The Power in a Name

I remember going to the OBGYN, year after year. Always presenting with different, yet troublesome symptoms. For six years, I was told nothing was wrong with me. But I will never forget the day a doctor looked at me and said PCOS. In putting a name to my symptoms, I suddenly had hope. My concerns were validated and it was an empowering experience. All this, because my symptoms were given a name.

So we gave Alex's feelings a name. Worry. We've also talked about what worry can do to your body.

And I did get one very useful piece of insight from the last book I read. It talked about "worry" vs. "planning". Worrying consumes you with dread and what-ifs. It serves no purpose, it doesn't change the outcome and it often exacerbates the cycle of anxiety. Whereas planning is a proactive alternative. You anticipate something that may happen and prepare for it. And once you have planned for the what-if, the need to worry no longer exists.

So I talked to Alex about this. She had a school play coming up and we were all really nervous about how she'd do. She was most concerned that she would get sick either at the play or on the way. She was very, very consumed with worry. So we talked about her two choices. She could either worry herself about it and possibly get a sick tummy over it, or we could plan for the what-ifs.

She chose to plan!

So we packed a small bag of crackers and a drink. If she started to feel the least bit sick, she was to snack on a couple crackers and take a few deep breaths. She also took some tummy medicine before we left. This helped reassure her tremendously.

Once we got to school I asked how she was feeling and she said great. She reiterated all the stuff we talked about. And she told me she wasn't worried at all because she had planned ahead. I swear for a girl who is struggling so hard with academics, she amazes me with the concepts she grasps.

The play went off without a hitch. She was a star! She later told me about a girl who had last minute stage fright. She told me, "I told her that I guess I was just born for the stage. Some people are and some people aren't and I guess I just was". Atta girl, Alex!!!

The Chicken and the Egg

In conjuction with all of this, Alex has experienced frequent and often severe stomach related ailments. We started wondering and assuming the two issues to be related. But in addition to the chronic stomaches, she seemed to get the stomach bug more often and far more severe than one might consider typical.

So with this last episode, we really began to question whether something else was going on. A typical child will get a stomach bug, maybe once or twice a year. It may last 12-24 hours. And maybe they even vomit once or twice. Then by the next they are are usually feeling better and back to their normal activities.

Not Alex. Alex's symptoms will come on fast and furious. We usually see about 12 hours of violent vomiting, and by violent I mean scary, as in poltergeist. During its peak, which can last upwards of 4 to 5 hours, Alex will typically vomit every 5 to 7 minutes...continually. And she bursts blood vessels all over her face. After the vomiting subsides, it is followed by another 12 hours of violent diarrhea. As in, it comes on so fast and furious, she rarely makes it into the bathroom. After the initial 24 hours, the next 5 to 7 days are accompanied by constant waves nausea as well as more diahrrea. This is a physically and mentally exhausting process. And it's been happenning about every other month these days.

So some googling and another trip to the peds led us to a possible diagnosis: Cycling Vomiting Syndrome.

CVS is usually triggered by an illness or stress. The stress is often something positive, like a holiday, vacation or anticipated event. I cannot tell you how much this describes our life. Remember Alex being discharged from the hospital only hours before getting on a plane for Disney??? And the multitude of holidays that were ruined by her poor little tummy.

She pretty much fits everything it describes. Unfortunately the only way to diagnose is to rule out all other potential issues.

Which leaves us where we are currently.

Alex lives in fear of getting sick and throwing up. She is terrified of driving in the car for more than 5 minutes (as she gets car sick). She's been afraid to go out to eat, for fear of getting sick at a restaurant. If she feels the least bit sick to her stomach, it brings on an anxiety attack. The likes of which are truly heartbreaking.

Which leads us to the million dollar question. Which comes first? The Chicken or the Egg? Is she getting sick and then having an "episode of anxiety"? Or is the anxiety and worry bringing on the stomach issues? Honestly I think its just a vicious cycle of both.

Reading, reading, reading

It's still an odd feeling. Picking up a book about anxiety and depression...for my FIVE year old. Something about that just doesn't seem right.

