Crossing into adulthood and starting again

 Just as he is about to turn 18 in couple of months we will start to transfer to adult providers. Thankfully its only Traditional head migraines now.

Luck would have it. His youngest sister just got dx cvs today, but she is milder than he is but still have landed in the hospital 4 times in the last 2 years. Happy Dx Day Cara.

Update. MAYBE dx date. 

Cara had an MRI to rule out other causes and was found to have significant Chiari Malformation Type 1 with Syrinx. She had surgery in December at Mass General and so far, what normally would have triggered her has not both viral and excitement. Time will tell. 

So sometimes its NOT CVS... even when it looks like it and family history.

10 Year Anniversary in June

 Hard to believe it's been 10 years since finally giving a name to the crazy, intense, vomiting! I'm happy to report Andrew did out grow CVS around age 12 and switch to migraines now which are managed at home. We've not been in the hospital since port removal in Fall of 2019. It was an insane, constant state of affairs for 7 years, and now it's a thing of the past that the memories remain, some scaring on the veins probably, and a skewed sense of what constitutes a lot of vomiting.

It's not an exaggeration to say these episodes included vomiting every 3-5 min for hours. Easily 10 rounds of vomiting an hour was the norm. Light episodes it might be 6x hour. Total shut down withdrawal also standard as he'd lay eye closed and hid out in quiet dark room and try not to move. I will forever be thankful for the friends we've made along the way who simple said "You too? You mean I'm not the only on?". It is for all of us I chose to write and share our unique story of Cyclic Vomiting Syndrome.

I'll still be supporting fellow parents on the Facebook group. 

This will hopefully be my last blog post on the topic. 

Rice Family

Chronic illness in the ER

When home med plans fail, often those with chronic conditions need treatments that require prompt medical treatments not handled in the office. Specialists realize this and often write protocol letters listing when to implement treatment and how. Patients present to the ER where Dr are treating more unknown emergencies and dx problems. Issue is .. we are not looking for their dx skills or even their thoughts on our treatment plan. Both ER provider and patients get put at risk when plans are not in place. 

Recently we presented to the ER for our protocol which is one file and flagged and signed off on at our local hospital. This day however this dr either never pulled up said record or was going to a different way. This I understand, it’s on him. However he could have been upfront and honest I don’t feel comfortable with this, what do you think is best next step? If I had thought lesser meds were only option I would said ok but if that’s the case send us now to pedi floor where those who know him can manage. 

Nope they gave standard protocol and then wanted to discharge. I said he needs to pass the can he move without throwing up test. ( I did not say have your staff come in turn on all lights take blankets and yell migraine kid with autism he had to walk around and go home) I said before you take IV let’s see if he’s actually any better than when he when he got here (which he clearly was not). So he was asked talk which he did barely, and then forced to sit up and stand which of course he threw up. 

( side note after 70 ER and admissions both him and I know when it’s manageable at home home based on is he swallowing, can he open eyes, is he asking for food, is his heart rate below 100, what is his skin cool, and he motion with his fingers pain scale) he communicated all those things without being made to move.

Upon throwing up they handed him off to pedi team finally. Nurses asked why don’t we go to Boston hospital since they treat him. Well this local hospital has successfully treated him for 7 years here. All the pedi staff know him ( knowing he’s good to go when asks for ceremonious cheeseburger and chocolate milk indicating episode is over) why would I want to travel an hour for a staff that has no working knowledge of him?

In the end we were advised again when arrive to request pedi hospital staff to order manage his care. Updated files sent and hopefully next time will be better. I’m thankful we have a team that after 7 years will still go to bat for us and say to others we’ve tried that for years first hand we know it doesn’t work and requires this. We know if you do xyz mom is correct just send him to be admitted. Please help us help them and save us all time and frustration. 

There are those who do get it and those who will advocate for chronic patient care. It involves ER dr who really are needed elsewhere helping those who don’t know what’s going on..or those still searching for treatment plan. I do appreciate ER teams are treating high numbers of patients many psych and addiction cases who are dumped in ER as place to find help but that’s a whole other topic in itself. Let’s streamline chronic kids needs enabling them to stay close to home, and be treated by a team who become like family which removes a level of unknowns for both patient and providers.  

