Let me start out by saying I am not a physician, so please understand
the information I am listing is only meant to give you options to
explore. Do not start or stop medical treatments without the
supervision and advice from your physician.
My thoughts are with you and your family as you travel down this very
familiar road. My son suffered seizures and I spent the first years
of his life searching for treatments as well. His treatment included
ACTH, and I had to learn to give him an injection each day throughout
his 6 week treatment. It was not a fun task and in our case, I am
unsure as to whether this treatment helped my son in any way. That is
just my opinion about my son's treatment.
One thing that is worth exploring is a second opinion by another
physician, about the best treatment for your child. There are many
different medications and treatments that help control seizures, and
if you are feeling uncomfortable about any suggestive treatment, it is
wise to seek a second opinion.
A doctors choice of which drug to treat you with depends on what kind
of seizure you are having. Different drugs control different types of
seizures and people react to medicines in different ways. Thats why
it may take some time to find exactly the right dose of the right drug
for each person who has a seizure disorder.
Drugs that doctors prescribe most often to prevent seizures include:
Carbamazepine (brand name: Tegretol); clonazepam (Clonopin);
ethosuximide (Zaron- tin); phenobarbital; phenytoin (Dilantin),
primidone (Mysoline); and valproate (Depakene or Depakote). A rectal
gel form of diazepam (Diastat) maybe prescribed for use in stopping
cluster seizures or prolonged seizures. Some doctors may prescribe
pills of diazepam (Valium), lorazepam (Ativan), or clonazepam
(Klonopin) for the same purpose.
Newer drugs which are also prescribed for epilepsy include felbamate
(Felbatol); gabapentin (Neurontin); lamotrigine (Lamictal);
levetiracetam (Keppra), oxcarbazepine (Trileptal); tiagabine
(Gabitril); topiramate (Topamax) and zonisamide (Zonagran).
ACTH (adrenocorticotrophic hormone) administered by means of
injection, is usually prescribed as a treatment for infantile spasms
or with severe seizures that can't be controlled with other drugs.
This type of hormonal therapy has been used for approximately fifty
years in the treatment of infantile spasms.
ACTH is at the center of many controversies about the predictive
factors of good response from the treatment, optimal dosage, and
relative efficacy. As with any seizure therapy, you will find many
people feel ACTH is their saving grace and then you will find people,
as in my case, that aren't as eager to tout the claims of the therapy.
That is why a second opinion from another physician is probably your
best option in finding someone who will help you make this decision.
It is not an easy decision to make, but it is ultimately your decision
about whether or not this treatment is something that you want to try,
and there is no substitute for another medical opinion.
There are other types of treatments that you and your physician may
want to explore. In my son's case, pyridoxine (vitamin B6) seemed to
help stop his seizure activity. You may want to speak to him about
prescribing this type of treatment and whether he thinks it will be of
assistance in your case. I am listing a link to another family's
story about their child and the use of pyridoxine as a seizure
therapy, so that you can read about their experience.
Studies have shown that, in some cases, children may experience fewer
seizures if they maintain a strict diet rich in fats and low in
carbohydrates, so another type of treatment to consider is the
Ketogenic diet. As with the ACTH treatment, you will find many people
that feel this diet was their child's miracle and others that do not
receive any benefit from the diet at all. One thing is for sure, this
type of diet MUST be medically supervised by a physician and worked
out by a dietician. It must be followed exactly as prescribed as if
it were a drug treatment. I have an aquaintance whose daughter became
seizure free after starting the Ketogenic diet. I wish my physician
would have informed me about this diet during my search for my son's
treatments. It is an option that is worth exploring.
The vagus nerve stimulator is another alternative. Approved by the
U.S. Food and Drug Administration (FDA) in 1997 for use in people with
seizures that are not well-controlled by medication. The vagus nerve
stimulator is surgically implanted under the skin around the chest
area, sort of like a pacemaker would be implanted. A battery-powered
device is attached to the vagus nerve in the lower neck. This device
delivers short bursts of electrical energy to the brain via the vagus
nerve. On average, this stimulation reduces seizures by about 20-40
percent, but patients usually cannot stop taking epilepsy medication.
Because of the stimulator, patients often experience fewer seizures
and they may be able to reduce the dose of their medication.
If you try the standard medicines without success (or your daughter
has bad reactions to them) and depending on your child's type of
seizures, surgery may be a consideration. If your child has seizures
that always start in just one part of the brain, she may be a good
candidate for this type of treatment as long as the seizures are in a
part of the brain that can be taken out without damaging important
things like speech, memory, movement, or eye sight.
I hope I have given you information that you will find helpful in
making the decisions about your daughter's treatments. For more
information about treatment and local resources, contact the Epilepsy
Foundation of America, http://www.efa.org/index.cfm
I know from experience the helplessness you must be feeling, but hang
in there. I admire your persistence in obtaining all information, and
your daughter is lucky to have such a caring and concerned parent.
