Epilepsy

[melissa17s]

Hello,

I noticed that there were previous epilepsy threads, and hoping maybe to talk with some of the mamas that have a child with epilepsy.  

I have a 9 year old with epilepsy.

My Ds was diagnosed over the summer with benign rolandic epilespy by Ped., but Neurologist says, no just epilepsy.  We have had our lives somewhat disrupted, but it is also relief to know what ds has going on so that we can try to treat and work with it.  He is currently taking Stavzor to control seizures (he has had 2 clonic-tonic,partial, and possibly absence that the dr. refers to as "aloof").  His seizures are on his left side in the rolandic area and maybe left frontal lobe.  He has disabilities in reading and writing.  Neuropsychologist said he has ADHD and dyslexia, although Neurologist says these can be symptoms of epilepsy. Neuro feels if we treat the epilepsy, then the disability will resolve.  He started special ed  to help catch up with his delay two weeks ago.  He has also started occupational therapy to work with the writing issue because he has fine motor issues specifically with writing.  

So, for the most part we think he is being treated, but have some questions relating to medication and behavioral side effects.  Since he has been on it, he has changed.  He used to passively resist, but we figure that was actually seizure activity.  Now he is loud especially at school in large group settings.  At home, he also has temper tantrums or gets very inflexible if he does not like a situation; which is new because he used to be pretty easy going.  At home and now at school, he feels that he should get what ever he wants when he wants if, and  If he does not he rants and threatens bad behavior.  Neuropsych felt he was about 2 years behind behaviorly.  One of the things recently that sets him off is food.  He no longer likes many of the foods that he loved before.  He is very hungry on the stavzor, but also very picky.  Are his behaviors typical of the medication, the epilepsy, symptom of ADHD, or just  a challenging new phase in his own natural development?  

I would appreciate anyones thoughts or if share your experience with epilepsy.

Thanks

[anj_rn]

My DD has seizures, but is well controlled on Keppra. She has been on it for a little over a year, without any problems.  However, lots of kids have side effects from seizure meds.  I would definitely call your neuro to talk about the side effects.  Also, when was your son's last valproic acid level done?  If his levels are too high, they might just be able to lower the dose.  We walk a fine line of a high enough dose to control the seizures, but as low as possible to minimize side effects. 

My only other thought is that the most common symptom of valproic acid (stayzor) is GI upset, so he could be walking around with a very cranky tummy/intsetines, and not be able to verbalize it well.

[dbsam]

My daughter, now 6.5yo, was on Depakote for 3.5years.  The meds controlled her seizures but definitely changed her behavior.  I was told by the neuros, repeatedly, that her 'issues' were not caused by the anti-seizure meds but were caused by the seizures or some other condition (anxiety, OCD, depression, etc.).  I didn't think this was true since she had been having seizures for years prior to the meds but I couldn't be sure since she was so young.  We've since weaned her off the Depakote and she is a different child. 

Like anj_rn suggested, I would speak with your neuro.  Maybe they will consider reducing the dosage or changing meds.  It's a tough situation.  In our case, the meds were controlling the seizures so the four neuros we saw didn't want to switch meds.  However, they were quick to suggest additional meds to deal with the behaviors. 

[melissa17s]

Thanks for the ideas so far.  I will be talking to neuro about this.  He had his levels tested at the beginning of Oct or end of Sept.  Neuro said that they were high, but considered them ok as long as we were getting seizure benefit and seeing progress in school.  He has had his levels adjusted twice.  He started on 2 250 mg pills and then had a lot of side effets, like dizziness, fatigue, moodiness, and headache.  After 1 or 2 weeks, neuro switched to 1 250 mg.  for a month, but did not stop "aloof" and "frozen" seizure activity.  

So in midSeptember ds and neuro decided he needed to take 2 pills again.  At the same time, neuro gave us referral to neuropsych exam, which pulled him out of school for multiple appointments, and school started assessing for special ed intervention, which also pulled him out of regular classes.  Initially, we blamed poor behavior on lack of routine and many changes.  Now, since Nov. his classroom teacher complains every time I see her.  His special ed. teacher says he is great.   When classroom teacher asks questions, he always tries silly answer first, he has started talking loud at inappropriate times, needs teacher close by to do work, etc.  

