DEAR DR. GOTT: My 20-year-old granddaughter was diagnosed with Dandy-Walker syndrome at the age of 2. By the time she was 12, she had mild hydrocephalus and petit-mal seizures. We have tried antiseizure medications, which have not worked. Some meds have put her in a mental-health facility. She was also given Haldol, which made her catatonic. She had an acute reaction. She has a pediatric neurologist, but I feel that without any progress, this is as far as he can go. She has been going to him since she was 22 months old.
She was withdrawn from all medications two weeks ago, and all that she has been prescribed for a headache before her seizures was Tylenol and Ativan, which she takes following a seizure. She had three seizures on Saturday and one on Sunday. Thank you for any help you can provide.
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Dandy-Walker patient has uncontrolled seizures
Symptoms may indicate grand-mal seizures
DEAR DR. GOTT: I am writing about someone I know. He is 40 years old and has had the following symptoms for at least the past 10 years: fits of rage, seizure-like episodes (unconscious, body goes rigid, convulses, wets self, confusion, weakness and vomiting), hand tremors, neck and shoulder pain, and self-confessed fainting spells (although these may have been seizures). Two times following seizures, tests gave no indication of having had a seizure.
Do you have any suggestions about what this may be?
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Doctors offers vague criticism
DEAR DR. GOTT: Your article on seizures was totally garbled and seriously incorrect in places. I’m an epileptologist.
DEAR DOCTOR: I apologize for any errors that may have appeared, but your brief note is not very helpful in explaining how and where I went wrong, if indeed I did. Perhaps next time you want to tell someone he did wrong, you could elaborate just a bit.
For my readers, an epileptologist is a neurologist who specializes in epilepsy.
Seizures without a cause?
DEAR DR. GOTT: I am writing to find out what you think we should do, because all the specialists are baffled about my husband’s illness. Six months ago, he began to have seizures for no known reason. He was in ICU for three weeks with a diabetic specialist, an endocrinologist and a neurologist on his case. They ran every test possible to rule out this or that for the cause of the seizures. All tests came back negative. His glucose is under control. He continues to have “spells,” with symptoms of lead feet, sweating legs, headache and the smell and taste of burnt beef in his mouth.
He takes synthroid, 175 mcg, once a day. I am wondering and have asked if there is a possibility of him having a reaction to this medication. It falls on deaf ears.
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Friend’s actions confusing
DEAR DR. GOTT: A friend of mine is 81. For the past several months, she has been experiencing flailing of the arms and legs, arching of her back and has no control of the actions. I thought along the lines of seizures, but she is awake through all the episodes and knows exactly what is happening. Would you have any idea what could cause these symptoms?
I read your column every day, and you have helped so many people. I hope you have an answer to this puzzling physical problem. Thank you.
DEAR READER: There are a number of medical conditions I considered when first reading your letter. The first was Tourette’s syndrome. This was easy to rule out, however, because diagnosis, in part, is confirmed in the presence of both motor and vocal tics that can but don’t necessarily occur at the same time. Then I put on my thinking cap and realized your friend is likely suffering from seizure activity. I will explain why. [Read more...]
Daily Column
DEAR DR. GOTT:
I haves suffered from seizures for over 25 years and have traveled to see many specialists at the Mayo Clinic, the Cleveland Clinic, IU Medical Center and the Emory University Neurology Department without success. Fortunately, a local neurologist determined a “cocktail” of medications that have kept me seizure free for over six years. Different trials with generic anticonvulsants have proved unsuccessful. Unfortunately, my insurance is about to expire. My husband is about to retire and on Medicare, but I have several years before I am eligible for Medicare.
Blood tests and the cost of my medications are beyond what we can afford. I tried several avenues of contacting drug insurance companies and with the Montel Williams Program, but was turned down.
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Brother’s ‘absences’ leave sisters worried
DEAR DR. GOTT: My sister and I are concerned about our 75-year-old brother. He has minor memory loss but for the past year it seems to be getting worse. During conversations he simply stops talking, gets a blank look on his face for a few seconds and then starts talking again about a different subject. Very often he can’t find the right words to say or has trouble remembering certain words. When we try in a subtle way mentioning this to him, he gets very defensive and has even accused us of thinking he can’t take care of himself.
We’ve said a few things to his wife, but don’t want to discuss it too much with her any more because she’s a hypochondriac. She just goes to church, falls down and says the Lord has healed her. She is no help in this situation, even though she’s 10 years younger than our brother. [Read more...]
Daily Column
DEAR DR. GOTT:
Our son, now 47, was severely brain injured in a bike vs. truck accident 28 years ago. As a result, he also suffered grand mal seizures. He was put on 100 mgs of Dilantin twice a day. It was then increased to three times daily. He has been seizure-free for almost 20 years now. My son is otherwise very healthy. He lives with us but has become quite independent and even drives his own car.
Our family physician retired and our new (young) family physician said the decision was ours, but we should think about stopping the medication. We’re hesitant because we dread the possibility of seizures again. What are your views on this situation?
DEAR READER:
Most neurologists I know often remove patients from Dilantin if they have been seizure-free for several years. This must be done by gradually reducing the dose and must be supervised by a neurologist. Only this type of specialist can tell you if it is appropriate to discontinue the Dilantin.
You and your son need to speak to his neurologist about the possibility of stopping the medication, the possible risks and benefits of stopping versus continuing and whether your son is indeed a good candidate for removal of the Dilantin.
If the specialist believes it is best to stop the medication, he or she may recommend testing before, during and/or after the process. This will provide appropriate monitoring of your son for any adverse effects from stopping the Dilantin, such as return of the seizures or abnormal brain function.
I am not a neurologist and am not familiar with your son’s case. His neurologist is his best source for further information.