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Neurology (Expert Forum)
6 yr. old son change in epilepsy
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6 yr. old son change in epilepsy
by Dee, Jan 07, 2000 12:00AM
Dear Doctor RPS:
I’ve got more questions due to a change in my son’s condition. I posted many questions in regards to his complex partial seizures and medication treatment. He was referred to UT Southwestern for a complete evaluation and a neurologist repeated the MRI and EEG. It should be worth noting the first MRI showed an arachnoid cyst that was outlined in the report as “a fairly well circumscribed oval cystic lesion” and goes on to give location and size of 2x1.5 cm. Now, the latest MRI, which is nine months later, shows no cyst, according to the neuro, but she thinks she can see an area where they were talking about. I’m confused. The first report was stated so clearly, and yet the second was just the opposite. The second MRI was repeated to rule out the possibility of the cyst being the cause of the seizures. Also, the EEG shows he now has “primary generalized” seizures and constant, almost non-stop spiking. She gave us only two choices of drugs – Depakote or Lamictal (sp?). I’ve read horror stories with both and he did not fair well the first time on Depakote (severe incontinence and rage attacks). She indicated the video EEG he had nine months ago was either not interpreted correctly or the machines were off. I asked if possibly the complex partial, which showed constant activity in the right occipital area, could have spread to a generalized condition, but she didn’t seem to think so, although it was possible. I’m really confused now. His Tourettes symptoms are pretty pronounced now, the Tenex is not working, and he had four seizures in 24 hours over Christmas break. I don’t know what to make of all this. This is the third neuro and this is the third different diagnosis. Any input would be helpful Dr. RPS.
Thank You,
Dee
I’ve got more questions due to a change in my son’s condition. I posted many questions in regards to his complex partial seizures and medication treatment. He was referred to UT Southwestern for a complete evaluation and a neurologist repeated the MRI and EEG. It should be worth noting the first MRI showed an arachnoid cyst that was outlined in the report as “a fairly well circumscribed oval cystic lesion” and goes on to give location and size of 2x1.5 cm. Now, the latest MRI, which is nine months later, shows no cyst, according to the neuro, but she thinks she can see an area where they were talking about. I’m confused. The first report was stated so clearly, and yet the second was just the opposite. The second MRI was repeated to rule out the possibility of the cyst being the cause of the seizures. Also, the EEG shows he now has “primary generalized” seizures and constant, almost non-stop spiking. She gave us only two choices of drugs – Depakote or Lamictal (sp?). I’ve read horror stories with both and he did not fair well the first time on Depakote (severe incontinence and rage attacks). She indicated the video EEG he had nine months ago was either not interpreted correctly or the machines were off. I asked if possibly the complex partial, which showed constant activity in the right occipital area, could have spread to a generalized condition, but she didn’t seem to think so, although it was possible. I’m really confused now. His Tourettes symptoms are pretty pronounced now, the Tenex is not working, and he had four seizures in 24 hours over Christmas break. I don’t know what to make of all this. This is the third neuro and this is the third different diagnosis. Any input would be helpful Dr. RPS.
Thank You,
Dee
Doctor's Answer
by CCF Neuro[P] MD, RPS, Jan 07, 2000 12:00AM
Dear Dee:
As we discussed before, Tenex is not first line treatment for Tourette's although some may begin with this medication as your son is young (I would and so would one of my mentors Dr Erenberg). It might be time to consider another medication, but I would first resolve the epilepsy problem.
Without seeing the MRI I really cannot comment on the reading. The initial reading of an arachnoid cyst the size described would be difficult to miss. The reading might have been faulty in initial time around, or the last reading might be incorrect. Arachnoid cysts can induce seizures but the correlation with the EEG and MRI would be so congruent that the diagnosis would be evident. A very small percentage can induce intractable seizures and surgery would provide relief. Since the question of whether it is present is up in the air this is of no help to you. Most of the time, arachnoid cysts are found by accident and cause no problems, even if they are as big as described. But every patient is different. I think I would have the scan reread along with the first scan (ask for copies of both). It may be that the arachnoid cyst resolved on it's own (rare but not unheard of).
Horror stories, I can tell you horror stories about any medication and the PDR and adverse effects division at NIH is filled with horror stories. One must weigh the pros and cons with any medication, realize that side effects are individual and usually not common, can be prevented by careful management in some cases, etc. I would not react so violently by what you have read as many times things are not read in the context of what really happened. Don't throw the baby out with the bath water. We have used both medications for long periods of time and have great records concerning seizure control. I don't know where you read about lamictal but this is becoming one of my favorite medications as there are few side effects and the control (in the correct cases) is wonderful.
The transformation from partial to generalized is not unheard of, but I would further investigate this occuring. Get the records from the other reading and have someone compare the EEG. Off-hand I would believe the UT epileptologist over a non-epileptologist, but nothing is written in stone in medicine that the EEG reading was correctly read in either case. Constant spiking does not mean generalized. What generalized means is that the abnormal synchrous activity is coming from both hemispheres at the beginning of the seizure event. The medication of choice for generalized seizures is valproate. Valproate would be contra-indicated if your son had an underlying metabolic disorder. There are other medications out there but the best would be the choices given you.
So, what I would do is get both records of MRI and EEG recordings. Take both sets to another epileptologist, peferred pediatric epileptologist and find out if your son has generalized or partial seizures. Then chose the proper medication for the seizure type and see if his seizures get under control. It may be that the last opinion is correct and that is why your son's seizures were never in control?
