CHRISTOPHER'S RAINBOW
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Treatments and Therapies
Drug therapy is generally the first course of action in treating seizures. Other treatments include the Ketogenic Diet, Vagus Nerve Stimulator (VNS) and brain surgery. There is no "best" treatment; options depend on your child and the types of seizures they have. Children with the same diagnosis who are on the same medication often respond completely different. You and the neurologist should discuss what is best for your child and agree to a plan. Don't be afraid to question your neuro's recommendation. At one point, I had a very successful epileptologist tell me to add a 4th drug to Christopher's meds and I asked him, "How will you know what drug is doing what if anything?" He answered, "We don't, it's a crap shoot." My son had already lost his spark and some skills, I couldn't imagine adding another drug. We moved on to another neurologist.
No one knows your child better than you. Research, learn, question as much as you can so that you can be the best advocate you can be as you fight for your child's life. Search the internet for treatment options and available therapies. Here is a list of some of Christopher's:
Hospitals
May 2001 - Good Samaratin Hospital, N.Y. - Initial Diagnosis
June 2001 - Schneider's Children's Hospital, N.Y. - Hospital w/Epilepsy Unit & Epileptologists (Very Important)
July 2001 - New York Presbyterian, N.Y. - Epileptologist to confirm course of treatment
August 2004 - Montefiore, N.Y. - Epileptologist specializng in Lennox Gastaut Syndrome
December 2004 - Johns Hopkins, MD - Epileptologist specializing in Ketogenic Diet
April 2005 - Children's Hospital of Wisconsin (CHW) - Epileptologist who was able to help Christopher finally get seizure control.
November 2011 - New York Langone Medical Center, N.Y. - CHW Epileptologist left practice so we transferred closer to home.
Tests
Spinal Tap; EEGs; Woods Lamp Exam (To look for lesions indicative of Tuberous Sclerosis); Renal Ultrasound; Cardiac Echo and EKG; Brain MRI (To look for lesions); Metabolic Testing; ERG (to check for damage to vision as a result of meds).
Note - None of Christopher's tests identified the cause of seizures. To this day, his epilepsy is cryptogenic/idiopathic, which are fancy medical terms for "No Known Cause".
Medications
Phenobarbital; ACTH (Steriod shots in thigh 2x a day); Topamax; Zonegran; Vigabatrin; Trileptol; Lamictal; Depakote; Keppra; Felbamate; and Diastat (for seizures lasting longer than five minutes.
Other
Ketogenic Diet; Cranial Sacaral Therapy and lots of prayers.
Therapies
Early Intervention Program - to be eligible for services, children must be under 3 years of age and have a confirmed disability or established developmental delay (every state has such a program). After aging out, Christopher attended a Special Ed Preschool and subsequently Special Ed Kindergarten. He transferred into a regular first grade class with a full time Assistant, and has been mainstreamed ever since. Since the diagnosis, he has received Occupational and Speech Therapy on an ongoing basis (he received physical therapy in his early years); Swimming and Gymnastics to build core strength.
Recommendations
No one knows your child better than you. Research, learn, question as much as you can so that you can be the best advocate you can be as you fight for your child's life. Search the internet for treatment options and available therapies. Here is a list of some of Christopher's:
Hospitals
May 2001 - Good Samaratin Hospital, N.Y. - Initial Diagnosis
June 2001 - Schneider's Children's Hospital, N.Y. - Hospital w/Epilepsy Unit & Epileptologists (Very Important)
July 2001 - New York Presbyterian, N.Y. - Epileptologist to confirm course of treatment
August 2004 - Montefiore, N.Y. - Epileptologist specializng in Lennox Gastaut Syndrome
December 2004 - Johns Hopkins, MD - Epileptologist specializing in Ketogenic Diet
April 2005 - Children's Hospital of Wisconsin (CHW) - Epileptologist who was able to help Christopher finally get seizure control.
November 2011 - New York Langone Medical Center, N.Y. - CHW Epileptologist left practice so we transferred closer to home.
Tests
Spinal Tap; EEGs; Woods Lamp Exam (To look for lesions indicative of Tuberous Sclerosis); Renal Ultrasound; Cardiac Echo and EKG; Brain MRI (To look for lesions); Metabolic Testing; ERG (to check for damage to vision as a result of meds).
Note - None of Christopher's tests identified the cause of seizures. To this day, his epilepsy is cryptogenic/idiopathic, which are fancy medical terms for "No Known Cause".
Medications
Phenobarbital; ACTH (Steriod shots in thigh 2x a day); Topamax; Zonegran; Vigabatrin; Trileptol; Lamictal; Depakote; Keppra; Felbamate; and Diastat (for seizures lasting longer than five minutes.
Other
Ketogenic Diet; Cranial Sacaral Therapy and lots of prayers.
Therapies
Early Intervention Program - to be eligible for services, children must be under 3 years of age and have a confirmed disability or established developmental delay (every state has such a program). After aging out, Christopher attended a Special Ed Preschool and subsequently Special Ed Kindergarten. He transferred into a regular first grade class with a full time Assistant, and has been mainstreamed ever since. Since the diagnosis, he has received Occupational and Speech Therapy on an ongoing basis (he received physical therapy in his early years); Swimming and Gymnastics to build core strength.
Recommendations
- Find a neurologist who is also an epileptologist. An Epileptologist is a physician who is Board Certified in Neurology (or Pediatric Neurology, or Neurosurgery), Board Certified in EEG (Clinical Neurophysiology), had Fellowship training at an Academic Epilepsy Center, and had Postdoctoral training in Basic Research. Google for the ones in your area. The hospital he/she is affiliated with should have an Epilepsy Center, prefarbly a Pediatric Epilepsy Unit. If there isn't one in your area, travel if you can.
- Be prepared for all doctor appointments. Make a list of questions ahead of time; you should also list the items you may need from them, i.e. prescriptions, copies of test results, documents for school.
- Keep a daily log of your child's seizures (describe what they look like and how long they last), med doses and times, activities, therapies, diet, health and behavior. This may feel overwhelming at first, but it is one of the most valuable tools in helping you and the neuro team to see how meds, treatments, therapies, etc. may be affecting your child. Bring it to every neuro appointment. I still maintain a log for Christopher; it includes neuro appointments, blood test results, EEG results, etc.
- Christopher's seizures progressed from one every few days to several times a day. He lost the few skills he had obtained as the seizures progressed. It is imperative that your child get seizure control. Don't give up on hoping that you will find the right option for your child. It took years of many hospitals, neuros, drugs, therapies and tears before Christopher had seizure control. Only then, was he able to progress developmentally and academically.
- As a parent/caregiver, you will deal with issues that those of "typical" children don't have to. When Christopher was seizing, our questions were very basic, "Can he be in daycare so I can I work and keep my health coverage? Can we ever leave him with a sitter? Will there ever be a night when he won't have to sleep between the two of us? Nowadays, my questions include, "Can I let him go to a sleepover?"; "Is he ready to give up the full time school aide?" If you are caring for a child with epilepsy, you will question and do things for your child that others won't understand. I still tie my son's sneakers; although he can, he can't tie them tight enough to stay tied throughout the day. Don't let others intimidate you - that includes well meaning family, friends, doctors, neuros, educators.
- And above all else, have faith and don't lose hope. Your child needs you.
Getting wired for an EEG while being introduced to the Ketogenic Diet. No smile here!
Hospitals stays were frequent in the early years. Thankfully, we are down to one long term monitoring a year.