But I feel like I need to get my hands on anything that will help Alex. And the first book I read was completely useless. Basically the book attributed childhood anxiety to crappy parenting. It listed all the things that could lead to a child experiencing anxiety and depression. Lack of maternal bonding. Physical or emotional abuse. Divorce or violence in the home. Alcoholism. Etc. And I get that. It makes sense that a child living in any of those situations might be anxious.

But what about my daughter? Who has a life so far from any of that. A little girl who has been loved a doted upon since birth. A healthy and beautiful child. Someone who essentially wants for nothing. How do you explain that? And more importantly, how can we help her?

So I found two other books at Borders today. I'll let you know if they are any better.

Kindergarten

Kindergarten was an adjustment for Alex. It was a big transition with big expectations. By our Parent-Teacher conference in November it was obvious that Alex was struggling socially, emotionally and academically. Her level of frustration and inability to take risks was impacting her academics and she had difficulty interacting with her peers. Her level of frustration was off the charts and would often result in excessive crying or just shutting down. Temper tanrums were at a peak. Stomach aches became more and more frequent. Alex was just not happy. We were officially in crisis.

We pressed the school to do some testing. In January tests confirmed our suspicions. Alex scored At Risk in the areas of Somatization, Atypicality, Withdrawal, Adaptibility, and Behavioral Symptoms. She scored Clynically Significant in the areas of Anxiety, Depression and Internalizing problems.

The chart that we filled out mirrored exactly to what her teacher's did. It wasn't in our heads and it was far more than a few quirks.

What's funny is that most family and friends wouldn't really see any of this. This was a completely different Alex than the child they knew. Most knew (or thought) her to be funny, outgoing and confident. Not the unhappy child described above. That's the scary part and where my greatest fears lie.

It is also worth mentioning that Alex has a strong family history of anxiety and depression. Never did I think that would imapct her to this degree.

Preschool

Alex attended a two day per week 3-yr old program. She loved school. It was a very positive experience for her. Her preschool teacher did note that Alex was very easily frustrated and often refused to try things which may be more challenging. She had to do it her way and with no help. If she wasn't successful, she was done with the activity.

The following year, we moved to Greece and Alex began a 5 day per week program. Although she still appeared to enjoy school her new teacher reiterated many of the concerns her former teacher had. As well as her level of expectation and frustration, Alex was unusually shy and had trouble making friends.

All previous issues continued as well. Alex still battled daily with constipation, though incorporating Miralax helped a great deal. Alex would still not wear buttons. We tried everything from ingnoring the issue to bribery to removing priveledges. But nothing would force her to wear buttons.

Temper tantrums also began to emerge about this point. Extreme tantrums were often over what seemed like non-issues.

Car sickness was identified and Alex became nervous of long trips.

The Toddler Years

Alex continued to blossom into a delightful toddler. Very verbal and articulate. Strong willed, yes. But a relatively happy child. Issues with constipation and car rides continued.

During this time, Alex also began an aversion to buttons. She refused to wear buttons on any clothing. It was never really made clear where this phobia came from and why she doesn't like them.

The beginning....Infancy

Alex was born June 27, 2003. She was lovingly placed in our family June 29th. She is a funny, bright, active and charming 5 year old. Alex has so many amazing qualities, far too many to list. But there has always been something a little bit special about her. Her perception and reactions have not always been what one might consider "typical". As all children are so different, we never really attributed her quirks to anything more than just that. Quirks.

During infancy she was happy baby. She struggled with constipation very early. Other than that, she had several bouts of stomach related bugs, but nothing we were particulary alarmed by.

She hated the car from the start and often cried so hard she'd throw up. We were told that it wasn't motion sickness, but rather her bodies response to crying that caused her to get sick.

It was also suggested that children with chronic constipation (not due to diet) often had a highly likelihood to have issues with control. Hmmm.

In additonal, Alex never really enjoyed large groups. Holidays spent with extended family often led to increased crying and general fissiness.