He has also started making weird noises.  He told me he can not control the impulse- got sent out of the classroom one day for purring.  Said he had a seizure in the hall and was frozen; teacher forgot him and was there for an half hour instead of the 1 minute time out she told him to take.  Teacher said he clicked his tongue the other day through time period of taking an exam and continued after the exam was done.  He says he still regularly has seizures where he is frozen.  One thing to note, is that his teacher also has epilepsy, but her seizure are different than his.  She has a hard time catching his, and that means we have less concrete info during school time for neuro.  The teacher has requested the principal and aea come observe his behavior for 1/2 intervals to help document.  

At home, he goes through spurts of being very loving and angry.   If he wants something, he is very demanding. He has little patience. He is picky with food.  At Thanksgiving would only eat mashed potatoes and fruit; instead of saying he did not want to eat a food, he would melt down very loud.  He has not complained of tummy aches, but he is constantly hungry.  

[dbsam]

Originally Posted by melissa17s 

He has also started making weird noises.  He told me he can not control the impulse- got sent out of the classroom one day for purring.  
 

 This is so strange and I have never heard it from anyone else...but my daughter also made strange sounds.  She always told me she couldn't help it.  Often she was a cat, other times she would sort of grunt, squeak, etc and sometimes have jerky movements or put herself on the floor.  It seemed to happen most often when she was anxious or something was bothering her in a sensory way.  I didn't attribute it to the meds but it happens rarely since being off the Depakote - and happened frequently while on the meds.  (Although a few weeks ago the teacher told me she sat and purred instead of completing a math test.  Our plan, if it continued, was for me to come into class during math tests and assist her.  But it hasn't happened again.)  I never recorded the episodes on video but wish I w/h to show the neuros and the psychologists.  The neuro suggested it was part of the OCD.

couldn't multi-quote...

"Said he had a seizure in the hall and was frozen; teacher forgot him and was there for an half hour instead of the 1 minute time out she told him to take.   ""  

This is horrible!

My daughter sounds much like your son.  She also melted down and reacted emotionally to situations, like food choices.  Once again the doctors told me it wasn't the meds but said she was depressed.  However, she wasn't like this prior to the meds and her behavior is not as severe now that she is off the meds.  She still does it sometimes - I think the meds intensified everything for her.  I also think she was very frustrated and living in a fog.  Do the anti-seizure meds affect your son's memory or make him confused?  My daughter couldn't remember anything and was confused - I would say 'put your shoes by the front door' and she would respond 'where is the front door?'.  We were never sure if the confusion and memory issues were caused by the seizures or meds.  In her case, I feel it was the meds since she lived with the seizures for a couple of years prior to meds and was not like this.

Edited by dbsam - 11/27/10 at 8:48am

[melissa17s]

dbsam, 

I do think your dd's situation sounds similar to ds's, too.  The neuro thought ds was having seizures since he was 3 or 4, but that we equated it to personality traits or normal boy behavior when it was not.  When he was young, he used to have "night terrors", but instead of crying, he would laugh.  We thought we were lucky because instead of having an inconsolable child, ours was giggly.  Neuro thinks the laughing was seizure activity.  Ds was an easy going kid most of the time with a small stubborn streak before the meds.  Now he is stubborn and and not so easy going unless he "likes" what is going on.  

Short term memory has been a big problem before the medication and now on it, too.  He used have problems with memory because of short partial seizures (4-5 seconds) that would occur in clusters. He would not fully catch the information, so he was not able to process.  Now the neuropsych said he as weak short term memory on iq test.  He needs to have a visual picture in his mind or see it to process information.  He has problems with random words and sorting.  It has been difficult for him with reading because he does not understand phonics, and has to memorize words.  On days he was having seizures, he would not be able to recognize familiar words, like an, the, yet,...   We were hoping that medication would help him process better, so phonics might make sense.  Special Ed teacher is working hard with learning phonics, although school has been trying since kindergarten... just does not make sense to him.  The memory issues were attributed to the neuropsych's dx of adhd as well as dyslexia.  Neurologist does not want to treat for adhd with more meds because he feels these are symptoms of epilepsy and if we get the epilepsy under control, that it will resolve.  I keep wondering, if we need a different med., but other options are few because ds is part Asian; the Carbamazepine family are ruled out.