O

Growing research .... 2019 Shaping CVS dx

GROWING RESEARCH TREND 

ABOUT CYCLIC VOMITING SYNDROME

        According to Up to Date Cyclic Vomiting Syndrome (B UK Li) Updated March 2018  there are 7 emerging parthenogenesis that are emerging as a result of the last 10 years of study in over 70 published studies. ( Document by subscription or ask your child's PCP for a copy of it. below is just  highlights)

1. CVS and Migraine-  many have strong family history of migraine and progress to migraine as                                 they get older. about 80% of children respond positively to anti migraine therapy.
2. Mitochondrial disorders-  disorders of fatty acid oxidation, MELAS and mitochondrial deletions                             can cause metabolic crisis and vomiting when fasting.
3. Autonomic dysfunction- many also show signs of low tone and meet criteria for postural                                         orthostatic tachycardia syndrome (POTS)
4. Hypothalamus-pituitary adrenal axis hyperactivity- known as Sato variant with hypertension and                            prolonged episodes
5. Endocrine (catamenial CVS)- similar to menstrual headaches during onset of period and its                                     treated with low dose estrogen or progesterone.
6. Food allergy- Sensitivity to cows milk, soy and egg white protein may trigger episodes in                                          children. This relationship is still uncertain.
7. Chronic Cannabis use- Cessation of prolonged high -dose cannabis has been associated with                                    episodic vomiting suggesting a casual link ( THIS IS NOT TOPIC FOR                                        THIS PARTICULAR POST AT THIS TIME)

  These differences can make a difference and knowledge can help choose appropriate treatments.

             Meeting basic criteria is the foundation piece of leading to better treatments and a cure. Patients need to understand the criteria and discuss with their providers what might be their underlying parthenogenesis. If you do not meet the criteria you might another condition or similar one not mentioned that MIGHT respond to similar treatments.

              Adults see this more than kids currently... patient says they have CVS and do not fit the dx criteria.... and Dr know this ... and tell patient CVS is not real.... Well CVS is real .... the question is ...... IS IT THE CAUSE OF YOUR SYMPTOMS you are presenting with...given your presentation, and other related conditions..... Some Dr use CVS as a distinct condition... other use it for any intense vomiting or pain that they cannot explain.  Hopefully new studies that are currently underway will clarify this ... In the FALL 2018 or early 2019  this is to be clarified with new adult guidelines being published with the help of Cyclic Vomiting Syndrome Association.

Hopefully for adults these clarifications and proper use of them will lead to better quality of life.. But again not all intense vomiting or intense pain is CVS.

Whats the Weather Forecast?

What's the Weather Forecast? 

Reflection on how to track and describe episodes

Like most people, you probably check the weather forecast to see what it'll be.
Maybe you have a beach day planned..will it get rained out? Or maybe its winter will there be a snowstorm with enough to cancel school or just  a little not even plow-able.

Reasonable questions to ask right?

However when it come to describing our child's cyclic vomiting syndrome sometimes many people speak only in generalizations which are not helpful. One parent might say "oh my child has been in an episode for over a month" while another might say this is the 3rd episode this month
 So which is more accurate... 

Well it all comes down to the hourly forecasts :) and breaking down the length of peak level vomiting nausea and pain which is considered severe, functional / impact and recovery times.

Back to our weather analogy. The forecast says 90% chance of snow on a given day. So that means odds are you are going to see snow. WHAT IT DOESN'T SAY IS HOW MUCH OR HOW LONG. Wouldn't you really need to know more?

YES you'd need to know if it a snow squall that going to come and go all day and be annoying but not majorly effect your day (similar to needing maybe light recuse meds but still able to participate in some day to day activities, walk talk and have breaks of where they are able to intake fluids and bites of food).

