type(s) of seizures: They've been referred to as tonic/clonic, focal and then generalizing, intractable, etc.
frequency of seizures: Anywhere from 10 - 150 per day.
additional health issues: Aside from this, Daniel appears very healthy...
Medications used (in chronological order)
Phenobarbital
still being used: Yes
effectiveness: Positive
max. dose: 75 mg per day
positive effect: It seems to control the severity, but not frequency
side effects: Daniel is very sleepy
comments: We had been on Phenobarb since the beginning. Recently, we stopped to try different medicine and Danny went into status, having seizure after seizure and was put into a Petobarbital coma. Upon coming out of the coma, he was immediately put on Phenobarb again.
Corticotropin (ACTH)
still being used: No
effectiveness: Negative
max. dose: 80 units per day for 1 1/2 weeks.
positive effect: None, if anything the seizures got worse
side effects: Irritability, increased appetite, crying
Phenytoin (Dilantin)
still being used: Yes
effectiveness: Unknown
max. dose: Unknown - levels were high teens
comments: It seemed ineffective in helping the seizures so, Danny was weened off after 2 weeks
Carbamazepine (Tegretol, Carbatrol)
still being used: No
effectiveness: Unknown
comments: Also uneffective.
Lorazepam (Ativan)
still being used: No
effectiveness: Neutral
max. dose: 3x per day and as needed
positive effect: Originally, it controlled the seizures
side effects: Sleepy
comments: At first the Ativan was effective in temporarily stopping seizures and helping Daniel to relax (he had become very stiff). This eventually seemed to wear off and the Ativan was stopped
Felbamate (Felbatol)
still being used: No
effectiveness: Negative
side effects: Seizures worsened
comments: This was the last medicine we tried before Daniel was put into a coma.
Vigabatrin (Sabril)
still being used: Yes
effectiveness: Unknown
max. dose: Currently 125mg per day and increasing
side effects: Irritablity, crying
comments: This is the medicine we just added. Daniel's currently on 160mg of Dilantin and 75mg of Phenobarbital also. First we tried adding the Vigabatrin at night, but after giving him his dose of Phenobarb and Dilantin, he'd cry for hours. We're trying to give the Vigabatrin during the day at a time in between the other two meds to see if he tolerates it...
side effects: Unknown, Daniel was in the Pentobarb coma
comments: We started the Depacon at 60 mg 3x per day. The doctor was hoping to get Daniel's level somewhere between 150 - 200. By the 9th day, the levels had never increased and we were up to 600 mg 4x per day. My husband and I decided to stop this drug due to the possible side effects with a dose this high.
Alternative Treatments (in chronological order)
Pentobarbital Coma
details:
still being used:
effectiveness: Positive
positive effect: This stops the seizures
side effects: Daniel is forced into a coma
comments: When the seizures become out of control, or Daniel goes into "status" then the Doctor's have to put him into the Pentobarbital coma to stop them. After giving his brain a rest, we load him up on the next medication that we're going to try and bring him out. This is very drastic and terrifying as parents to have to do...
Surgeries (in chronological order)
Placement Of A Broviac Cathetar
details:
surgery date:
effectiveness: Positive
comments: Of course, this hasn't helped the seizures directly, but we now give him all his meds intravenously which is more accurate and helps to maintain his levels. It also is wonderful for his bi-weekly blood draws.
Personal Notes
Daniel started having seizures at 6 weeks. He's been hospitalized 5 times and they can't get them under control or even stable. He was diagnosed with polymicrogyria from an MRI. We've been told that this condition is causing the seizures and that medicine usually is not effective in controlling them. But, we have to try... He's had a PET scan, SPECT, MEG, Video Telemetry and several EEG's. Our Neurologist believes the seizures to be originating in the right front and then generalizing. He is having difficulty finding doctor's to support his theory. The general consensus is that the seizures are probably coming from the right and left, making Daniel not a candidate for surgery in their opinion. We're working on getting referred to UCLA where they will do some studies of their own and possibly mapping with a sub-cranial EEG. This should tell us specifically where they're coming from. Daniel appears very normal, healthy and happy. He is 4 months old, smiles, tracks visually, talks a little and plays a little moving his arms and legs. He is having some trouble meeting other milestones, but we remain hopeful. Update 2/11/99: Well, to update... Daniel went to UCLA where we learned that he is positively not a candidate for surgery. He has now been labeled with Cortical Dysplasia, meaning that his brain did not form right. After receiving horrible news regarding Daniel's prognosis, we came back home to our Doctors in Sacramento. We're now trying Depakote and Klonopin. Our Doctor's remain positive and Daniel is a fighter... Update 3/7/99: On February 25th we lost our son Daniel. At last try, we were giving him doses of Depakote at 600 milligrams four times per day. We never could increase his level high enough, it hung around the 40's. The decision was made that all we had left to do was make Danny comfortable as the seizures overcame him. Daniel passed away very peacefully in my arms. Our son is now in a better place, one where he can play as all babies should. Update 10/11/00: It's been over a year since the death of our son. Not a day goes by that I don't feel my son with me. He's inside of me, not just his memories, but him. I feel his love and his spirit. I can hear his laugh. I feel his hugs. Our son taught us what it means to live. To appreciate all you have - your struggles and your triumphs. Daniel taught us love and my husband and I will carry this forward. I miss my son terribly, but it's the physical that I long for. I know he is safe and healthy and waiting for us. We have a beautiful new baby boy - Zachary. He humbles me with his wonder and joy. Zach has a very special big brother who watches over him. Daniel is our littlest angel...
Contact info
For additional information, please send e-mail to Michelle (michelle_ceccato@hotmail.com)
