She was eventually diagnosed with Subglottic Hemangioma with external components
on her face and neck area. At five weeks, Camryn received a tracheotomy because
her airway could not be maintained. She was put on the IV steroid, Decadron, and
Interferon was given as an injection, nightly without fail. At twelve monthss, and
at eighteen months, we saw no more signs of growth, but also no resolution of the
hemangiomas.
We took Camryn off the Interferon because we experienced no benefits but lots of
side effects. During Camryn's first year she was classified as "Failure to Thrive"
and recommended for a feeding tube. Since August, 2001, Camryn has had three laser
surgeries which appear to have been successful.
On January 13, 2002, we were formally introduced to glyconutrient products, which
we hoped might reduce Camryn's hemangiomas more rapidly as well as providing
nutritional benefit for her. On February 1, 2002, Camryn was admitted to the
hospital with the RSV virus. She had been scheduled to remove her trach the
following week, and we knew that because of the RSV, she would have to wait
another eight weeks.
But, God has a plan. Camryn started on IV steroids again that night. Two days
later, we saw a dramatic, very obvious change in her face. The subdermal
hemangiomas were reducing. Our Camryn looked almost normal almost overnight. We
were ecstatic! We knew in our hearts that it had to be the glyconutrients that
were finally allowing Camryn's cells to communicate effectively so that the steroid
would finally work.
Camryn continued on the steroids for approximately ten days. At the end of that
time, we noticed a little bit of regression in that the swelling in her neck
had come back ever so slightly but we were still very pleased with what we
were seeing.
