The Journey to become a CVS Parent...

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

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

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

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

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

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

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

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

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

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

Repeat above. 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Colleen Rice

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