Behavior/Personality Changes with meds?

[LyLMyssChaos]

My 4 year old has been on generic Trileptal since March. Although it has wonderfully controlled his seizures(we have only had 1 episode since March 13) I am not sure he should stay on it. We have been dealing increasingly more evident behavior and problematic personality changes. My once very reserved, complacent, relaxed little boy is now VERY aggressive, violent, irritable, argumentative and quick to anger. He seems to be very anxious, tempremental and bursts into tears at the drop of a hat. Not only does he cry about EVERYTHING, he gets to the point of near hyperventilation. He also seems to have difficulty concentrating or maintaining attention. He once could play with his toy cars for hours and now can't sit still for more than a few minutes. At his last appointment, the neurologist noted that he was sitting on the table, unable to keep his leg still, but was yawning at the same time. We also noticed this week that he has developed canker sores.

He sees the neurologist next Thursday and I am going to bring all of this to her attention, but I am scared of taking him off of a med that worked so well at controlling his seizures. I just can't imagine this "new personality" is going to do well at school in the fall.

Has anyone else experienced this type of change in their child with this or another med?

[msuder0583]

Well I can't speak for a child but I can imagine that its possible for adults and children to have similar side effects. For each of my meds (Lamictal, Topamax, Keppra) I have different side effects. When I was on just the Lamictal I was fine, but once the Topamax and Keppra were added on thats when I can start to relate. Many ant-convulsants can cause mood swings, depression, violent behavior (hence kepprage from keppra), lack of motivation, speech and memory problems, tiredness, anxiety, panic attacks, and many more. So don't think its just your child that is going through this. Most of us with epilepsy do, and its tough. Very tough. Good luck to you, cause if its hard on adults it must be terrible for a child

[hootie]

My son has been on depakote for about 1.5 years. Each time we increased the med he would get irritable and have trouble sleeping for a few weeks. In March, his doc wanted to increase the med again by one more pill per day due to his EEG result. Quickly after, he became very irritable, defiant, stopped talking (he is autistic and has a limited vocabulary already) and stopped playing with toys. He got kicked out of school twice in one week (never happened in the 9 years he has been in school) for uncontrollable behavior. I reduced the dose to the previous amount and he went back to his normal self. Now the neurologist wants to combine drugs...not sure if I want to do that.

Hope this helps.

[SevenC]

My son (8 years old then) was diagnosed with epilepsy last fall and was started on zarontin/ethosuximide. It caused MAJOR behavior/mood changes. Mostly just a defiant, angry attitude. Scared the heck out of me! But within a few months, his body adjusted, and now he is right back to normal. He ended up having a great school year. So definitely mention it to your doctor, but hang in there. It took our son around 3 or 4 months to get back to himself. I know you're approaching the same time frame and it's getting harder. This is such a stressful time for little ones. They don't understand why they have epilepsy, is it their fault? My son has asked me more than once "Mom why do I have epilepsy? Why do I have to take medicine?" etc. etc. Alot of the anger and sadness has nothing to do with the medicine. I really hope your doctor can help. Best wishes for your little one.



** Also, if he's in a public school, make sure they accomodate for his condition. By law they have to. He can have a 504 plan/IAP set up based on medical conditions. My son has an IAP which allows him repeated directions and extended time on tests. It was a life saver for him this year when he had to take the standardized test. It may seem not needed for preK or kindergarten (and they may not even issue them that young) but make sure the school knows. Hoping it all works out for you

[LyLMyssChaos]

As of now, he has been on the medicine for 4 months, so I really hope it will decrease. I am already on top the IEP/504 thing. He is attending a charter school and one of my other children that attend there also has a special need (autism/sensory processing disorder) so we've run the race with them before. I am currently working on trying to figure out what accommodations he directly needs because so far their response has been "we've got a lot of kids with epilepsy at the school and they don't need that." Quite frankly, I don't care what those kids need, I know what MY child needs.

[msuder0583]

i agree with you. epilepsy and meds affect different people in different ways and in no way should one person be generalized by the epileptics (not the pc word anymore but im choosing to use it) as a whole. especially if there is another condition associated with it: ADD, ADHD, anxiety, etc. cause i personally have a social anxiety disorder so my case may different than others, and your son may have another issue stacked ontop of the E. you never know....have you seen a neuropsychologist for any kind of testing yet?

[LyLMyssChaos]

Not yet. This only started to come out after the seizures started so all the focus has been on the epilepsy and it's cause. I'll see what the neurologist says next week when we see her.

I am really hoping it's not issues that are stacked, I really don't know if we can juggle one more diagnosis in our house. I already have a child with Celiac's Disease and lactose intolerance, another child with Asperger's and Sensory Processing issues, then I have Fibromyalgia and Complex migraines with stroke like phenomena and my son's Epilepsy (and lactose intolerance.)

[LyLMyssChaos]

Well, the neurologist is going to switch him to Depakote sprinkles and see what happens. He will be on the Trileptal and Depakote together for about a month and then they'll take away the Trileptal after doing some labwork.

[ethomom]

Hi there,
I feel your pain. My 7-yr-old daughter has had mal petite seizures (absence seizures) since age 4. She is on ethosuximide and takes 6ml in the morning and 7ml in the evening. Ever since she started the meds she has slowly changed into a kid nothing like she was prior to this. Recently, she had more seizure activity than normal so they increased her meds to the above dosage and she is a mess. When I say recent, it was a few months ago so it should be well settled into her system. She cries at everything, is sad at the drop of a hat, is defiant and has mood swings like a roller coaster. I feel so badly for this little girl since she has no control. She is the sweetest, kindest soul and for this other personality to show is just heart wrenching. I just don't know how to deal with it or what to do. So, my heart is with you....

