Long story but bear with me . My son was born with an intraventricular hemorrhage which led to hydrocephalus
. He was shunted at 13 mos. AT age three , he developed seizures and at age seven was diagnosed with a very rare sz. disorder
which is treated with steroids and gamma globulin infusions. Treatment lasted nearly 3 yrs.
To make a long story short, about two yrs. ago, he started dragging his right leg and his foot started
turning out when he walked.. This kept getting progressively worse. Next , he started walking on the
outsides of his feet. SO, this prompted a visit to the ortho. who diagnosed cavus foot. Orhto. also mentioned
that he felt my son's condition was progressive. He underwent cavus surgery in Feb. which improved
the looks of the feet but his gait is still horrible. Orhtho. mentioned that due to the wasting of his peroneal
muscles and the gait disturbance that he could have a neuromuscular disorder. SO my question are:
Does any of this sound familiar?
What types of testing will he undergo? We have had mitochondrial/genetic testing done yrs. ago along
with a zillion MRI's ( you name it).
Does anyone feel that steroid therapy for three yrs. could have an impact on this ?

ANy thoughts are appreciated.

KDI

• Re: Suspected neuromuscular disease in 11 yr. old boy - Need info. Sarah 23:19:48 5/31/00 (1)
  • Re: Suspected neuromuscular disease in 11 yr. old boy - Need info. Pat Wagner 01:02:58 7/19/00 (0)