Or if say its a blizzard and you will be home bound and limited to house and be prepared for power outages (Intense vomiting and nausea that has no breaks no fluids get in no food goes in and often requires hospitalization, there is no regular functioning at all during these storms)

You might start off a day with the squalls and then gear up to a full winter storm... have a lull and it will start again. It's IMPORTANT TO NOTE the AMOUNT OF TIME IN EACH PHASE  (Peak) / Recovery (mild  to moderate) and not just say... oh it snowed all winter.... because unless it literally did......and you have 30ft of snow outside your door... YOU ARE MISSING KEY INFORMATION to share with providers. Its not about comparison of one child is worse than the other. In medical field doctors help us better with the more accurate detailed descriptions we give them. We are the witnesses to the events and our observations matter.

There can be as mentioned before in other posts yo-yo phases or cycle within a cycle.... when you think the episodes is over and then withing 1-3 hours it starts all over again.  The actual breaks here are not long enough to maintain hydration or nutrition. Dehydration is still a big risk.

Oh this episode lasted 24 hours ? 

Imagine an episodes that only last 3 hours (meeting the peak rate of 4x hour vomiting and then gradual decrease over time) and then maybe 2 hour recovery and the rest of the 19 hours of the day being able to function take in fluids etc.

Another person might say oh the episode lasted 24 hours and mean the active vomiting phase (meeting dx criteria or more per hour ) lasted a full 19 hours with a 3 hour recovery.

DID BOTH EPISODES LAST 24 HOURS?

• the first was actually only 5 hours... if the person starts getting sick again the next day... 

                                                    IT IS A DIFFERENT EPISODE

• The second example the actual episode lasted 19 hours, if the person starts getting sick again it's possible that its the same episode the length of the active phase was so long.

When speaking about Cyclic Vomiting Syndrome it is very important in the early days to track the rate per hour of active vomiting and pain levels. This information is a clue about the intensity and nature of the episodes. This helps dr to take us as a community seriously when we use a common vocabulary and have a common understanding of the condition ourselves. 

I might say oh my son has been throwing up all morning meaning 30x in the past 5 hours and you might say the same thing and mean 5x in the last 5 hours.  
                                             THIS DOES MAKE A DIFFERENCE.

Being that CVS is a diagnosis by exclusion it might mean that its a misdiagnosis.  Watching these subtle things can help plan intervention and get to the cause of the episodes. It is common that later children are dx with other conditions that look like CVS.

IN REALITY WHAT DOES THIS LOOK LIKE?

                     On our trip there were episodes avoided most of the week. I would not say he was in a week long episode. Did he get sick on the trip yes.. he showed signs everyday and took meds daily to keep it at bay..... we enjoyed 90% of the trip.... the last day he did end up unable to function at the end and landed in 3 hospitals in one day. The start of the active retractable vomiting the mark of the start of that episode and lasted til he was able to eat or drink which was 24 hours...

We were able to fly home the following day... and 24 hours later he started all over again and yet again ended up in the hospital... It was still the same trigger... excitement from the trip....but it was 2 different episodes in a short time. Given the situation.... We really LUCKED OUT as it could have been a non-stop one that never responded to meds. We could have ended up with an additional week long stay at Nemours....
                                        Instead I say we  had a VICTORY Over CVS!!

What if my child is diagnosed CVS and NEVER has had severe nausea 

and vomiting to the level mentioned?

If your child mild vomiting that always stops once the stomach is empty, is able to go to school through the pain and nausea, plays and stops to throw up and keeps play?

Couple of things:

Could be the early ages of CVS that might progress over time.

Could be more what international headache society describes as  recurrent GI disturbance 1.6.1 which does not have to have the severity but has common patterns and triggers etc. 

Most of the treatments are similar for both. With the Recurrent GI disturbance (RGID) hospitalization, IV fluids, and sedation are rarely needed.

(in process of being updated 1/16/2020)

What makes Cyclic Vomiting Syndrome Different?

• My child throws up once a week in the early morning... He only throws up 4x between 5am-8m Why?
• Every time my child gets overtired they throw up overnight a couple of times..why?
• My child throws up every couple of months in the early morning and then recovers in hours and no one else ever is sick...what is this?
• My child throws up so intense and pukes 5 or more time an hour  for several hours cannot keep fluids in and keeps ending up in the ER to stop the vomiting... Why?

There are hundreds of reasons why children throw up in childhood. Some have sensitive gag reflex, food allergies other, stress, eating too much, viruses, enlarged tonsils or even a developing digestion system....

