December 15th, 1998
Tommy was diagnosed with Multicore Myopathy when he was 18 months through a muscle biopsy.
He had sat at 5 months and walked at 14 months but he had head lag and his arms
would (will ) slip when you lift him. He had a poor "suck" at birth and lost
weight until I started him on formula at approximately 2 weeks . Then we would practically
pour the milk into his mouth! He eats very well now but is very thin.
We have no family history of multicore or anything on either side but,
there are people on both sides that were very late walkers and some delayed milestones.
Tommy is with the M.D. clinic at children's hospital. We are hoping that he will qualify
for an early intervention program for speech , P.T. and O.T. His biggest problem
right now is climbing stairs and tiring out quickly. His head still lags at times
too. He is very smart. In the mean time he has P.T. twice a week at the Robert
Warner clinic. They are also
watching him for O.T.
Tommy has an older sister who is 4. She has no symptoms of multicore
myopathy but she did not walk until she was 18 months. She is very smart and
can do any physical things but is not the most coordinated (neither am I). We
refused to have her tested because we did not want to put her through the ordeal of
a muscle biopsy.
January 26th, 1999
Wanted to let you know that Tommy has qualified for an early intervention
program here in Erie Co. He will be receiving P.T. twice a week and O.T.
once a month. They have to redo his speech evaluation because he got so
tired
he couldn't complete it. Things are looking up!