Personal info Child

name: Hallie Jewel
sex: Female
11/24/1999 - 3/16/2000
country: OK USA

Epilepsy info

primary diagnosis: Infantile Spasms
additional: Hypsarrythmia
cause: Unknown, chromosomal testing normal
date diagnosed: March 1999
type(s) of seizures:
frequency of seizures: Weekly to several times a day lasting from 3 minutes to 25 minutes. The longest seizure witnessed was 45 minutes.
additional health issues:

Medications used (in chronological order)

Phenobarbital
- still being used: No
- effectiveness: Neutral
- max. dose: 4cc 2x day
Lorazepam (Ativan)
- still being used: No
- effectiveness: Unknown
- max. dose: .5 to 1mh as needed

Alternative Treatments (in chronological order)

Pentobarbitol
- details:
- still being used:
- effectiveness: Unknown
- positive effect: Stopped seizure activity (hypsarrythmia)
- side effects: Had to be put on ventilator, damaging to organs,
- comments: We never saw her awake again. Her seizures were becoming continuous...ativan, versed seemed to induce seizures. Pentobarb was used to stop everything so her brain could rest. After weaning her to a low dose of pentobarbitol, the hypsarrytmia continued on EEG. We had no hope of taking our jewel home.

Personal Notes

Our Hallie Jewel was born 11/24/99, she was born three weeks early. I believe she had seizures in utero...the doctors are unsure. She was born meconium stained, I believe due to a seizure in utero. We life flighted her to a big hospital to treat her respiratory distress. It was in the hospital we noted she was having seizures while on a ventilator and heavily sedated. The EEG did show abnormalities, and an MRI showed cavuum septum pellucidum (which later closed as normal) and a difference in size between the left and right ventricles of the brain. Two weeks later we took her home on phenobarbitol only. After one month at home she started having seizure activity ranging from focal (the right or left side only) to generalized seizures. Our neurologist then started dilantin. The seizures worsened in frequency, strength and duration. We went to Dallas for a second opinion and started her on tegretol (all three meds being given). After coming home with high hopes, her seizures again changed. Since Feb 24, we were at home for one day, and then went right back to the hospital where her condition changed drastically. After the seizures became worse, our dr. just happened to walk in and see her....he then told us things were looking grim as he told us that she was having salaam spasms and suggested hypsarrythmia would be evident on EEG. Our doctor was right. After trying depakote and ACTH without any change in seizure activity, she was put on pentobarbitol in order to stop activity in the brain, this required her to be on a ventilator. After seizure activity on continuous EEG monitoring stopped with the pentobarbitol, we had to wean her off....she couldn't live for long with this medicine. As soon as the pentobarb was lowered the seizures continued. After the pentobarb was stopped, we knew we weren't going home with our daughter.This is when we had to make the decision to let our precious jewel die. We are not sure of the cause of her seizures, all tests (labs, lumbar puncture) were normal . We are waiting for results concerning chromosomal or genetic problems which may have caused this. Our thoughts and prayers are with all of you who may be suffering from infantile spasms or seizures. tt
Update 4/12/00: I was interested in the history of children with Infantile Spasms or hypsarrythmia, please add this to the diagnosis area. I am honored to have been a part of this website. JMCINTYRE.

Contact info

For additional information, please send e-mail to Zj (mcintyre@ptsi.net)