So what makes CYCLIC VOMITING SYNDROME different??? 

They key diagnostic criteria that sets it apart from all of these is THE INTENSITY. 

According to Rome IV criteria 

• Occurrence of 2 or more periods of INTENSE, UNREMITTING nausea and paroxysmal vomiting LASTING HOURS to DAYS within a 6 month period.
• Episodes are stereotypical in each patient
• Episodes are separated by WEEKS to MONTHS with return to baseline health in between.
• AFTER appropriate medical evaluations, the symptoms CANNOT be attributed to ANOTHER CONDITION.

International Headache Society (ICHD-III beta criteria) describes it as :

1. At least 5 attacks of INTENSE nausea and vomiting  and fulfilling  2 and 3.
2. Stereotypical in the individual patient and recurring with predictable  periodicity 
3. ALL OF THE FOLLOWING
1. At least 4 attacks per hour of nausea and vomiting
2. Attacks last more than 1 hour and up to 10 days
3. Attacks occur MORE than 1 weeks apart
4. Complete freedom from symptoms between attacks
5. NOT ATTRIBUTED TO ANOTHER DISORDER

North American Society for Pediatric Gastroenterology, Herpetology and Nutrition (NASPGHAN)

1. At least 5 attacks in any interval, minimum 3 in 6 months 
2. Episodes of INTENSE nausea and vomiting lasting 1 hour-10 days and occurring at least 1 week apart  
3. Stereotypical pattern of symptoms in the individual patient
4. Vomiting during attacks occurs at least 4 times per hour for at least one hour.
5. Return to baseline health between episodes
6. Not attributed to any other disorder.

What other features that distinguish CVS from other reasons for vomiting....

Or another chart that compares chronic vomiting vs cyclic 

Is it still Cyclic Vomiting Syndrome

 if it meets some of criteria but not all?

LINKS TO MEDICAL INFO REFERENCED ABOVE

1. fleishers-empiric-guidelines.pdf (cvsaonline.org) 2008
2. Sept07VenkatasubramaniArticle.pdf (ficomputing.net)2007
3. Managing cyclic vomiting syndrome in children: beyond the guidelines | European Journal of Pediatrics (springer.com) 2018

Childhood periodic syndromes. Click link to full medical journal article. 

Cuvellier JC1, Lépine A.

Abstract

This review focuses on so-called "periodic syndromes of childhood that are precursors to migraine," as included in the second edition of the International Classification of Headache Disorders. Presentation is characterized by an episodic pattern and intervals of complete health. Benign paroxysmal torticollis is characterized by recurrent episodes of head tilt, secondary to cervical dystonia, with onset between ages 2-8 months. Benign paroxysmal vertigo presents as sudden attacks of vertigo lasting seconds to minutes, accompanied by an inability to stand without support, between ages 2-4 years. Cyclic vomiting syndrome is distinguished by its unique intensity of vomiting, affecting quality of life, whereas abdominal migraine presents as episodic abdominal pain occurring in the absence of headache. Their mean ages of onset are 5 and 7 years, respectively. Diagnostic criteria and appropriate evaluation represent the key issues. Therapeutic recommendations include reassurance, lifestyle changes, and prophylactic as well as acute anti migraine therapy.

WHY DOES IT MATTER??

It matters to the families who children do have this intense vomiting that does not respond to basic medications (over the counter or zofran) , taking sips of fluids and end up being sick for days unless seeking treatment. 

It matters when we tell ER staff he or she has been throwing up all day meaning more like at least 4 more more in the first hours and then usually it increases to more like 6-10x hour there after ... so easily an episode is 50x a day if medications don't work. Sound extreme? Like exaggeration? Its not ... its the truth of Cyclic Vomiting Syndrome and fits the criteria currently established last updated in 2008 to distinguish it from other vomiting/ belly pain conditions.

It is important to be clear when talking with medical providers what "all day" looks like... 2x in the morning and 4x at night is a very different than CVS episode. This type of vomiting or rate of 1x an hour is more consistent with abdominal migraine presentation or chronic vomiting.... 

