Tuesday, April 05, 2011

Cyclic Vomiting Syndrome = random days of blah

We received the official diagnosis about two weeks ago. After ruling EVERYthing else out, the doctor told us that Lillie Anna does in fact have CVS. She may or may not out grow it.

So, let me tell you what this is not...
1) It is NOT a food allergy - she's been tested for every possible allergy and everything has come back negative.
2) It is NOT contagious - Lillie could throw up all over you and you will not catch a thing from her!
3) It is NOT something she can control nor will it ever be (although it is something that we can try to prevent).

This is what we know...
1) There are triggers (travelling, change in routine, certain foods, changes in weather, etc). For each person, the triggers are different and with Lillie being so young, it is very difficult to figure out what is causing the cycles. We know for a fact that travelling is one of them - each time we've travelled in the past 6 months, she's become violently ill.
2) There are medications that can help to prevent the cycles. We tried one and it made Lillie belligerent (that's actually putting it mildly, this video will show how she was acting after just two doses), so we're waiting on Plan B.
3) Each time something "triggers" a cycle, her body develops a type of migraine which sends signals to her stomach to vomit or have diahrea. We now know this is why she developed her Oral Aversion...the poor girl was battling nausea so much that she developed an aversion to food.
4) Average range of a cycle is 1-4 days. The point being, she will not just throw up once or have one bout of diahrea, it will be cyclical.

Overall, she's been doing well. She's gained 4 pounds after coming home from the hospital, despite having several very short cycles. I believe she got much worse while she was in the hospital because she was in a new place, a new environment, with new people and very off her normal "schedule". It scares me to think what might happen if she gets significantly sick again, because if she has to be hospitalized, I fear the same thing may happen. So, I'm going to put that thought out of my mind and hope that we never have to cross that road again. The GOOD news, is that now that we know what is going on, she will never have to go through a series of tests again, and hopefully if she does get dehydrated, they will just give her an i.v. and then we'll be able to go back home where she feels the most comfortable.

I recently found the Cyclic Vomiting Syndrome Assocation website which offers helpful resources as well as a forum where families can share information. And as I've researched, I've discovered that this is NOT that rare. You can click on this link to watch a video by Chandra Wilson on The Talk,...she shares how her daughter was recently diagnosed with CVS.

After church on Sunday, another cycle was triggered and Monday she was very ill...vomiting, diahrea and a LOT of dry-heaving. This morning she woke up MUCH better, but as you can see from the pic below, she's tired. SO, we're learning that it could be worse, but this is not an easy road. It's going to be a process of learning what her triggers are and doing our absolute best to avoid them. We're trying very hard to lead a normal life despite her diagnosis. I usually don't even want to talk about it with my friends because just dealing with Lillie's symptoms alone is exhausting, much less talking about it with people. Which is why I'm writing this blog post - so everyone will better understand what we're dealing with, and know if I don't talk about it, it's simply because I don't want to dwell on it. I'd like to deal with each cycle as it comes, and then move on with life.

For those of you who have continued in your faithful praying, thank you! If you think about it, please pray that we will find a successful treatment, one that she responds well to! As I said earlier, Lillie is doing great in between cycles and the past several that she's had have been short lived which is definitely something to be thankful for. Thank you again for your continued prayers!


Jamie said...

That picture (while a very nice picture in quality and color!) made me want to cry!
Love that funny little monkey! She cracked me up with her funny faces the other day! I look forward to the day when she is telling the story of her healing, and God's beautiful faithfulness and perfect timing in the matter.
Love you guys.

Michael and Hannah said...

Wow... on one hand I can't imagine how difficult it must be for you as a mother to see your baby girl go through this again and again and have no power or control over the situation. But on the other hand, the diagnosis eliminates the possibility of a life-threatening disease. I'm praising God that Lillie Anna will live a long happy and blessed life, and grateful that God gave her the best parents possible to help her deal with her difficult circumstances. We love you LA!