So much I've wanted to add since the publication in 2014. Hopefully in F all 2023 an updated version will be released.
Rare But Not Alone, Raising Kids with Cyclic Vomiting Syndrome
Welcome to my personal blog about life with a child with Cyclic Vomiting Syndrome (CVS) a rare migraine variant. Its fun, exciting, and a little bit crazy...and a lot of puke!
Tuesday, January 31, 2023
Revised Edition Coming Fall 2023
Saturday, April 30, 2022
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
Saturday, September 28, 2019
Wednesday, January 23, 2019
Growing research .... 2019 Shaping CVS dx
- 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.
- Mitochondrial disorders- disorders of fatty acid oxidation, MELAS and mitochondrial deletions can cause metabolic crisis and vomiting when fasting.
- Autonomic dysfunction- many also show signs of low tone and meet criteria for postural orthostatic tachycardia syndrome (POTS)
- Hypothalamus-pituitary adrenal axis hyperactivity- known as Sato variant with hypertension and prolonged episodes
- Endocrine (catamenial CVS)- similar to menstrual headaches during onset of period and its treated with low dose estrogen or progesterone.
- Food allergy- Sensitivity to cows milk, soy and egg white protein may trigger episodes in children. This relationship is still uncertain.
- 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)
Tuesday, July 17, 2018
Whats the Weather Forecast?
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?
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.
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.
- 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.
THIS DOES MAKE A DIFFERENCE.
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!!
Saturday, June 23, 2018
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?
- 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.
- At least 5 attacks of INTENSE nausea and vomiting and fulfilling 2 and 3.
- Stereotypical in the individual patient and recurring with predictable periodicity
- ALL OF THE FOLLOWING
- At least 4 attacks per hour of nausea and vomiting
- Attacks last more than 1 hour and up to 10 days
- Attacks occur MORE than 1 weeks apart
- Complete freedom from symptoms between attacks
- NOT ATTRIBUTED TO ANOTHER DISORDER
- At least 5 attacks in any interval, minimum 3 in 6 months
- Episodes of INTENSE nausea and vomiting lasting 1 hour-10 days and occurring at least 1 week apart
- Stereotypical pattern of symptoms in the individual patient
- Vomiting during attacks occurs at least 4 times per hour for at least one hour.
- Return to baseline health between episodes
- Not attributed to any other disorder.
Abstract
Friday, June 8, 2018
Disney 2018! (So what if CVS tagged along I don't care!)
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.
Revised Edition Coming Fall 2023
So much I've wanted to add since the publication in 2014. Hopefully in F all 2023 an updated version will be released. Quick Update An...
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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 t...
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