Do you see the difference? Its not to say that vomiting 4+ times an hour for multiple hours is any worse than the unrelenting pain. (Honestly I think abdominal migraines are harder to deal with  because dr never know what to do with that... vomiting they are quick to act to prevent severe dehydration.... but pain not so much).

If we want to be the best advocates for our children knowing the difference helps us to communicate the situation better.  If the medical team is not familiar with Cyclic Vomiting Syndrome they might look up basics and the criteria to review....

 What happens when you come in and claim it CVS and don't fit the criteria....

1.. The ER staff might assume its just a variation or mild form....

                                                   or

2. The ER staff might just think you have a doctor who just dumped all unexplained vomiting into this rare diagnosis to give you a condition or billing code for your  records to document .

                                                    or

3. They might just say again you were internet diagnosing yourself.. and thus odds are its just a virus... or a kid who ate too much chocolate cake. 

            If we are going to HOPE for a cure... we have to have an idea of WHAT it is we are trying to cure one thing at a time.... We might get lucky that one type of treatment will help both conditions but odds are these distinctions matter. The more specific we are about what a condition is the easier it is to study it and try specific treatments based on similar presentations. 

EVERY KID IS DIFFERENT .....AND A MILLION TYPES OF  VOMIT ONLY A SMALL PORTION OF KIDS WITH INTENSE VOMITING HAVE CYCLIC VOMITING SYNDROME.

CVS is no longer considered to be rare anymore!! 

Still only 3-5 % of children suffer with it. 

In our family we have all kinds of kids who puke... One who when younger could throw up early morning couple times a week, it was challenging and annoying as well heck... yup... for that one it was enlarged tonsils triggering the gag reflex... It lacked intensity despite its's stereotypical onset and duration...Getting his tonsils out and age help that child stop the puking. This child still puked in foreseen ways after that.... seeing gross things in the trash continued to get him sent home from school at least once a week for next 2 years....

My CVS kiddo on the other hand was always an intense unremitting vomiting type.. Once he started I knew he would not stop and it resembled something you'd see on an episode of House. No stop retching to the point of brown/ black slimy goo coming out even after they put in IV and gave zofran.  At age 3 was his first hospital stay for dehydration...He had been in the ER had fluids went home and it still continued so we ended up returning hours later because the vomiting still had not stopped. He didn't get dx til age 5 when even getting zofran around the clock for 7 days it was still ongoing...

I have another child who I swear at age 13 has thrown up maybe 4 times in her whole life...... 4 times period if they didn't look alike I'd wonder if she was really related to them :)

Even on our first Disney trip in April ... out of 6 kids 3 of the ended up throwing up on the trip.... One had motion sickness and might have thrown up average 4-8x a day but was other wise totally fine.... Another only threw up the first night there... maybe about 6x overnight...his history is the excitement factor..(usually he just spikes 102 fever for few hours when traveling this time he decided to throw up a lot) Neither one of them have CVS.... those vomiting episodes though stereotypical for them under certain conditions etc... and a lot of vomiting still lack the dx criteria to be considered CVS and even with family history.... IT'S not all CYCLIC VOMITING SYNDROME 

So what does this mean for our Cyclic Vomiting Syndrome Community?

To use the term Cyclic Vomiting Syndrome..... I hope that all of your can say that your child has met the intensity of vomiting piece of 4x+ an hour for at least an hour. I know with medications use we can get it to less than that...sometimes.... But the HALLMARK to CVS is the intensity of the vomiting and unrelenting nausea.. which often leaves children lying on the bathroom floor unable to move or swallow their own saliva..... If your child is walking and talking eating and drinking in what you consider the peak part... its not CVS.

Mild CVS  would refer to those who's intense episodes are 3-4x a year... and respond well to medication, or short in duration (couple of hours not days).

Kids with ongoing dull or moderate belly pain that never seems to leave is more an abdominal migraine and looks different... And yes a child can alternate between both types of episodes... but knowing the difference... helps communicate better.... and medical teams to trust us and know we understand the conditions we are helping our children live through. 

