Sunday, April 27, 2008

Dealing with CVS…No, not the Pharmacy

Just before Jake’s second birthday he was hospitalized for dehydration after a rather nasty bout of vomiting. You know your nearly two-year old is sick when he hides behind the couch and won’t watch his favorite Disney movie. This episode was the first of many stomach issues for Jake.

Over the next two years, Jake had violent vomiting episodes every four to six weeks. When I say violent, I mean vomiting between 15-20 times an hour for nearly 24 hours. The doctors kept telling me that he had recurrent stomach viruses, yet Justin and I were never sick. It just didn’t seem to add up. After Jolie was born, we finally ran into an old Army doctor that had an answer for us. He took one look at Jake and his record and suggested that he might have Cyclic Vomiting Syndrome (CVS). I went home and immediately did some research on CVS and nearly fell out of my chair. Jake had all of the classic symptoms. His vomiting episodes started at about the same time of day, were extremely violent (12+ times an hour), left him nearly comatose, ended very abruptly, and he had no symptoms in between episodes. Finally, I had an answer to all this vomiting. I was amazed that none of the other doctors, even after all of their testing (blood, urine, etc.), had any idea as to why my son was regularly sick.

We learned how to deal with Cyclic Vomiting Syndrome. Jake would have episodes after stressful situations (Justin deploying), exciting events (birthday parties), and infections (minor colds), so we would do our best to ease into new situations. After our move to central Washington, Jake had a more extreme episode and was again hospitalized for dehydration and an unknown infection. Our pediatrician wanted to “confirm” the Army doctor’s diagnosis by conducting additional testing to rule out any other illness that might be causing Jake to be sick. There is no test to confirm CVS, just other tests to rule out any other illness. Well, you try getting a four year old to have an upper GI, and you’ll feel our pain and frustration about these “additional” tests. As suspected, the doctor didn’t find any other reason for Jake’s recurrent episodes, and further confirmed the diagnosis by stating the direct link between CVS and maternal migraines (I’ve had migraines since about the age of six).

Since we’ve been in Virginia, Jake has only had a few episodes. Unfortunately, he has had two episodes in the last two weeks. Two weeks ago he had a fever and a bit of a cold, which triggered a very mild episode. It had been nearly a year and a half since his last episode, so we were very encouraged that he was coming close to outgrowing them, especially since that episode was so mild.

Well, it appears we were wrong. Friday morning, Jake woke up not hungry (sign #1), and was somewhat lethargic (if you know Jake, then you know that was sign #2). About a half hour after waking up it began. Luckily this time he only vomited about 3-5 times an hour. By about that time he was basically comatose and did not move for much of the day. He is usually fully recovered the next morning, so I was hopeful that he would be back to normal on Saturday. Not this time. He finally requested food Saturday evening (recovery sign #1). This morning he was talking a bit more (recovery sign #2) and walking around. His eyes are still sunk in and he’s emaciated, but he appears to be doing better. Luckily, no dehydration this time.

So what triggered it this time? It looks like it was a combination of triggers. The day before, he had helped me run errands, played some tennis with Justin, and scootered (more on that to come) three miles while Justin and I ran. On top of that, he had chocolate. Looking back, many of his episodes coincided with large quantities of chocolate consumption. We have added chocolate to his list of triggers.

Living with CVS is something we have learned to deal with. We’re hoping that Jake will fully grow out of this in the next few years, but it is possible that he will have to deal with it into adulthood, or that it will morph into migraines rather than tummy trouble.

Last night we discussed what seems to trigger his episodes, and we are going to try avoiding them if at all possible. As he matures, I’m sure he’ll be better able to deal with the stresses of life, and will have episodes that are few and farther between.

1 comment:

Libby said...

When are you all moving? We were planning on being in Pensacola for Memorial day, but Wesley is having surgery the week before it, so I don't think we are going to make it. i think our next trip is going to be 4th of July weekend, and I might stay with my inlaws the week after. I'm so excited to see you all!