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!