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gregd2012

5 year old with first time seizure - strange symptoms 6 days later

I am new to these forums.  My 5 year old daughter had her first seizure (tonic clonic / grand mal) on Tuesday morning, 12/7 (6 days ago).  All of her tests including CT scan, MRI, EEG, blood and urine are negative and the neurologist says there is an 85% chance she will not have another seizure in the next 2 years.

What is particularly troubling right now is that she has been reporting strange symptoms for the past few days.  She says she feels "a little dizzy" and this has been going on for several days.  She has also said multiple times over the past few days that her "eyes hurt" while watching TV, and I don't believe she has ever said that before.  Today she said her teeth were tingling.  She has also been complaining of a tummy ache during the days before the seizure and every day since (she does get a lot of tummy aches, in general, so that is not new).  She also seemed to have a bit of trouble recalling memories (such as my phone number) for a few days after the seizure, but that seems to be better now.

I called the neurologist and he said he did not think there is any connection between the seizure and the dizziness at all.  In these forums, I do see a lot of people saying it can take a full week for someone to get back to normal after a seizure, so this seems to contradict what the nuerologist is saying.

Is it common to have strange symptoms for several days following a seizure that would still be going on 6 days later?  Are the symptoms related to the seizure?  Will these symptoms go away?  Are they permanent (is she going feel dizzy for the rest of her life)?  These strange symptoms the past few days has given us more worry than the seizure itself because we don't know what is going on.

She did get a large dose of chloral hydrate and Benadryl to sedate her for the EEG and MRI on Wednesday, 12/8, but that was 5 days ago.  Could she still be "hung over" from that? 5 days seems like a long time to still be feeling any effects from those drugs.

Thank you

Comments

Re: 5 year old with first time seizure - strange symptoms 6 days

If I were in your shoes I would think about doing a longer, sleep deprived EEG to be safe. Many people do have one seizure, but follow your instinct on this. I have read tummy aches can be connected to seizures/epilepsy. That seizure could be just a one time thing, but it never hurts to explore all that you can.

Re: 5 year old with first time seizure

First of all, I'm very sorry this happened to your little girl and to you. I remember that feeling well and still walk around with the anxiety, so know you're not alone. But also know that there are LOADS of super experienced moms and dads on these boards who can give you plenty of suggestions, support and ideas as you try to define what the heck happened to her.

I agree with "seize the moments" comments. You probably want to ask for a sleep deprivation EEG study. Are you seeing a pediatric neurologist? An epileptologist (a neurologist with specific emphasis on epilepsy)?

It concerns me that the neurologist would think there was no connection between dizziness and seizures. This is when you need to trust your mom instincts and get a second opinion. Keep strong. You know your child best.

My son threw up after tonic/clonic seizures, which is pretty common (think of a seizure as similar to concussion - normal to get sick). I wonder if that isn't related to the tummy aches as well? Just a thought.

Have you ever noticed your daughter's face twitching just a little bit (maybe for 4 or 5 seconds)? Not necessarily eyes rolling back but just a few seconds of 'thinking.' It can be very, very subtle and easy to miss. Often teachers will say it's ADD.

I ask because my son had this "symptom" for many months prior to the onset of his first tonic-clonic seizure. Turns out they were little absence seizures but we never knew it. Hundreds a day.

Some kids will tug at a button on their jacket. My son would twitch his mouth (like into a frown just a little bit) as though he was really focusing or thinking. If this is ringing a bell, you might check out info on Childhood Absence Epilepsy. My son's has been very controlled by meds, and he's been seizure free (taking meds, of course) for more than two years.

your neurologist should read these forums

Hey there Greg-

Sending my warmest thoughts to you and your  daughter. The few days after a tonic clonic can be extremely difficult. For me, it was very similar to my brain being rebooted where almost everything familiar became strange... I remember about a week after my first tonic clonic, someone asked me my name at a party I actually could not remember for about 8-10 seconds. It is an astounding experience.

below is my personal opinion and not medical or professional advice whatsoever:

I would find a new neurologist before you meet again. He/She has likely given you a statistic from a textbook about the 85% in next two years. And if you told this neuro these symptoms and the neuro not say it is seizure related--that is ridiculous to me. It sounds as though she has been having what are called "auras", or simple partial seizures. Teeth tingling (no one understands me when I say it is like the back of my teeth are dissolving), stomach sensations, memory issues, dizziness, and difficulty with flashing lights (tv),  every single one of these is likely seizure related. Like after shocks to an earthquake.  The first tonic clonic can be serious to recover from.

Not knowing is the root of all worry and anxiousness. Not knowing and needing to know is how fear can arise. Although it may seem near impossible to trust what is, it may be for the best.

I have have the most important moments and realizations of my life from the "after shocks" of a severe tonic clonic. Although it is easy to label these moments as "bad" right now, it may be that these moments prove themselves to be viewed differently in the future. Just something to think about to hopefully balance any overwhelming thoughts that arise from trying to know what can't be known.

much love to you and yours this holiday, please keep us up to date if you would like,

marty

Re: 5 year old with first time seizure

Sorry to hear about this. My son was dx with BRE at age 8 and had a total of 12 seizures. He has been seizure free for almost two years and off meds since Feb of 2010. He would get tummy aches a lot as well. Wondering if they checked for Arnold Chiari Malformation when they did the MRI? My son has that and is symptom free and no connection to that and the seizures but with the dizzy spells, etc I was just wondering.

Good Luck,

Curt

curtis.wybourn@us.qbe.com

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