From age 4-9 my son had vast majority Cyclic Vomiting Syndrome type of episodes and a handful of abdominal migraines thrown in there.....Around age 10 he began transitioning to traditional migraines with a couple of Cyclic Vomiting Episodes thrown in there as well.....I tend to keep track of the differences and how many of each type he has so that we can work with his Neurologist to design a plan that knows how to respond to each type.... and we do treat them differently with 2 different med plans of how to respond to them. Knowing his factors are key to leading to a cure or better management to his vomiting episodes given his presentations and underlying related medical conditions.

Vomit is NEVER FUN for parent or child. 

But I'd invite you to look hard at the criteria and talk with your medical team how much your child's vomiting fits the criteria. Do they have abdominal migraine type or cyclic vomiting type?

Not every diagnosis of Cyclic Vomiting Syndrome given is a final diagnosis... often in children its a working diagnosis until other reasons can be sorted out through either time or further testing....What tests should be done will be topic for next post in the coming weeks.

THE END GOAL OF ALL THIS

 IS TO HELP AIM TREATMENTS 

TO AVOID THIS THE BEST WE CAN

Disney 2018! (So what if CVS tagged along I don't care!)

Yikes I can't believe its been almost a year since I last blogged.... We started homeschooling 2 children and are now expecting number 7 in October. So its been a very busy year.  I'm still very active in offering daily support on Rare But Not Alone Facebook group.  You can almost always reach out to me there.

We had an amazing fall. We went not hospital from June 2017 until Jan 2018!  Imatrex has been amazing in our avoiding needing IV's!

In April we had a rough month 2 hospital stays.. one triggered by an amazing thing. WE WENT TO DISNEY WORLD! We have planned only to stay at the hotel a day before we got on the Disney Dream Cruise ship (figuring low key Disney no lines or crowds and easy access to the room).  We decided to go into Magic Kingdom for the day!! It honestly was one of the best days ever. I could not stop smiling the whole time.

When we first got there we headed straight to the ride Andrew had been waiting to go on for YEARS (thank you You Tube) Haunted Mansion.  The wait was only 40 min! There was plenty to see and do in line and people did not crowd you in like I had feared... He LOVED IT!!! After that we were free to do whatever but I was not able to go there and have him miss out on that.

CVS eventually hit the LAST day of the trip when we were suppose to fly home. It didn't just hit him by myself as well. We ended up in the ship infirmary, local hospital and eventually transferred to Nemours in Orlando (HIGHLY RECOMMEND THEM TAKE UBER TO GET THERE THOUGH) We made it home a day late.  Yeah we ended up right back in our local home hospital once home... but we were HOME.

In all this mess we finally decided a medi port is a MUST.  2 of the stays it took about 10-16 tries to get an IV in delaying medication getting in for up to 4 hours... So next month the Port is going in!!

I've been reviewing a
lot of new research on CVS! There's lots of new things to share. I am hoping to have another blog entry about that over the summer. The kids are in school til..... June 22 here.. It's a New England thing.

Going with the flow of Cyclic Vomiting Syndrome.

"It controls your life."
"You never go out anywhere."
"Why won't you do this ....or that....".
"Live your life.... You are just bringing this on yourself... by anticipating it...and thinking about it all the time.."

Many people who suffer invisible illnesses hear these things often.
 I'd love to say I was over reacting..But my life is not the same as theirs.....They do not see what I see or deal with what I do.

But time in and time out I've experienced the patterns that go along with Cyclic Vomiting Syndrome. There's a reason its call CYCLE... it actually has 2 patterns ... the patter of how it presents... AND the pattern of spaces between episodes.

I count it as blessing that I have been able to develop a sixth sense about when it is about to happen. Others may not see the warning signs or miss the triggers that are screaming to me to WATCH OUT, BE PREPARED, TAKE COVER NOW.

Would you ignore the tornado warning on your TV because the weather is fine when you look out the window. No that would be crazy. You would realize that there are people trained in this area who's job it is to keep you safe. You would seek shelter and wait for more information. And just like the weather, CVS changes and has so many factors that come into play.

Like weather forecaster, I am parent who is weighing risks all the time. If we know a cycle will land us in the hospital (and the large medical bill that often goes along with it), of course we would do as much as we can to avoid it.

