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Worried parents looking for some advice

Mon, 10/09/2017 - 22:05
Hi, we have a toddler (4 yrs old) who has recently started having seizures. He was a perfectly healthy boy up until this point. We’re new to this site. We were hoping to see if there are similar cases out there and what treatments work for you or your love one. About 3 months ago, he started complaining his left leg shakes. One day in daycare, he lost strength in the left leg and fell over. Ever since he’s been getting seizures few times a day lasting less than 30 seconds. During the seizure, he’s conscious and understands what’s we’re saying to him. Originally the seizure was around his left leg shakes and then his whole body tenses up. Now it’s more like his entire body cramps up and he can’t breathe. Usually he kind of know when the seizure about to come but lately they come without warning where he just drops wherever he is or doing. It usually takes him few minutes to recover full strength like standing up or acting normal. Once the shake is over, he acts very normal. You can’t even tell he just had a seizure. We have taken to him to ER. He has gone through 2 EEGs and 2 MRI and all 4 times results show no abnormality. We took him to ER because his leg started to limp. Hence the reason they took another EEG and MRI. He has been on Kappra which didn’t work. It decreased the intensity (30 sec to 10 sec) but increased the frequency from ~5x to 9x a day. And that was after few times of increasing Kappra. After few weeks, doctor switched the med to Depakote. During the med. change, about 1 week to 10 days all his seizures have creased. We’ve noticed as we were decreasing Kappra, the seizure came back more intense and more frequent now. We have increased Depakote 2x now and he’s still getting seizures (~7-9x/day). Before the 2nd increase of Depakote, his seizure was the worse we have seen. It was so intense, his head started to twitch along with his body shaking and it lasted more than a min and couple of times more than 2 mins. We have asked Dr. to try a new med but he’s recommending my son does an overnight EEG. This is where we are now. We are waiting to bring him into CHOP. If anyone knows or has someone who is going through something similar, please let us know what treatments work for your child. We are so worry and concern. Any help or advice is greatly appreciated.

Comments

CHOP is a very well regarded

Submitted by Amy Jo on Tue, 2017-10-10 - 01:34
CHOP is a very well regarded hospital but they see a lot of patients. An overnight EEG is a good idea. If they have better information, then they can move to a better treatment approach. A longer EEG may provide that. The upside to having more seizures is it is easier to get data - yeah seizures are scary but few seizures are actual emergencies so it's ok to breathe. I don't expect you'll get information during the EEG, do you have that EEG and a follow up appt scheduled? Our epileptologist (different hospital) was the attending the time our child had a five day EEG so we got updates most days because he was there and it was convenient for him. It totally changed the treatment approach, changed what drugs we ramped back up on as it really was different information. A number of issues show up best during longer sleep or around waking from a full night's sleep. Know if they will keep him awake, bring a lot of activities because EEGs are pretty boring.Do you know when a seizure is considered an emergency? Do you know what to do? Do you currently see an epileptologist? Depending on the outcome, you might consider switching to one if your son's epilepsy continues to be uncontrolled or is an unusual syndrome.

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