Update on DD's EEG results (Long)

dawnc78

We went for DD's EEG and left for vacation the next day...so now that we are home and I have access to the internet again...here it is...

Before her EEG, we kept DD up until 2am and woke her at 6:30am. She had napped really well the day before (4hrs), and still had a really hard time staying awake so late. So did I to be honest J.

The test was fine for her (torture for me and DH)...she couldn't fall asleep but they were able to induce a couple of seizures via hyperventilation (they had her blow on a pinwheel like a mad woman).  I didn?t notice any during the strobe light exercise but that doesn?t mean they didn?t happen?I haven?t gotten the full report yet.

The immediate word (within hrs we heard back) was that Yes, DD does have Absence Seizures. She started medication on Friday night and will gradually increase it until we find a dose that works for her...so far she is still having them and I have not found any particular triggers... being at the beach was stressful, she was having them in the water so you have to watch her even closer?we both have to be in the water when both kids are because one of us has to be on top of her and the other chasing DS(like any 3yo is all over the place).

We have noticed that she does not cease all activity when she has a seizure?if she is walking may or may not continue walking absent-mindedly in whatever direction she is already heading?when she?s running and playing she tends to stop running and walk instead? if she has something in her mouth, she?ll continue to chew (not sure if that?s a good thing or a bad thing). It sank in on vacation that everyday things like going down stairs or the monkey bars or fire pole (which is her favorite) are suddenly not safe for her to do independently anymore...she was just getting to the point where she could do so much on her own...

She is taking Zorontin (Ethosuxamide) she was on 0.9ml 2x/day for 1week and now  1.8ml 2x/day thereafter. The Neurologist wants to see her in one month (Sept. 1). I have read the drug reports and the pharmacy info, it?s scary to think about some of the side affects (Lupus?...suicidal thoughts/attempts). I can?t wait to sit down with the doctors and talk about everything!

 Thanks for reading if you got this far...and for listening about this if you've been following along for the last two weeks.

 

Temp108743750006959

I hope the medication is helping and I hope the doctors can you some good information. Can she grow out of these seizures?

wifeandmama

I just popped on this board by chance and read your story... my son had febrile seizures last summer but had a real seizure yesterday and we're starting this process of testing now.  He had a CT scan and lots of b/w yesterday - all normal.  We have to f/u with an EEG and MRI now.  So nerve wracking and scary... and not to mention, horrifying to see your child have a seizure.

Best of luck to you and I hope you can get everythign figured out soon.  My mom has had epilepsy for many, many years and has lived a very normal, full life! 

dawnc78

Thanks,

We are hoping the seizures start to decrease and eventually go away...

Wifeandmama: Hugs! I know how hard it is to watch...while DD doesn't have seizures that involve convulsions or passing out or anything like that...just knowing that her brain is not doing its job properly is enough to break my heart! I hope that you get some answers for your DS and that it is something he can/will outgrow. We did not do CT or blood work, we went straight for the Sleep Deprived EEG...It is good that the tests you have had done already are normal Another poster (PMQ I think) has a DS with a seizure disorder who presented normal on all of his EEG and MRIs...I have read that there is such a thing as Non-Epileptic Seizure Disorder (NESD) that has normal test results... Good Luck!!! and keep us posted!

lazysusan

fellow mom of a DC with seizures.  Hugs to you both.  My oldest has had normal EEG's and MRI's.  Keppra has kept him sezure free for over a year.