Many of us have learned the hard way.... what things set off the cycle such as crowds, cake and gifts which naturally create excitement, or certain foods like cheese, gluten etc. I've never been to a children's party where the goal was to not be fun or exciting. Its a childhood rite of passage, the friends, the parties, the playdates.

To many cyclic vomiting syndrome families, everyday childhood joys feel more like a crossing a field of unmarked land mines. Which ones will trigger a cycle? How long will it last? Will the home medications work? Will I have to take them to the hospital? Will the ER understand why its "not a virus"?

We often celebrate in different ways spreading out Christmas gifts, or making sure that vacations are closer to home. We are going to help them celebrate in ways that they enjoy and does not make them sick. It's different then what others do or how others live...... and THAT'S OK!

Sometimes its hard not doing what everyone else thinks you "should" be doing. But honestly, its helped us to get creative and find better ways. So we have special family meals with cake for birthdays and not the large parties that invite my child's whole class over for games. We may invite 1 special friend to go rent a movie and camp out in the living room? If it ends with a wonderful memory and does not include a puke fest after, we succeeded.

We are doing out best not to bring on a cycle. Life is exciting, no matter how you look at it... so its our job to keep that excitement at an manageable level to keep the puke monster away.

We know that we cannot outsmart it every time... but we are not going down without a fight. We will work with what we have been given to make the best life possible.  Knowing your enemy is a better approach than just heading off unarmed into a battle you should have been coming.

Our life might be different. But it's our life and we will live it to the fullest in our own way. So next time you want to question me about why I do what I do... please think....

My Unseen Journey

Ever wonder what your child might be thinking while going through a Cyclic Vomiting Syndrome Cycle?  IT's SO MUCH MORE THAN A VIRUS.
 

 And my CVS adventure begins. It feels like a bad dream but its real and no one know how bad its going to get.  Those around me only see some of what I am going through. Sometimes these episodes are short... others last a long time. Sometimes I stay home and other I end up needing help from the hospital. From the outside it looks like I am just laying there and throwing up a lot. But on the inside its so much more than that. 

  

It starts as most of my adventures or cycles do. I find myself suddenly in a dark cave with a fire breathing dragon breathing down my neck. The heat is increasing every moment and just when I think I cannot take anymore, it hits. The vomiting. The dragon is no longer breathing on my neck but rather is hitting my stomach with his tail over and over again. I throw up about 4 or 5 times....before my mom is able to get to me. 

The dragon take a break from hitting me with his tail for a little but he has left me dangling on a ledge in the froze side of the mountain. I'm freezing with chills and shaking,  No matter how many blankets or gear I have on I cannot stop shaking. But it wont last because I know the fire breathing dragon will be back any minute to heat me up again. And so it’s the dragon and trying to climb to safety and back and forth for what seems like forever. How long has it actually been? Probably only about 15 mins or so when I look up to see the clock.  

  

My mom brings me my medicine which  brings me back to reality for a min or so. "Here honey. Here's your meds. Remember they just dissolve on your tongue. Nothing to swallow its easy." 

I do my best to trust her and take the medicine. I muster up whatever will power I have to take the small pill that dissolves in my mouth in hope it will bring relief. I  know sometimes it works and tames the beast.. and others it does very little. Which it will be today... I will have to wait and see. 

Every 3 mins, 5 mins, 10 mins I throw up. After only been an hour and I've lost count. There's nothing left to throw up... but my body thinks there is and it keeps trying too. There's nothing left to come up but my stomach itself. Mom tells me that's called retching. What ever you call it, it hurts and I'm dizzy.   

"I'm do not think its working mom. It really hurts." as I attempt to  runs to the back to the bathroom.  

Each time I try to make it to the bathroom. I do not see the 15 feet it is from my bedroom. Instead I see a battlefield of landmines, and creepers standing in my way. It feels like its 15 miles or worlds away. Sometimes I make it. Sometimes I crawl. Sometimes I cannot even lift my head. At this point after having made this trip about 6 times I cannot do it anymore.. and I just reach for a towel or bucket which ever is closest. I have no energy to make it on my own. 

Trying to puke in a bucket is like a game as well... how on earth am I support to get it in....

"Want to try a bath I know it helps sometimes?" Mom asks me. I quietly agree and she helps me into the tub. 

