Amelia's Illness

My third daughter, Amelia, had a routine tonsillectomy just after her 3rd birthday in 2009.  She had recently had her vaccinations (including the DTaP, Diptheria/Tetanus/attenuated Pertussis).  A week later, she still hadn't recovered, and we had seen four different doctors, visited the emergency room 3 times, and spent whole days lobbying to have her seen at a larger hospital.  Finally, she developed some extremely alarming symptoms that sent my husband and I scurrying to a large children's hospital to pursue a better diagnosis for her condition.  By evening, she was in a semi-coma, and had been diagnosed with severe meningitis that could be life-threatening.  The next day, she was also diagnosed with encephalitis (an infection in her brain). It took many months to understand the depth and cause for this infection.  We now know it was a result of her vaccinations followed so closely by even a routine surgery, further depressing her immune system.  After the infection was cured, she developed an auto-immune disorder called Acute Disseminated Encephalomyelitis (ADEM) and had a multiple sclerosis-like event during which she lost 90% of the myelin (protective covering) in some parts of her brain.  Steroids helped with this problem, but she then developed a severe seizure disorder.  She now lives with simple partial, complex partial, absence, and tonic-clonic seizures and requires two medications and multiple life-style changes to control her symptoms.  We still don't know the eventual outcome...whether or not she will ever recover fully. I have collected the posts related to her initial diagnosis and treatment, along with our continuing battle with seizures, here so that you can easily access them.  It is our hope that our experience comfort others going through the same thing, or serve to educate parents about the potential dangers of vaccination so that they can make truly informed decisions about preventative health care and their family. Amelia is the face to those words: "possible side effects" on the vaccine information sheets.

The Week Prior to Diagnosis
Hospitalization for Encephalitis
Hospitalization for ADEM
Treatment for ADEM
Diagnosis of Seizures
Living with Seizures
Diagnosis of Immunodeficiency

On healing:
Teaching non-traditionally using activities
Making room for special needs
Epilepsy monitoring in the hospital
Feeling helpless in the complex medical world
Severe nocturnal seizures
Feeding issues: taste and texture aversion
The gift of a child who survived life-threatening illness
Dealing with fear after almost losing a child
Amy learns to READ!