JACKSONVILLE, Fla. -- I just wish somebody had told me all this information when my daughter had an illnessthat obviously wasn't the stomach flu.
My daughter, Katie, is now 18 and on her way soon to college to a place, which seems to me, a longway from home. That's the good news. She's much better.
But the last two years have been a struggle. The scariest thing in the world for me was knowing my daughter was very sick and not knowing who could help her.
Katie was having vomiting episodes, which would start suddenly, run for days, and then quit suddenly. She would throw up -- at first -- 50 to 60 times a day. Then the episodes would blur together (coalesce), and she would vomit every 60 seconds or so for 90 minutes straight.
I Googled "vomiting" and came up with a dizzying amount of hits. That was no hope.
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She was in the hospital off and on and every test showed nothing. Even her lab work was fine. (I found out that's typical of CVS patients.)
Then, bless his heart, Dr. Fred Guyer at Wolfson Children's Hospital told me he was pretty sure what was wrong.
She was diagnosed with CVS, Cyclic Vomiting Syndrome.
No, I'd never heard of it. I felt alone and frightened. I'll be honest. Why? There seemed to be no treatment. No expert. Nobody to get her back into her life. (She would miss an entire year of school.)
Katie kept telling me, "I just want my life back." We lived every day and every night on IV's. No food. Not even sips of flat Coke would stay down.
Katie is such a spirited, positive girl, though. She has an enormous amount of faith. She prayed. We all prayed. And she hung onto a song someone in her Sunday School class gave her. It was Laura Story's "Blessings." Basically, the words go something like, "What if blessings come through raindrops ... what if a thousand sleepless nights are what it takes to know you're near ... "
I'm sure, parents, you understand the feeling if you've had or have a sick child.
Months later, an ER doctor said to me in the wee hours, "Oh, she has CVS? Haven't you heard of Dr. Perszyk?"
No, I hadn't. Turned out he was right across the street. Dr. Perszyk has been treating CVS for 30 years. And there was his office so close to our hospital room, and I didn't know.
But the recommendation was key to turning around things for Katie.
We went through more IV's, several PICC lines, TPN feedings, an NJ tube in her nose, colon motility tests, and then eventually a G-J tube in her stomach.
That stomach tube, although it scared the daylights out of me at first, was a gigantic step to her recovery.
Treatments for CVS patients vary. So please do not think our experience is the only standard path.
Katie now has the tube out of her stomach but still takes several supplements and medications.
She is back to school and back to eating normally. What a great change!
She used to be nauseated every minute of the day and night. In fact, she couldn't even watch TV because the food commercials made her feel even more sick at her stomach.
Now she loves it when her step-dad and brother grill up their great burgers. But we watch her health carefully.
Here are my resourcesfor CVS:
--The Cyclic Vomiting Syndrome Association website:
Most helpful at first are the symptoms and warning signs of CVS. The website also has specialists in various regions of the U.S.I found they reply to your email questions.
--Dr. Anthony Perszyk, MD UF Pediatric Multispecialty Center
(His office is on Prudential Drive in Jacksonville.)
--Check into info on mitrochondrial dysfunction and CVS:
Cure Mito is a helpful resource. Some experts believe CVS is rooted in a mitochondrial problem.
--Contact me, if you'd like:
Jeannie Blaylock firstname.lastname@example.org
Don't be discouraged. Remember CVS is often misdiagnosed as a psychiatric problem or eating disorder or a hormone problem or just a bad round of stomach flu, for example. We found many helpful and kind medical professional wanting to help but not knowing how.
If you just can't find help right away, at least go to the ER and ask if your child (or yourself) needs fluids. You don't want to become dehydrated.
We wound up eventually getting home health care for IV's. A nurse would come put in the IV and then I would flush it and take care of the fluid bag changes. That situation was more comfortable for my daughter than running back and forth to the ER.
Again, I'm so willing to talk with you if I can help.
We believe from our own experience that, yes, blessings can come through tears.
Katie is a strong, young woman now. As she says, "I think I can conquer any mountain now." Katie relies on her favorite verse from Psalm 61 about being in the "shelter of His wings."
And she's met so many wonderful people along the way -- from the compassionate nurses at Wolfson Children's Hospital to, ofcourse,her hero, Dr. Perszyk.