Saturday, October 10, 2009

Was it Guillain-Barre Syndrome ?

It is now October, and I am finding that as the world arrives at the place it was last year, before the most difficult year of my life began, that I have access to many more memories than I did just after Daniel passed. This time last year, Daniel and I were homeschooling, organizing the farm, readying for Thanksgiving, and I was planning to diminish my work schedule from part time to very little time at all. At about this date last year, I received a phone call that my Dad was very ill in another city, and for four days, until he died, I spent that time with him in a private glass room in an Intensive Care Unit of a major university hospital. When I did call home, and spoke to everyone including Daniel, I made sure he was feeling well. On one Saturday, before my father died, my husband brought all of the kids to see my father. Sadly, my father had deteriorated between the morning when he knew the kids were coming and the afternoon when they actually arrived. I remember Daniel being very upset at seeing my Dad, who was clearly dying. I remember holding Daniel, outside the ICU room, who was crying and telling him how much I love him and that we needed to let my Dad go. I told him that Dad could hear him in the room and would still be grateful for this visit. Daniel was well, other than being understandably emotionally upset. After my Dad passed and we were at home, I came down with a flu, I believe I caught at the hospital, and it quickly spread through the house. I was pretty sick for a bit more than a week, as was everyone else. Daniel appeared to have it more mildly than everyone else, and it appeared to be affecting him mildly and as a respiratory illness. This was early November, and I remember voting, but thinking I was not really well enough to be there. In the flurry of completing some of the estate matters for my Dad and also completing the college semester and getting the grades in, I did not take Daniel to the doctor for the flu. He seemed well, in fact better than the rest of us, but I do remember several things now, that I did not recall then. I remember that before Daniel died on the day after Thanksgiving, that he was more tired than usual in the preceding couple of weeks. I attributed this to having lost his beloved grandfather and a flu which appeared to be resolving nicely. He did complain twice of a morning headache, which responded to Claritin (Loratadine, an antihistamine which does not cross the blood brain barrier), both times. He did complain of blurred vision late on Thanksgiving evening, after a full day of celebrating with us and my son Adam's fiancees family nearby. He had watched two videos, "Hancock" and "The Incredibles", so I thought a little blurred vision meant he was tired. I remember that in the month preceding his passing, Daniel did ask about a pins and needle sensation in his foot and leg, which I attributed to too much time at the computer that day. He also once complained of nausea, once. At no time did Daniel complain of anything significant enough to warrant immediate medical care, or we would have dropped everything and heading for UVA Medical Center immediately.
In the long and sorrowful year which has passed, we have never really received a definitive answer as to what happened to Daniel. The final autopsy states only "Probable cardiac arrhythmia due to unknown etiology". The experts think that he may have had something called "Long QT syndrome" but there is no proof, no EKG, and no abnormal accessory pathways detected on autopsy. He does not have any of the known genetic markers for cardiac conduction disorders.
One of the things I have done this year is to read as much as possible as to what could have taken Daniel. How can I work toward educating the world about what took Daniel, and work toward good, if I can't ascertain what happened ? In order to do this, I have read or purchased many books including but not limited to:

The Long QT Syndrome (Peter J. Schwartz MD)

Sudden Death in Infancy Childhood and Adolescence
(Byard and Cohle)

The Mayo Clinic's Cardiology Textbook

I have read tons of journal articles on everything from viral syndromes, to Brugada syndrome to Reyes Syndrome. I have even communicated with Dr. Brugada in Barcelona, for whom the syndrome is named. I am sorry to say that I never had any idea that so many children die suddenly and without clear cause.

(Please see:
devoted to sudden unexplained death in childhood.)

My final theory which will likely never be proven,as I am a registered nurse and college instructor, not a pathologist, is that Daniel died of a concurrent respiratory and cardiac arrest as a result of Guillain-Barre syndrome. I believe that he developed a mild virus around the time that my father died, and that he developed an autoimmune response to that virus, as is the poorly understood result of GBS. His only symptoms were mild, and included transient pins and needles sensations in his legs once or twice, some tiredness, a little bit of nausea, and some blurred vision. He was at no time febrile. The clue is that when I began CPR on Daniel, his face was flushed, which I now read is a sign and symptom of Guillain-Barre. Few children develop GBS and when they do, they may not be diagnosed, as their symptoms differ somewhat from the syndrome as it afflicts adults. Daniel does come from a family with a variety of autoimmune disorders from autoimmune juvenile diabetes, to Crohn's and Hashimoto's thyroiditis.
The only thing I can convey to you is that if a person, any person, child or adult, has weakness in arms or legs following a flu, that they should receive a neuro exam to rule out Guillain Barre. Most patients survive GBS once it is diagnosed, although some do spend some time in ICU and on ventilators. It is possible that even if I had taken Daniel to a physician on or around Thanksgiving, that his neuro checks would not have been out enough to hospitalize him and support him through the apparent event that ultimately took his life.
In remembering more about this time last year, I remember how beautiful Daniel is, and how happy he was at that time. He was full of hope for the future and joy despite the fact that he missed his Papa L. I am not sure what I could have done had I recognized even the possibility of Guillain-Barre. I would have taken him to an ER, but what happened there afterward would have been beyond my control. It may have saved his life, and it may not have. Just as I did not understand this to be the threat it became, the ER doctors may not either, until it became a circumstance of sudden death.
I remain grateful that my dear boy will have no recollections of an ER or an ICU, or the helicopter which came to the farm in a futile attempt to save him.
Daniel, I love you so. I think about you all the time. I remember your hug and all our wonderful conversations. Your beautiful spirit is welcome here with us anytime.

"Seize the Day" Artist: Carolyn Arends

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