyday in the dead of winter (keep in mind it was the 1800 when there was no easy hot water heater other than a pot of water and a stove ). This sister was in fact ahead of her time,  having learned about the importance of washing to avoid illness. Today that sounds like a no brainier....but back then it was groundbreaking that it was revolutionary. It was not that people were dumb, bathing was not a practical thing when you consider the evolution of indoor plumbing and such.

It not difficult when you realize that these people were doing the best with the information they have. There was no internet to google a condition, or even a pediatric specialist of these things to take your child to. Personally, I believe many server cases of CVS in these days probably resulted in death due to dehydration. As a parent of a CVS child, you have seen how fast a child who is retching 10x an hour can dehydrate. We are blessed that we can take our child to a hospital by driving our warm cars in the dead of winter to the local hospital maybe 2 hours away or less... There we meet a team of doctors and nurses who though probably unfamiliar with CVS, can easily spot the need for IV fluids, and also have the supplies readily on hand to administer this life saving treatment to our children.This is a luxury many parents at other times in human history never even had the option of.  There has never been a time in history to have CVS.

OK so your thinking, yhea I know we've come a long way but everything has... that's a lifetime ago and I can't relate to that. Let me tell you another story, my story of what it was like being a child in 1980's having CVS. Everyone knew when I threw up I never stopped, and dry heaved for hours to the point of bile and would lay there in what I know now to be call a conscious coma. The doctors never knew what to think when my mom brought me. My parents had a friend who was a pharmacist who recommended Emetrol which only seemed to aggravate the vomiting.  If I was finally to be admitted to the hospital for this which only happens 3x in my childhood, the nurses would tell my parents I was just being stubborn and I needed to stop. They also pushed fluids orally non stop which as you have come to realize probably is the last thing to do during the height of a cycle.

My parents stopped bringing me to the doctor for it and we always rode it out  home which felt like torture. I on some level carried such guilt... why could I not throw up like everyone else? Why would the sound of someone flushing the toilet trigger such horrible retching over and over again? Why could I not swallow or take sips and keep them down like everyone else? The problem must be me...I must be weak or so I'd think to myself every time I got sick.  It in no way saying my parents neglectful at all,they did the best the could with the knowledge they had and the resources available to them. The next time we sought treatment for an episode was in 1991 when my kidneys started to shutdown during an episode.

Thankfully after this episode it seems to resolved itself exept for when big life changes occur...such as graduation from college or after my wedding and even those were mild. Then came our first child and for the first time in my life oddly enough, I could puke and be fine! I realized there's something different going on here.. I can puke and still make dinner and not be down for days. Then our 3rd child was born, and by the time he was 3 I knew he puked like me, but never did I imagine it would progress to the world wind of a thing it's turned into. I knew when he had his tonsils out he needed to have extra IV fluids to aviod a cycle like I did when I had mine out. But it was not until 2012 that this puking thing  had a name, and more than that there were things you could to to help.

So for some the diagnosis of Cyclical Vomiting Syndrome is overwhelming and unfamiliar. For me it was a name to an enemy that plagued my childhood and made me fear vomiting. For me to learn its name and that there was a plan was a time of sheer and utter joy. My son does not have to lay on the floor on the verge of passing out for days, he is blessed to go into the hospital and get the IV fluids and meds needed to stop further damage from being done to his frail and weakened body. He has tears in his stomach from the forceful retching at the tender age of 6. He's been hospitalized over 20x in his life for this condition in the last 2 years alone. Without these hospitalization, I can say with almost certainty that he would have died long ago if had not been for the medical advances today that many take for granted.

When my son ends up in the hospital, I am nothing but grateful!

There has never been a better time to have CVS.

We don't have a cure...and I'm OK with that...Because what we do have is a lot!!! We now know more about what it is as a migraine variant. We have drugs we can give to try to reduce severity and frequency. We also know that if all that fails we can give meds and fluids needed to ride out the cycle! These things are a huge step from 30 years ago! I am just starting to learn the mito component and it again seems like a huge blessing and that we are taking huge steps to a better quality of life for these kids. It will be part of their lives, we can't change that.... what we can teach them is that they can get through this and that we as caregivers will be there to help. We will continue to seek out answers and better ways to help and minimize CVS's interruptions in our lives.

 Til then It's Stay Calm and Puke on!