Keep asking questions and always explore all options, and I am
confident that you will find the right treatment for your daughter.
My prayers are with you and your daughter. Good luck.
It has been a pleasure to provide assistance.
Links of interest:
National Institute of Neurological Disorders and Stroke
Seizures and Epilepsy:Hope Through Research
Pediatric Epilepsy Center
Infantile Spasms, by Michael Wong, MD, PhD
Johns Hopkins Children's Center
Ketogenic Diet Effective in Treating Infantile Spasms
Infantile Spasms and Pyridoxine Dependancy
Ketogenic Diet FAQ
Personal information about effects on this mother's child
Vagus Nerve Stimulator
EPILEPSY in the 21st CENTURY:
New Medications and How They will be Administered
Information concerning he future of epilepsy treatment
Request for Answer Clarification by
18 Jul 2002 06:31 PDT
Thank you very much for your thoughtful answer.
Your thoughts have helped me in some aspects, but to be honest, I had
already found a lot of info on how ACTH works (and thats why Im a
little afraid). The same as you, I have plenty of info on Infantile
Spasms and treatments that have succeed and failed in controlling
seizures. But, as my question originally said, we have already (after
a long hard time) found the drug combination and doses to control
seizures, and she has been seizure-free for one year already (with
strong medication). The remaining problem is the abnormal EEG.
This is the information I havent been able to find by myself: Any
studies or researches about ACTH exclusively for use in Genetic
Epilepsy (Infantile Spasm is quite a different condition). Any studies
regarding the abnormal EEG even after the seizures were controlled.
I will revise the links you sent me (the ones I havent already been
trough), but if you can find any specific info about that, I would be
I hope your family is OK now. Its wonderful that you are trying to
pass on the painfully acquired knowledge.
A personal note: the girl is my nephew. Im conducting this research
parallel to her parents (my sister).
Thank you again!
Clarification of Answer by
18 Jul 2002 10:25 PDT
I am sorry, but most of the links about ACTH that I have found do have
a combination of information about treatments for infantile and other
types of seizures. However, when I list a source it is required that
I give recognition to the site, article, or personal link displaying
this information. By a quick glance of the links I listed, I can see
where you thought I concentrated on the infantile spasms when in
actuality I was really concentrating on all types of treatments for
seizure activity, which is a cause of abnormal EEGs.
One of the paragraphs where I included information about the
medication ACTH, said "is usually prescribed as a treatment for
infantile spasms or with severe seizures that can't be controlled with
other drugs." Since you did not mention infantile spasms directly, I
was focusing on the "other seizure activity".
Many of the treatments for infantile spasms are also prescribed for
other seizure activity. I am sorry if I did not clarify my
intentions, but by listing the link to "Mallories Story", I wanted to
you to read about Pyridoxine Dependency. It does not just associated
with infantile spasms. This vitamin B6 therapy is what I believe
stopped my son's seizure activity and I wanted you to read about the
therapy and the way it helped another family. Their child had
infantile spasms but my child had a genetic type of seizures. Their
child Mallory, according to this story is now seizure free and has a
normal EEG, as does my son.
Let me include this link so you can have more information concerning
this treatment. Please visit Epilepsy Action,
You will find information on how the child usually receives Pyridoxine
by mouth, but that the drug may be injected while the child is having
an EEG to see if the EEG becomes normal during or right after the
treatment. This treatment may assist your child in obtaining that
normal EEG you hope to see one day.
Depending on the child's situation, you may also get the normal EEG by
pursuing the Ketogenic Diet. The Ketogenic Diet FAQ that I listed,
has one of each case history, one child with infantile spasms and one
with a different seizure disorder. A ketogenic diet helped each one
of these children from suffering from different types of seizure
The Johns Hopkins link contained information about Ketogenic diet
helping children where ACTH treatments had failed. It is focusing on
the infantile spasm aspect however, so that probably wasn't the best
news release I could have chosen. But the as I said before, the
Ketogenic diet has been proven to help some children.
The link to the Pediatric Epilepsy Center and the article by Dr. Wong
was included because of the information concerning the controversy
over ACTH and also the facts about the abnormal EEG's.
When you mention alternatives, I mentioned surgery and listed the
links to the Vagus stimulator and the article., Epilepsy in the 21st
century, as a source of alternative treatments.
Because the brain uses electrochemical energy, any disruption of the
electrical processes in the brain will cause abnormal functioning, as
in seizure activity. I just wanted give you links to information that
may help you find a treatment for you to consider when making the
decision about the ACTH treatment, and in hopes that you could obtain
that highly sought after normal EEG.
I hope I clarified my research strategy for you, and I apologize if
you thought I was focusing on infantile spasms. Let me know if I can
be of further assistance. I will continue to search for information
that will help you, and will post anything I think may be of interest.
Thanks again and please accept my apologies for the confusion.