5 year old daughter just diagnosed with petit mal seizures

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Maddiesmommy

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This is all so overwhelming to me. I self diagnosed my 5 year old daughter. Thankfully I'm a teacher and spent extra time with her this summer. It came on so quickly. It started as a couple times a day seeing her stare off and cross her eyes. She would not respond to my voice. She was also suddenly having accidents. Her doctor thought she was doing it for attention. Within 1 month she was having around 15 or 20 episodes a day that I was able to see.

A pediatric neurologist diagnosed her with petit mal seizures. She had 2 during her EEG. I was so relived that someone finally saw what I saw. My husband had never even noticed 1. My friends said she was rolling her eyes at me or just spacing out. I just knew something was wrong!

So... She has been taking zantharin for about 4 weeks. Her siezures have stopped! But....She is hyperactive and aggressive. She said she has a "dark side" now. She hits herself if she gets in trouble for doing something wrong. She just seems angry. I also have a 2 1/2 year old daughter. she is not angry all the time. But when she is it's really bad. She never used to be this way. I don't know if we should deal with this medicine since the alternatives seem worse.

I went to her neurologist yesterday and he wants to switch her meds. He put der on Depakote 125mg sprinkles. After reading about possible side effects of the medication, I am hesitant to put my baby on this harsh drug. The pharmacist said it was a narcotic. I'm freaking out. :brain:

I would love if anyone could give me some feedback. Either on the drugs,petit mal seizures in children, and also if we need and MRI. The doctor said that the way the spikes were on the EEG. He knows for sure she doesn't need an MRI . I just want to make sure I do the right thing for my girl. She has always been the sweetest thing ever!
 
Hello Maddiesmommy, I'm not going to be much help with your specific questions but just wanted to say welcome and I understand those feelings of being overwhelmed.

It's hard enough when an older child is diagnosed with epilepsy, never mind a little one. My daughter was diagnosed via EEG and an MRI was never mentioned. I guess if your doc says it isn't necessary, it probably isn't. Others may have a better idea.

It seems it can take a bit of trial and error to find the right meds. We are just in the very early stages of that with lamotrigine so I don't have much experience to share. The prospect of your child being put on AEDs is definitely terrifying, with all the possible side effects, but I suppose it is an idea you eventually get used to, especially when there is no alternative.

I suggest you do as much reading as you can on the internet - sticking to "sensible" sites, obviously. I know you're not in the Uk but the Epilepsy Actions site is very good nonetheless.

I also think what the pharmacist said to you was very unhelpful. You might find the Wiki page about the term "narcotic" quite interesting. Apologies if this is a bit garbled as I'm rushing out now but will be back later.

Hope you find the right med for your daughter soon x
 
Hi Maddiesmommy! My 11 yr old daughter has grand mal & petit mal seizures, but are under control with meds now. Good for you for noticing it! We have also noticed quite a switch in our normally extra sweet daughter. She was on Keppra & we're switching to Depakote now. I'm sure the meds are the culprit of this change in her, but I'm learning to deal with it quite a bit better now after a couple months. I'd like her to have as normal of a life as possible, and I feel seizure-free with a bit of a dark side & attitude is much better than the alternative. She was very grumpy & downright mean on days she was having seizures, so seizure control for her actually helps as well.
 
hi maddiesmommy

my daughter was mis diagnosed for years . Amy started about 5 /6 years old . I noticed the staring and wondering off . But when i took her to the doctors i was told she was a lonley child that it wasnt unusual . Six years later she had her first t/c . She did however have an MRI and an EEG which the MRI came back ok but the EEG showed spikes. she did start on lamotrigine then changed to lamactal , now she takes keppra (levetriam ) with the lamactal and a rescue med once a month .
 
Maddiesmommy

The drugs you are put on have side effects and most that I know of can cause mood swings and a change in temperment, that is the reason you are put on an anti epileptic drug and one to counter act the mood swings/depression, sorry to say this but you probably already know this, you will freek out about the smalest thing. You need to read up on epilepsy and cheek out the side effects of all the drugs you get, one thing though, any drug that works for you does not mean it will work for me, there are others here who are on one or all the tablets I take but with differant doseage levels, so what suits one may not suit the other person, keep a record of the changes in mood and temperment, you need to keep a record of everything.
 
Thank you

Thanks to those of you that replied to my message. I appreciate any knowledge or experience that can help my situation.
 
Hi Maddiesmommy
I was diagnosed at six years old.
I was put on phenobarbitol and Zarontin.
There is a meds side effects page here that you can browse.
some are specific, some are not.
Some just have nastier side effects than others.

Also, there is a section for diet, sleep and hydration. Also try music.
Don't worry about an MRI. I didn't have one until recently and it didn't show anything, while the original EEG's did.

Keep asking and browsing. While you may not find 'the' answer or cure, you will find friends.
 
this happen with my daughter,it was only me who ever saw it then a dr saw it and said it was anxiety which is most certainly was not,eventually she had right tests after many arguments to discover she having abouy 500 plus a day,it was awful...she ended up at school for kids with nerological problems had its own hospital it became part of great ormond street,she went onto lamatorine for about 5yrs and it got very much better
 
Thank you for the original post and all the feedback!! I feel like I am among my people here:) My daughter has had absence seizures for almost 2 years and I was the only one to notice. Luckily her pediatrician was very helpful and we got an EEG which showed that she has childhood epilepsy. I am currently dealing with a medication increase that has her acting aggressive and highly emotional. This happens every time we increase her dose and seems to last for a few weeks- I don't know how to help her. We talk about perception, alternative ways to respond to things, she gets plenty of sleep and a healthy diet and still she is acting out. It is good to see it may be fairly normal and if anyone has any suggestions for help they are welcome:)
 
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