Drink Drink. We've come a long way in CVS treatments

10 Things Your CVS Child Wish You Knew......(updated)

There are things that CVS kids wish that our caregivers knew. I am blessed to be both a former CVS kid and the parent of CVS kid. My husband on the other hand had no prior experiance with this.. and I'm now learning that there seems to be some common mistakes NON-CVS sufferes make while caring for their children.  CVS is a whole different world and type of vomit....and many well intention parents make rookie mistakes....Here's some things they wish they could tell you:

1. I don't do this on purpose. I get excited about birthdays, holidays, field trip and overnights. They sound like so much fun. But for some reason my body processes this differently. The signal misfires and sets it off. Or for some of us hormones set it off. whatever it is I do not chose this.

2. I don't mean to miss the toilet. The need to vomit and the pain is so intense I can barely move, open my eyes or even listen to your voice.... so forgive me if puking into a towel is the closest thing I can do. Lifting my head it too much for me at times. Thank you for keeping a bucket near my bed and cleaning up my messes.

3. I wish I could swallow my own saliva...between the taste of it from mixing with bile and or bloody mucus I cannot do it. I'm terrified it will trigger more vomit since... well everything does, any sound, movement, touch, breeze is too much for my nervous system. The one thing that would help the most hydration is at the same time the biggest aggravation to this cycle I am stuck in.

4. I may need IV fluid to get me through it. It's not because I don't want to swallow, Its that anything that goes down will come back up. Oral med are the biggest joke if you are actually in a true Cyclic Vomiting Cycle. Its not gonna happen. I may even ask for suppository, or yes even a shot to make this pain and cycle stop. Listen to me. and Help me please.

5. I need a bat cave. QUIET, DARK and NO MOVEMENT! I love a weighted blanket to comfort me. Possibly a white noise machine or fan pointed in another direction. Please don't wash me up right a way, turn on lights, talk to me to see how I'm feeling or flush the toilet near me. Any of those thing will cause me to vomit so chose which you need to do wisely. Once I start it hard to stop...so please just stay near by so I know you are there. I get scared and feel like I'm dying and I might faint. Actually I might wish I'd faint as that would mean less pain for a short time.

6. I'm hot I'm cold. As the urge to puke gets more intense I get hot, blotchy and sweaty. I may throw off covers suddenly. After I throw up I tend to get the chills and shake....and then repeat over and over again. Don't put a lot of clothes on me to keep me warm....just a blanket will do. After I throw up is the best I'm going to feel so only ask me questions at that time. otherwise I'm too busy trying not to throw up to have any energy to answer you.

7. I love you! I hate this just as much as you do. Thank you for helping me through this. Thank you for seeking treatment when needed and not seeing it as a failure or that it is because either of did not try hard enough. It's just the nature of CVS. We will figure this out together. I know you are there to help me. Listen to me when I talk and I promise to do my best to do as you ask.

8. You are my rock. No matter how bad I look, quietly cheer me on. When you freak out, I freak out. So stay calm and then you can freak out later. Take advantage of online support groups so that you don't feel so alone. We may not know too many people near us that have this battle, seek them out. It will help all of us feel more normal and validated.


9. If school is too much for me, that's ok. It is not a failure. It's just an alternative lifestyle. There's never been a better time for homeschooling since Internet, charter schools and co-ops are on the rise in the United States. With some many parents opting for this, we are hardly a lone and it need not be just a curse of CVS, it could be a blessing of it. Check out this video on "hackschooling" its amazing, just look at what this home school kid does. This could be me!Together we can do this!~

10. And remember cycles do not happen all the time (typically) and no matter how many hospital admissions we have which often complicate family events and holidays, we still have a good life.Our life looks different than others.... but I would not change it. I also don't know it any other way. To me this is normal. :)

Welcome to my mommy blog of our journey with Cyclical Vomiting Syndrome!
My son is a second generation CVS kiddo. He earned the diagnosis in June of 2012 after 3 years of "bad stomach bugs". Since then we have come to learn a lot about the condition and life in general. 

He has had over 20 hospital admissions since Dx. Hoping 2014 will be better! We know it will in many ways and in others not....BUT... we know what to do and it goes smoothly anyway.  There is no cure for CVS, but through education and treatment we can dramatically change the lives of hundreds of kids who suffer from this thought to be rare migraine variant. We do all we can to minimize his episodes, take med, homeschool, take preventives, pretreat etc.. but still life goes on it just happens to include CVS!

The Journey to become a CVS Parent...

