Personal info Child

name: Taylor Marie
sex: Female
4/21/1998 - 4/5/1999
country: TX USA

Epilepsy info

primary diagnosis: Infantile Spasms
additional:
cause: Meningitis/strokes
date diagnosed: November 1998
type(s) of seizures: "jacknife" motion
frequency of seizures: Every 1-2 hours, lasting anywhere from 5-15 minutes
additional health issues: Visually impaired, diabetes insipidus

Medications used (in chronological order)

Phenobarbital
- still being used: No
- effectiveness: Neutral
- max. dose: 10 CC/day
- side effects: Very sleepy
- comments: Taylor was started on this when she was in ICU with the meningitis. Unknown of the type seizures she had then.
Phenytoin (Dilantin)
- still being used: No
- effectiveness: Neutral
- max. dose: 50 mgs/day
- positive effect: Cut spasms in half
- side effects: None
- comments: This medicine helped by reducing the number of times per day she had seizures.
Corticotropin (ACTH)
- still being used: Yes
- effectiveness: Positive
- max. dose: 80 units/day
- side effects: Irritable, bloating, stomach problems, reflux
- comments: The side effects have been bad but the spasms stopped after the third day of treatment. she has 1 more week on the ACTH.

Personal Notes

Taylor was diagnosed with Group B Strep Meningitis at three weeks of age. She suffered massive strokes and the left side of her brain is completely damaged. She lost her vision and developed diabetes insipidus. The spasms showed up as her neurologist was weaning her from the Phenobarbital. It did not show up on the EEG, but the type of seizure she showed was definitely infantile spasms. We tried other meds besides what I listed but nothing worked. On February 9, 1999 she was started on ACTH injections. The seizures stopped on February 11th. It has made a big difference. The little girl that slept all the time and never cried now cries all the time and is awake more. The side effects have not been fun but it will be worth it if the seizures stay away. She is smiling again and will laugh at times. She sits up with support and holds her head up. She is now beginning to eat from a spoon. This doesn't sound like much, but before these seizures stopped she did nothing at all. I would love to hear from any parents that have dealt with meningitis and has experienced any of the same thing.
Update 12/17/02: Well, my little angel went back to heaven on April 5, 1999. She suffered alot of brain damage from the meningitis. On April 5th, she developed a high fever, so high that her body could not handle it. She is still a part of our family and is missed so much.

Contact info

For additional information, please send e-mail to Deanna (Dmarie0421@aol.com)