 I now imagine my adventure includes crossing an ocean.  When I start out and board my boat, the seas are somewhat calm. Its peaceful and reminds me of the summers on my grandfathers boat. We would fish and swim up at the lake. It was always one of my favorite things to do. Then without warning I see a Tsunami or large wall of water heading my way. I want to run but I cannot get anywhere in time. 

 "Thomas,  I think you need back-up. The meds did not work and you are still throwing up. I hate to say this but I think its time."  

I can only lift my head lightly and nod. I know what she is saying. It's off to the hospital. I have a love/hate relationship with that place. They have needles and I HATE NEEDLES. But they have IV's and I know that’s one of the only things that can stop the vomiting and save my whole mission. I know it well I've done this several times before.  

"Want your Spy Goggles?" Mom asks me. Yes I do. Its actually a eye mask that keeps the sunlight out of my eyes. Sometimes even light can make the vomiting worse. We've been doing this a long time so we have many tricks that help me. Sometimes I believe it’s a high tech computer screen that shows me secret messages on how to get me where I need to be.  

"I've got your gear all packed and ready to go with us" Mom reassured me as she carried me out of the car to the drive to our local hospital. By gear, my mom means my weighted blanket I imagine is bullet proof shield, candy canes that can hide the worst of tastes that my stomach might throw at me. I'm still wearing my spy goggles to block out the light.  

"The car is already to go" mom quietly whispers to me a few minutes later. The Car. Oh I hate the car. On a normal day they are great. But on a cycle day.. they feel like a horrific roller coaster I want to get off of. I am secretly working on a better form of transportation.... someway to move without moving.....  When ever I move it brings on the vomiting even worse. However if I want to complete my mission I have to push through to the end destination.  I continue to throw up the whole car ride over. I think it takes about 10 min but it feels like hours.  

Once we get there I find myself in a barren dessert. I am exhausted from the journey so far...add a new feeling though .. I want a drink of water soooo badly..... I would do anything to be able to have a drink of water. Hard things is as much as I want it.. my body is convinced that it is poison and to get rid of it. I open my eyes briefly to see who is my tour guide or nurse on this leg of my trip.  

 My mom checks us in with our secret code word, CVS. The nurses do not know the code and look at my mom oddly. But that’s ok mom is a wonderful teacher and will help them to understand what I am going through. She should.. shes had enough practice at it.  I know what CVS is...Its Cyclic Vomiting Syndrome. My doctor told us that's what we should call it when this happens to me. He told us that it’s a rare medical condition that only 2% of children have. Its thought to be a type of migraine.  

  

My mom speaks a strange language, she calls medical speak. I hear the typical words "extreme emesis" "conscious coma" "dehydration" "Retching" and the ever faithful sigh "Its not a VIRUS". Thankfully they understand and move me to another room when they are able to get my lifelines going.  I used to be afraid of needless... but I've had them enough at this point that I know that they are worth the little pain they are going in. I imagine its super hero serum that's boosting my energy, but mom tells me its just water solution called saline. Whatever you want to call it, its finally helping me come back home from my journey.

When it finally over and I know I've won, I open my eyes to see my mom and dad asking if I feel better. "you look so much better now" they tell me. "the rest must have helped" I stop and laugh to myself what rest? I've been on this insane, painful, exhausting journey today. Its funny how they do not see it. All they see is the vomiting and the "sleeping". I wish they knew. I wish they could see what I go through. What it feels like.  

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Some days it feels like life is passing me by...and in some ways it is going on without me on some days. But its not all the time I keep reminding myself.  The life I lead may be different, but its not all bad. As long as I am not alone, and have the support I need, I am able to accomplish my missions.  The goal of all my adventures is the same, To Stop Throwing up and Make it through the day. Many kids with Cyclic Vomiting Syndrome share in the missions everyday. Most of the time people think its all in our heads... and in someways it is. It’s a real medical condition that occurs in our brain. We would never do this for fun.... because its not. We do better with getting through it when we imagine we are on these incredible adventures that no one else can see.

We are RARE, But We Are NOT ALONE!

CVS kids are not weak. We are STRONG.

Colleen Rice

Rare But Not Alone

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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.