Wow my kid throws up more than most, wow I really hate when this kid gets tummy bugs that's going around.

Now he's really throwing up a lot and not peeing.. Off to ER. They give this wonder drug zofran and iv fluid and we are home in 7 hours....... wow my kid was in the er.... and he's only 3...

 He's doing it again but thankful I this time they gave me prescription for zofran at home.  Wow my kid pukes so much to need a drug used for cancer patients. Wow he has been to the er more than 2x in his life.(repeat many times) 

Why does light, moving him or taking to him make it soo much worse is this normal? And the drool why can't he swallow his own saliva what's that about?

 Ok this is something! Now he is seeing a GI/Neuro doctors to help. 

We learn of Cyclic Vomiting Syndrome or CVS. This is something different! My kid is not just awful at throwing up!

We need to learn how to use abort technique ( stopping an episode before it starts) . (Yes I am a Catholic and Very Pro Life but the only Aborting I talk about now in my house is about cycles). Yes I say WOW a lot because I cannot believe this has become what my life is lately....I'm learning and getting past the shock and confusion of all this mess.

 GI says the hypersalavating is classic of this CVS thing...as well as sensitivity to light, sound and motion. They say its actually migraine variant. Yes! I'm not losing my mind. Well yes I am, but now I know why! Aborts plan works for X months.

Ok now this changed.....hospitalized over night, not treat and release... then increase to days talking several. Now we have to give him ativan  and zofran combo and starting daily preventatives.

Wow we need a cure this thing now my kids in the hospital a lot and to think I was all worked up about er visit now he's been admitted for 6 days 3 times this year!  I'd be thrilled with simple ER visit and IV that we were treat and released...

Repeat above. 

Go through diagnostic testing endoscopy, MRI, ultrasound, and upper gi if your lucky.... All that all find nothing wrong to explain the vomiting. You learn that this is good thing and what they'd expect.

Getting used to hospitals now....or have been for a while. Get hubby to have FMLA documenting 2 day x month need to care for chronically ill child (or more that he cares for siblings while I'm at the hospital with said kiddo).

Then we do this 4x a month or 2x a month for 4 days at a time. We have made friends with the nurses and pedi hospitalist and sometimes even know who works what days. We have a treatment plan in place to help Dr. who are not familiar with him. 

Each  trip to the hospital is no longer rushing around or stress or even worth a Facebook post.  Its a way of life now.....You come to think a diabetic needs insulin, and asthmatic needs albuteral and neutralizer, cvs kids need iv fluids and med. It all make sense now!  Until we find a better plan of control this is how we live. 

They have not cured the common cold or the headache but like these conditions there are things you can do to minimize and comfort.  Do not knock what I do. You give your child allergy medications when they sneeze, I get mine IV fluids when they puke more than 6x an hour repeatedly.

Medications work for x # of months... Then it changes and feel as helpless as day 1, but your not... You've learned a lot about health care, insurance, schooling, nursing, medications so your actually pretty prepared now.

 Bile and bloody puke does not phase us anymore, We've been dealing with it for x months or years (even when er dr freaks and wants to order test) 

We can calmly say we are the CVS parents, we know the drill, we've done this before, calm cool and collected and hand them our treatment protocol and after a while, (about your 5th admission in 3 months). The hospital staff have come to know you by sight and ask 'ok what's working for him lately'.  The ER teams listen to you and do what is requested 99% of the time. They only double check the med that's prescribed verifying that its ok to use and check with our specialist who confirms its the only thing that works and worth the risks.

You realize the early days were not so bad (but you didn't know it then). You accept now its gonna happen but you can work with the medical team to space it out and comfort til it passes. You got this, we are the CVS Parents! And we have a great network of friends who support you thanks to Facebook and internet support groups. 

Your own friends have still never had to take a child to the ER.... But within our groups its more 'ok how did the meds work this time'  or ""Did they they try anything different?" not 'Omg I don't know how you do it I could never handle that'. 

But we do, time in and time out. Year after year....Generation after generation....each getting better and having more treatment options then the one before...

Your path to get here and frequency and severity might be different but there are common threads for all of us. No matter where you currently in the process you are not alone! 

There's never been a better time to get CVS diagnosis because 

WE ARE THE CVS PARENTS and WE ARE IN THIS TOGETHER.

Colleen Rice

www.rarebutnotalone.com
Rare But Not Alone: Raising Kids with Cyclic Vomiting Syndrome
at Amazon.com
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