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6 yr. old son change in epilepsy

Dee
Dear Doctor RPS:

I
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Avatar universal
Dear Dee:

Tic get worse when the child is stressed, fatigued, etc.  Since your child was stressed, the tics would increase.  The strep throat is likely just a strep throat and not be worried about an autoimmune syndrome causing tourette's (PANDAS).  Is your son a carrier of strep?  Has he had multiple strep infections in the past?  What is his ASO titer?  If every child who contacted strep throat developed tourettes, there would be no loss of business in the neurology clinic.  These diseases called PANDAS have to be further worked out as likely they only represent a small portion of the tourette's population. Remember the phenomena of tics waxes and wanes and the type of tics can change over time. I really suggest that you sit down with your pediatric neurologist and discuss the issues that are bothering you and your husband.  You need to have confidence that your son is being treated correctly.


Sincerely,

CCF Neuro MD
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Dee
Dear Dr. RPS:

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
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Avatar universal
Dee
Dear Doctor:

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
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Avatar universal
Dear 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
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Avatar universal
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
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