Feeling Helpless

The "incision"

The "incision"

Nearly one year ago, we were preparing for my oldest son to have brain surgery.  He had been vomiting non stop, unable to keep any food down for 5 weeks. He was diagnosed with an arachnoid cyst - a fluid filled brain cyst which was causing his nauseousness and vomiting (the body is an amazing thing - how it's all connected).

The surgery was successful and within days he was eating normal and feeling 100% better.

Fast forward six months to October - he was home from school for 5 days with nauseousness and vomiting.  After a few days, I was more than concerned and called the neurosurgeon.  They did an MRI check and gave the all clear and referred us back to our GI.  She was unable to officially diagnose anything at that time.  He was given anti-nausea meds and an antacid to take until the episode subsided.

And it did.  For nearly 6 months - until the day after Easter.  He woke up nauseous and vomiting again.  Missed another 5 days of school.  Back to the GI and he was officially diagnosed with Cyclic Vomiting Syndrome (CVS).

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According to the Mayo Clinic, "Cyclic vomiting syndrome is characterized by episodes of severe vomiting that have no apparent cause. Episodes can last for hours or days and alternate with symptom-free periods. The symptoms of cyclic vomiting syndrome often begin in the morning. The underlying cause of cyclic vomiting syndrome is unknown. Some possible causes include genes, digestive difficulties, nervous system problems and hormone imbalances. Many children with cyclic vomiting syndrome have a family history of migraines (I do!) or have migraines themselves when they get older (he actually also has migraines!)".

I've tried to do as much research on this topic as I can since he was diagnosed...I have heard it called "abdominal migraines" and a clinical nutritionist physician in Nashville - Dr. Axe - said "some research indicates the problem may be related to a miscommunication disorder between the brain and the gut."

I find this sentence to be fascinating considering his arachnoid cyst diagnosis and surgery.  However, he has had stomach issues his entire life - motion sickness, stomachaches, vomiting etc.  Who's to know now if it was caused by the cyst or CVS.  Perhaps everything early in life was the cyst and now with the anxiety of all of that, he developed CVS on top of it? But the research of arachnoid cysts do say, although they are often present at birth (primary arachnoid cysts). Head injury or trauma can also result in a secondary arachnoid cyst (which he had two of during the 2017-2018 soccer season).

Regardless, now we are dealing with CVS and the common triggers include:

  • Emotional stress or excitement*
  • Anxiety or panic attacks*
  • Certain foods and drinks, such as alcohol, caffeine, chocolate or cheese*
  • Overeating, eating right before going to bed, or fasting*
  • Motion sickness*
  • Physical exhaustion*
  • Colds, allergies or sinus problems
  • Exercising too much
  • Hot weather

And since I'm being honest - I would say all the items with an asterisk (*) he is guilty of doing/having...he is 16, so he's old enough to know better on what to eat and when etc...but apparently he doesn't (LOL) as this could very well be some of his triggers.

Who's to know.  All I know is that I feel helpless.  I wish I could fix him, cure him, make him feel better.

For now I am trying to find support with others who are experiencing this with their kids. I have joined several Facebook support groups, including the Cyclic Vomiting Syndrome Association page.  I plan to participate in the CVS support group phone call next week.  I'm hoping I'll learn something. It feels better to know he's not alone - and not crazy (as he may think) - and not faking it (as we sometimes thought).  Even celebrities have opened up and talked about the condition.  Chandra Willson's daughter was diagnosed when she was 16 after 10 months of symptoms.

As helpless and anxiety ridden that I am...I know it could be worse and I need to count my blessings.  When I remember that, I remember it really is a beautiful day.

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