additional: Battens/ NCL has been questionable/ and more recently doubted
cause:
date diagnosed: Spring of 97
type(s) of seizures: Grand mal seizures, and the myclonic jerks
frequency of seizures: She had two isolated seizures a year apart. In Jan 97 She had her third seizure, and there after they became more and more frequent. Now she seems to go a week or two w/out any, and then have 10 grand mal seizures in one day, and continue to have many a day for weeks.
additional health issues:
Medications used (in chronological order)
Carbamazepine (Tegretol, Carbatrol)
still being used: No
effectiveness: Negative
max. dose: 1teaspoon 3xday 1/2teaspoon at bed time
positive effect: None
side effects: Extremely emotional
Divalproex (Depakote, Depakote Sprinkles, Epilim)
still being used: No
effectiveness: Negative
max. dose: 2 capsules 3x daily
positive effect: None
side effects: Upset stomache
comments: Seizures seem to increase
Clonazepam (Klonopin, Rivotril)
still being used: No
effectiveness: Unknown
max. dose: 3 1mg tab a day
positive effect: May have slowed seizures
side effects: Extreme drowsiness
Phenytoin (Dilantin)
still being used: No
effectiveness: Unknown
max. dose: 1.5ml a day
comments: Taken with other meds, hard to keep level rght
Corticotropin (ACTH)
still being used: No
effectiveness: Unknown
side effects: Swollen
comments: First time used seem to get good effects, second time did nothing
Felbamate (Felbatol)
still being used: No
effectiveness: Unknown
comments: Used for a very short time- did not control seizures at all- we used long enough to get levels high-
Pyridoxine (Vitamin B6)
still being used: Yes
effectiveness: Negative
positive effect: This did not help Chase's seizures but worth a try since there were no bad side-effects
Topiramate (Topamax)
still being used:
effectiveness: Unknown
max. dose: 25mg 4x a day
positive effect: Maybe a very slight decrease in seizures
side effects: Nothing obvious for Chase
comments: It is hard to say about side effects and Chase. She does not verbalize,she does not cry, all we can base our decissions on are her seizures. She does not walk or eat on her own, so we do not know how the meds might effect thes abilities.
Methsuximide (Celontin)
still being used:
effectiveness: Unknown
max. dose: 25mg 3X a day
positive effect: She has been on this for just over two weeks- no known positive effects
side effects: Not as of yet, for Chase
comments: It has not controlled the myoclonic seizures, and only time will tell with the generalized, clonic tonic, for she has those in intervals. She will go 2 to 3 weeks without any and then have them non stop for days.
Alternative Treatments (in chronological order)
Ketogenic Diet
details:
still being used:
effectiveness: Negative
side effects: Lost weight
comments: Discontinued after 3-months
Surgeries (in chronological order)
Biopsies-skin and muscle
details:
surgery date:
effectiveness: Unknown
comments: For diagnosis purposes
Personal Notes
Chase is our five year old daughter. She has one older sister, Stori, who is 8 years old. She has one little sister, Jessie, who is 4 years old. Chase had two isolated seizures that were years apart. In Jan. 97 She had her third seizure. It was at this time she was put on her first seizure medication. Her seizures were never stopped or controlled by any of the medication and now she is on no medications. She has gone her longest w/out seizures while she was not taking any medicine. Now she has her great weeks and some really bad weeks. She always has the myclonic jerks, almost constantly. In Jan. 97 she was healthy in March she was put into the hospital for the ketogenic diet. While there she had a skin and muscle biopsy done- and a g-button put in- temporary I was told- . Three weeks later we took Chase home unable to hold her head up, she was unable to walk, talk, or do anything else. She no longer smiled or cried. Later we were told that she had Battens. For months we have learned about Battens- In December of 97 we took her to the University of Minnesota- there we were told that she did not have battens- it was just a seizure disorder-Our doctor here still believes her to have some degenerative brain disease- while the doctors in Minnesota disagree- We are confused by many factors- If it is a seizure disorder-my thoughts are will we ever stop the seizures completely will she return to normal? She has gone a month before w/out a seizure-but that is rare. I would love to hear laugh, and talk again-to see her smile would be such a gift-I would love to hear from anyone
Update 03/24/98: Chase is throwing up a lot. She has been fed through her feeding tube for a year now. For the past month or so she has been throwing up after her feedings. It is hard to know how much she is getting. We have slowed down the feedings, and that does not help. We have tried different possitions but nothing seems to help. Any suggestions? Thanks!! Update 7/11/99: On September 29, 1998, our Chase had her last seizure. She began having seizures the night before and had several each hour. She continued to have the seizures into the next morning. She stopped breathing and the emergency crew were unable to revive our precious daughter. Although, it was a seizure that caused her to stop breathing, her autopsy report that we just received showed several infections in her lungs and intestines... many tests were done to try and find the cause of her seizures, are prayer was for some answers, answers that maybe could help someone else. The report revealed very litte to why, Chase lost all her abilities, and did not answer the "WHYS" of Chase's illnes. Our broken family, needs the prayers of many. Chase left behind to sisters, Stori and Jessie, who miss her dearly. Her father and I long for her, but we do believe we shall be with her again, one day. Our prayers are with all of you who battle seizures.
Contact info
For additional information, please send e-mail to Jimmie (C-J-Long@juno.com)
