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)