Selah N.
Welcome Friends!
Birthdate Is    April 24, 2006

Main Infantile Spasms/Epilepsy Date of Diagnosis Is November 2006 Other Diagnosis Is Brain tumor, Left Temporal Lobectomy, Autism

THEME:Angels with purple


Selah had her first seizure on November 27, 2006 at 7 months of
age. We were given the diagnoses of infantile spasms. We thought infantile spasm
would be something that she would grow out of after infancy. After a year of
battling this disorder we learned the realities of this disorder.
When Selah first came home from the hospital after the seizures began her
doctors put her on phenobarbitol. The phenobarbitol started to work immediately.
She was seizure free for two months. At that point we thought it was over and we
would not be seeing anymore seizures. In February the seizure returned stronger
than before. At that time her neurologist raised her phenobarbitol dosage since
it had worked so well in the beginning. We saw no change in the seizures with
the medication raised. Her doctor then did another eeg which confirmed what she
was thinking that it was infantile spasms (she was first diagnosed with
myoclonic seizures). Her doctor told us that there had been much success with a
shot called ACTH which is a steroid shot. She said that a lot of children with
IS gained total seizure control on this shot. For three months she was on the
steroid which is administered at home by the parents on a daily basis. After
three months of no change in her seizures she was
  taken off of the ACTH. The ACTH since it is a steroid caused her to gain a lot
of weight and it was during the time she was receiving the shot that she lost
her smile. It was on a rare occasion at that time that we got the opportunity to
see our little girls smile or hear her squeal. After the ACTH she was started on
Zonegran (she was also still on phenobarbitol at this time). The Zonegran showed
very little improvement but is believed to not work as well with phenobarbitol.
We then started weaning her off of phenobarbitol. Once she was off phenobarbitol
she started another medication called lamictol to work wtih the zonegran. We saw
improvements in her personality when she first started on the lamictol. We were
beginning to see little smiles here and there along with a little eye contact.
These two medications still did not stop or even slow down the seizures. Her
doctor eventually added two additional anti convulsants. around the age of 15
months old Selah began to have t
roubles sleeping and she was put on a sleeping pill. She is now 4 years old and
still cannot sleep without taking her sleeping pills. Even with them she still
wakes frequently during the night. Through all of this Selah was developing. She
was behind but she was still make some progress. She was sitting up, playing and
even trying to stand and take steps. At 19 months old she started regressing,
she got to the point where she could no longer sit up or even hold her head up.
Her neurologist in Greenville ordered another MRI and they found a spot on her
left temporal lobe. This was January of 2008. We were then sent to Duke to meet
with a neurosurgeon and neurologist. They did another MRI and decided that the
spot may be a tumor and needed to be removed. She had surgery on April 4th,
2008. They removed the tumor and most of her left temporal lobe. While still in
the hospital recovering Selah had her last visible seizure on April 8th. Since
the surgery Selah still takes anticon
vulsants and sees her neurologist regularly. Her development started back up
and she is now 4 years old and is walking and running. She loves to play and
laugh. She does not understand how to play like other children or with other
children.  Selah does not talk but she is communicating with us in her own way.
She receives physical therapy, occupational therapy and speech therapy at school
and also receives speech therapy from a private practice. Selah is still very
far behind developmentally but she no longer has to battle seizures every day.
Her doctors still see seizure activity just below the surgery site but they are
not visible to us. 
Since her surgery Selah has received a diagnoses of autism and cortical visual
impairment to add to the diagnoses of epilepsy. Selah currently functions on
around a 6-12 month old level.

Biography