Tevin progressed like any other child. He learned to crawl,
smiled, laughed and played. There was some delays but we chalked
it up to the twin thing where there is always that possibility
of twins having delays or other health issues.
One of the first problems we noticed with Tevin was his right
leg. After a couple of doctor visits we were told it was metatarsus
abductus and internal tibial fusion. Told to buy some special shoes
and use a bar to keep the feet pointing outward at night. Needless
to say the bar usage didn't last long.
From there things went on as normal. But at Tevin's 18mth checkup
our concerns of his development were noted and a Denver test was done.
Tevin's cognitive level was that of a 3-5 month old. From there we
seeked out Early Intervention services.And Tevin also began having
seizures around this time.
From various doctors etc. the first conclusion and diagnosis for
Tevin was Autism Spectrum Disorder. Battens was not considered yet
because he had tested as a carrier during prenatal testing. Over
time Tevin began getting more and more irritable. He was also tired alot.
Tevin began having more and more difficulty eating solid foods and using
a sippy cup. He also began falling more and more and therefore wouldn't
walk and went to crawling. When Tevin turned two we were told yes that he
did have autism spectrum disorder but he had something else going on but
no one knew what.
Mid-September we relocated to Texas. For a month prior up until this time
Tevin regressed at a terrible rate. Within a matter of 4-6 weeks Tevin could
barely take baby food or fluids from a syringe. He could no longer walk or
even crawl.
Barely a month after arriving in Texas, Tevin had a g-tube put in so he could
take nurishment and receive his anticonvulsant medications. On Friday, November
8th Tevin was officially diagnosed with Infantile Battens Disease. At this time
Tevin's condition is rapidly declining. He is requiring oxygen most of the day
and night. We have to watch his tempeture as he tends to run high fevers as well.
All of us hold him as much as he'll tolerate. Tevin is a very beautiful and special
little man.