[bazpa]

Well I understand, and I am 47. I am on topomax. I am quick to anger, moody, cry easily, cannot concentrate, or stay on task. I have always been very easy going, and it took a lot to make me mad. I could do several thing at a time. This is so frustrating to me that I cannot imagine how your poor small child must be feeling. My son was adhd growing up, and I will tell you-there was a constant battle with teachers and school. Many kids like him have weak bladders, and cannot hold it. He had a teacher in the second grade that made no exception to her rule of using the restroom during class. The second time he wet him pants in class, I went directly to the principal, and told him I would go as high as I need to go, and that when my kid needed to pee-she had better let him go. How humiliating to let a child wet there pants in front of the whole class. I still get steamed when I think about it. I hope there is a different medication that you can try. For me so far out of the 6 that I have tried in the last 10 months, they have all made me cranky, and unable to concentrate, but I at this point don't know if I am wanting to try a different on again.

[ethomom]

Hi,
I can't imagine! I often sit and wonder if I did something different in my pregnancy she wouldn't have this. But I know I can't think like that. I am waiting to hear back from Dr...something tells me her meds might need to change... Wishing you well....happy thoughts x

[simone]

My child took meds for his seizures(between the ages of 1-2) but did not have epilepsy, though he still had to take meds for 2 years. During that time he stopped talking making eye contact and many other social interactions.We were told he had autistic behaviour .At 3 yrs old we started to take his meds away slowly over 7 weeks, 3 days after he was finished i had a new child, he gave eye contact he stopped playing with just cars he started to speak.The doctor in charge refused to except that his meds had caused any of these symptoms, but since talking to other doctors they say yes they did.
My son is now nearlly 8 and it has been a long slow road to get him back to where he should be in his development, he missed so much during those 2 yrs.We need these meds because they do prevent the seizures but do we know or the doctors what damage they cause and other problems that they bring.
Mt heart goes out to all you parents that have children with epilepsy that still need to use the meds. You know your own child best so do not except any doctor telling that the meds can not cause any side affects.

[ethomom]

Hi Simone,

Amazing story! It's so hard to listen to one side or the other. Meds or no meds? It's very frustrating...wish this came with a manual.
~T

[Shalinee]

Hi- not sure if you are still reading this ...but even my son who is 9 yrs has major mood swings, he has partial seizures and is on medication since 4 months. We're based in india not all drugs are permited here - he's on epilex chrono and lavera....he is irritable, angry, emotional, violent and does have issues concentrating......i believe prayer is a powerful tool against this condition and it works. Read Mark Chapter 9 from the Bible...
bless u

[ethomom]

Thanks for replying. It's good to know we are not alone out there....My daughters moods have evened out just little. They have adjusted her meds, so we shall see. I pray your days get better, I really mean that.
~T

[LyLMyssChaos]

Coming back to update a bit:

Well, we wound up switching him from Trileptal to Depakote Sprinkles. We eventually weaned him off of the Trileptal and he has been taking 250mg of Depakote Sprinkles twice a day. And now that he has started Kindergarten, the rage is back with a vengeance. We had an issue last Thursday where his teacher notified me that she had to remove him from the classroom so he wouldn't harm himself or others (he was throwing chairs, pushing other kids, screaming and just completely melting down.) He was fine at school on Tuesday and then I was called to the school not even an hour after I dropped him off because they were sending him home due to putting another student in a chokehold.

I just don't know what to do about this rage he has. I don't know if it's the meds, is it frustration or is it something else all together? He has been seizure free since June on the Depakote, but I can't have him turning into the Incredible Hulk either! I called his neurologist and we'll see what she says. He was due for an EEG next month, but maybe she'll move it up?

[ethomom]

I feel for you...that's just sad and awfully hard on you. Here's hoping the Neurologist has an alternative idea? I agree, when you weigh up the pro's and con's, I'd rather not have my child be on the destructive side. so sad...man it's heart breaking..
Thinking of you...

[hootie]

Lylmyss--

This is exactly what happened to my son when he went from 5 caps of depakote sprinkles to 6 per day...crazy, aggressive, tipping chairs, hitting people...my son is over 100 pounds.

Depakote messes with folate metabolism. I started giving my son folinic acid in larger amounts and the added the 6th capsule in and now he is not having any of the above issues. I did not use folic acid as it may not have the same effect.

You could talk to your son's doc about this...

[momofthree]

Hang in there, it is so hard, it seems as if Hootie does have some practical advice. My son is on Keppra and each time we raise it (which is often) we go through sleeplessness, mood swings, and irratability, all the normal stuff and it is heartbreaking and frustrating. In the end though it does level out, but it can take a month or so. In the scheme of things I guess it is better than having Tonic Clonic seizures because then they have no life at all, nor do we. The Keppra has provided us with some comfort, because it works!! None of us are alone in this, although it often feels as if we are. Good luck to you.

[LyLMyssChaos]

I just wanted to update on Theo's situation. The aggression eventually came back down to a normal level and we have not had anything more than a "typical 5 year old boy" would have since October. We also have had NO seizure activity since October. We are so excited to have broke the 3 month of seizure free mark.

In 24 days we will be at 1 year since the first recognized seizure and we have not yet had to use the Diastat. He is currently taking Depakote Sprinkles 125MG 2 capsules 2x a day and it is controlling things. We've recently seen some more moodiness and it might be due to time for a dosing increase. He sees the neruo at the end of this month for another review.