Sincerely,
CCF Neuro MD
As we discussed before, Tenex is not first line treatment for Tourette's although some may begin with this medication as your son is young (I would and so would one of my mentors Dr Erenberg). It might be time to consider another medication, but I would first resolve the epilepsy problem.
Without seeing the MRI I really cannot comment on the reading. The initial reading of an arachnoid cyst the size described would be difficult to miss. The reading might have been faulty in initial time around, or the last reading might be incorrect. Arachnoid cysts can induce seizures but the correlation with the EEG and MRI would be so congruent that the diagnosis would be evident. A very small percentage can induce intractable seizures and surgery would provide relief. Since the question of whether it is present is up in the air this is of no help to you. Most of the time, arachnoid cysts are found by accident and cause no problems, even if they are as big as described. But every patient is different. I think I would have the scan reread along with the first scan (ask for copies of both). It may be that the arachnoid cyst resolved on it's own (rare but not unheard of).
Horror stories, I can tell you horror stories about any medication and the PDR and adverse effects division at NIH is filled with horror stories. One must weigh the pros and cons with any medication, realize that side effects are individual and usually not common, can be prevented by careful management in some cases, etc. I would not react so violently by what you have read as many times things are not read in the context of what really happened. Don't throw the baby out with the bath water. We have used both medications for long periods of time and have great records concerning seizure control. I don't know where you read about lamictal but this is becoming one of my favorite medications as there are few side effects and the control (in the correct cases) is wonderful.
The transformation from partial to generalized is not unheard of, but I would further investigate this occuring. Get the records from the other reading and have someone compare the EEG. Off-hand I would believe the UT epileptologist over a non-epileptologist, but nothing is written in stone in medicine that the EEG reading was correctly read in either case. Constant spiking does not mean generalized. What generalized means is that the abnormal synchrous activity is coming from both hemispheres at the beginning of the seizure event. The medication of choice for generalized seizures is valproate. Valproate would be contra-indicated if your son had an underlying metabolic disorder. There are other medications out there but the best would be the choices given you.
So, what I would do is get both records of MRI and EEG recordings. Take both sets to another epileptologist, peferred pediatric epileptologist and find out if your son has generalized or partial seizures. Then chose the proper medication for the seizure type and see if his seizures get under control. It may be that the last opinion is correct and that is why your son's seizures were never in control?
Sincerely,
CCF Neuro MD
Okay, I won't throw the baby out with the bathwater. I know there is no "perfect" drug out there without risks. It seems the older I get the less risks I want to take. I have four children and taking risks has a whole new meaning for me, especially with my oldest two getting their driver's license - but that's another story. As far as getting another interpretation of the MRI's and EEG's, I've tapped out our area. There are other ped. epileptologists here, but they are affiliated with the doctors we've already seen and office politics won't permit us to go to them - I've tried. We've been to the three largest facilities and have seen one doctor at each facility and I've shared our experience with you from the beginning with each change. So, I had the bright idea to send all the workup done to a facility not in our state, but they felt it would be of no value to me to look at the workup without seeing my son, and I respect that. So, that leaves some unanswered questions, but nevertheless a decision that needed to be made and I decided we're just going to have to go with what we were told this last go around by this last doctor. I only wished I had thought to ask her at the time that since his first MRI was done with and without contrast and the second one was only done without contrast would that have made any difference in the comparison of the two? But, I didn't. The difference in the EEG's seemed more significant to this doctor anyway. So, I decided to give Lamictal a go. My son has strep throat now, his second bout since November, so I'm waiting till he's done with the antibiotic and feels better before starting it. We're to give him 12.5 mg qd for two weeks and then increase by 12.5 mg every two weeks thereafter. He will take no other medication with it. I know to watch for a rash, but I do that anyway with any drug since he's had that "bulls-eye" rash with Penicillin, Sulfa and Ceclor and for no reason at all other times. I guess I didn't ask any questions this time, Dr. RPS, but you've always been frank with me and opened my eyes when I needed it, so I take it you will again if you deem it necessary. All I can say is Thank You.
Dee
I hope the epilepsy come under control. The contrast will really make little difference as we look for anatomical abnormalities. Keep us informed.
CCF Neuro MD
I was hoping I wouldn't have to bother you with another question, but my husband and I have a nagging suspicion about something that's kept us up most of the night. As I said earlier, my son is taking Biaxin for strep throat (the 3-day culture came back positive). Prior to the onset of the sore throat I've kept a daily log since the beginning of December when I noticed tics were returning. During the entire month and up until the Biaxin his tics were quite severe. A trial of Clonidine showed no improvement as did the Tenex. He never really had vocal tics until December, but once they started it was quite disruptive to his class and some children had begun teasing him. It sounded like he was taking a loud, but raspy, deep breath. His motor tics was constant head nodding - very severe, jumping suddenly and stamping his feet. He even began after each vocal tic repeating the words, "right now" under his breath. He would mumble to himself, but wasn't aware he was doing it. Each day he got progressively worse to where I thought he would have to be home schooled for awhile. All of this was constant until the day after he started Biaxin - then, like magic, his tics practically stopped, every one of them. He's been on it four days now and since yesterday I've only heard two vocal sounds and nothing else. This morning there was no tics at all. We've read a lot about strep-related Tourettes. Could it be possible that all my son needs is a prophylactic treatment for strep and the resulting Tourettes? This is his second bout since November. Could it also be possible that strep could be related to his seizures, or am I way out in left field on that idea? The seizures (or rather jerking at that time) and tics started practically at the same time. You have no idea how we feel seeing him with no sounds and movements - the first in about 7 weeks. Set me straight here, please.
Thank You,
Dee