Personal info Child

• name: Hope
• sex: Female
• 12/22/1997 - 4/28/1999
• country: IL USA

Epilepsy info

• primary diagnosis: Myoclonic Seizures
  
• additional: Multicyst dysplastic left kidney, central apnea, burst suppression EEG and myoclonic jerks
  
• cause: Unknown
  
• date diagnosed: At birth
  
• type(s) of seizures: Myoclonic
  
• frequency of seizures: Unknown, she has clinical and subclinical seizures. clinical have subsided since medication is at a therapeutic level
  
• additional health issues: Developmental delays, ventilator dependant with trach, G-button feeds, PT, OT and ST.

Medications used (in chronological order)

1. Phenobarbital
   
   • still being used: Yes
     
   • effectiveness: Positive
     
   • max. dose: 6.5 mg twice a day
     
   • positive effect: Clinical seizurea have subsided
     
   • side effects: Drowsiness
     
   • comments: Although her clinical seizures have subsided, she still has up to 50 subclinical seizures per day and myoclonic jerks frequently.
   
   
2. Phenytoin (Dilantin)
   
   • still being used: No
     
   • effectiveness: Negative
     
   • max. dose: Unknown
     
   • positive effect: None
     
   • side effects: Unknown
     
   • comments: They never could get a level above .07.
   
   
3. Pyridoxine (Vitamin B6)
   
   • still being used: No
     
   • effectiveness: Neutral
     
   • max. dose: Unknown
     
   • positive effect: None
     
   • side effects: None
   
   

Alternative Treatments (in chronological order)

1. Physical therapy
   
   • details:
     
   • still being used:
     
   • effectiveness: Positive
     
   • positive effect: Becoming more responsive
     
   • side effects: None
   
   
2. Speech Therapy
   
   • details:
     
   • still being used:
     
   • effectiveness: Positive
     
   • positive effect: Oral aversion is much less severe
     
   • side effects: None
     
   • comments: Severe oral aversion from being inhabated for so long, which led to her losing her ability to suck. Yet since starting this the change is dramatic.
   
   
3. Occupational Therapy
   
   • details:
     
   • still being used:
     
   • effectiveness: Positive
     
   • positive effect: Helping control myoclonic jerks, focusing and hand movements.
     
   • side effects: None
     
   • comments: Therapies are fantastic if you have good people working with you and you follow through every day as often as possible.
   
   

Surgeries (in chronological order)

1. Tracheostomy
   
   • details:
     
   • surgery date:
     
   • effectiveness: Positive
   
   
2. G-Tube Placement (Gastrostomy Tube)
   
   • details:
     
   • surgery date:
     
   • effectiveness: Positive
   
   
3. Nissen Fundoplication
   
   • details:
     
   • surgery date:
     
   • effectiveness: Positive
   
   

Personal Notes

Contact info