OPD Syndrome
Family Resource Network
It took a few months to get Michael's diagnosis after he was born. Michael had a
hard time takng nourishment from a bottle due to his cleft palate. In the first few
months, it seemed like the entire day was taken up with just feeding Michael. We
would bottle him first with a special squeezable bottle for up to an hour and then
pour the rest of the feeding into his g-tube. Later, when he started on solid food,
it was easier and took less time. He had his g-tube removed when he was about a
year old when he was taking enough calories orally and his palate was repaired at
18 months.

When Michael was two, we discovered that he had developed scoliosis. When he was
four years old, it was so severe that he needed surgery to fuse his spine. The
surgery only fused his spine in the back, however, so his back continued to twist
and curve. Spinal surgery to straighten out his back would be extensive and too
risky at this point.

In 1994, when he was 10, Michael was found to have Arnold Chiari Malformation and
underwent a posterior fossa decompression to allow for more room and to reduce
the size of a syrinx that had formed with the increased pressure. His syrinx
eventually needed to have a drain inserted but he hasn't had any problems with it
since. He continues to be followed by neurosurgery with regular MRI's.

Michael has always had trouble with his lung capacity and breathing. In 1997,
Michael had an acute case of bronchitis/pneumonia and was hospitalized. At that
time, he began to use a bipap machine during sleep for sleep apnea. Later, Michael
had surgery to pull his jaw forward to give him more room in the rear to breath
easier but he still needs to use his bipap.

Overall, we have been very lucky with Michael and have had, for the most part,
great medical care and great doctors. Michael was a straight A student all through
elementary and high school and currently attends college aiming for an Accounting
Degree. [
pmm 8/28/09]
Michael