Mom of an Epileptic 7 year old

[Kerum]

Our son had his first seizure in August 2010 at our friends house down the street. We were not even there and got a call asking if he'd ever had one before and my husband hung up the phone and FLEW out of the house. He got there as our son was coming out of it and just saw the confusion after it all. ER visit was a joke...we will never go to this particular military ER again.

Referral and appt with a Ped Neuro was made. EEG was ordered before we had our initial consult with that neuro (he ordered it, guess it's standard for his office). It was to be a "sleep deprived" EEG. We had to keep our son up until midnight, then wake him up at 5am and keep him up until his test. My husband stayed up with him and they were planning on sleeping on the fold out couch after watching some movies, etc. At midnight, lights went off and about 5-10 minutes later, our son was seizing. Husband woke me up (I was taking the 5am shift) and I walked in to see the scariest sight a parent could see. Tried video taping it for our appt, but the battery was dead. :-( When he stopped seizing, we thought it was over. We were wrong. His whole body had gone stiff and it looked like he stopped breathing. 911 was called and she told us to open his mouth to see if he had choked on something...we couldn't even get his mouth open. My husband had to run downstairs to get the ambulance to come to our house (they went to the wrong house) and as they came through the door, he was finally release from his seizure. 15 or more minutes had passed since it all started. ER visit was better as we went to a different hospital with a Pediatric ER. CT scan came back normal. They sent us home after consulting with the neuro we hadn't even seen yet.

EEG came back positive, Son went on Trileptal. MRI was ordered and the results were that he had white spots on the left side of his brain. Things were fairly controlled over that year; we had two break through seizures last June, 2 days apart. Trileptal was increased and we didn't think we'd seen any until last month when he stumbled down the stairs and could barely stand. Said he was scared but couldn't tell us why. I turned the light on and the right side of his face was drooping like he'd had a stroke. I knew immediately that another seizure happened. Guess it's called Todd's Paralysis? He got better pretty quickly as his hand strength got better and better in just a few minutes. Sent him back to bed and constantly checked on him. Called neuro the next day (Friday) and was called back with an appt for another EEG that following Monday. Asked about a med increase and was told that the Dr. didn't watn anything changed.

Got a call a week ago from his teacher. Something was wrong. There was a lot of confusion and from what his teacher told me, it sounded like a simple partial seizure. Got him home from school (didn't know if he'd go into a complex partial if he stayed) and called neuro. The next afternoon, they FINALLY called me and increased his meds.

We are worried. We had been told that the chances of him having a seizure during the day were low. Now we are told that the type of seizure he had is normal. We are worried about the white spots and what those might be, if they increased, if something else has happened. Now we have to wait until May 30th for the results of this latest EEG.

Any words of advice? Any people out there with something similar? His EEGs during the test look awful. From looking at EEGs online, they look like he's having seizure activity all the time, but that can't be right, right? My husband said he hoped that it was just that the lines on the screen are closer together than the lines on the results we've seen online. Any words of wisdom about that?

Thanks in advance. Know it was long....thanks for anyone hanging in there to read! ;-)

 

[Nakamova]

Hi Kerum -- Welcome to cWE!

I'm am sorry you are going through all this, it must be very scary. I wish I could give you some answers, but epilepsy has a lot of unknowns, and it's hard to predict the course it will take in any given individual.

You should definitely talk to your son's neurologist to get questions answered about the white spots (lesions perhaps?), as well as the EEG results. Spikes are very common on EEGs, and don't always indicate seizure activity. There are all sorts of factors that factor into EEG interpretation, including when during the sleep/wake cycle the spikes appear, how sharp they are, how close together, and whether they occur in relation to waves or other patterns. So the neurologist needs to be the one to tell you what the read-outs show.

BTW, if you aren't happy with the neurologist, don't be shy about finding another. Epilepsy is too stressful to have a difficult neuro make things worse... You are probably well-acquainted with epilepsy now, but there is some great general info here that might still be of use: http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/

Best,
Nakamova

 

[Kerum]

Thanks Nakamova, we have looked into getting a second opinion if our followup appt later this month doesn't go as well as we'd like. However, we are military and the only in-network provider near us is the one we see right now. NO ONE in Raleigh is in-network. I have an appt with his regular pediatrician to discuss what I can do to in this situation. I am hoping that someone at the military hospital will take a look and order more tests just to see if anything has changed.

I don't know what to think of his current neuro. I am thinking that my son is the least of their worries as he "seems" well controlled and they see so many who can't say that or have other neurological issues that seem more pressing. However, as I was looking through posts on here tonight, he had another seizure and I caught it on the video monitor. Went up there and he would have rolled right over to go back to sleep if I hadn't been there when he came out of it. My gut feeling is telling me that this has been going on and we just didn't know it. I know that single episodes shouldn't do any damage, but worry more about multiple ones through the night or even just regular ones that are causing him to not sleep as well and making learning harder at school because of lack of good sleep. I know the statistics are that those with seizure disorders have more trouble in school. That worries me as he also has ADD and things are already hard for him (his neuro sees him for both disorders...he diagnosed him with the ADD with the help of the Quotient Testing System).

I just hate all the unknowns. And I hate the waiting game. I think I would be able to handle it better if it were myself. But, it's my child and that's probably the worst thing is when it's something going on with them and you can't do anything about it. We feel blessed that it's "only" this and not cancer, a deadly heart disease, or something else horrible.

 

[CathyAnn31]

I don't have any advice, but I do want to give you a big ol hug. I can't imagine how scary it is for you, seeing him like that. ***hugs***

 

[BensalemAngler]

I wish I could say something that would make everything good again, but I can't. My son has dealt with SZ since the age of 2. For the first 6 months my life was, for lack of a better word, insane. I was scared to go or do anything outside of my house with fear of him having one. We have had the eeg's, 24 eeg, mri, and all that was seen was a half second spike by one dr. and 4 others did not see what the one saw.

I am a control freak. I like and need order and know what and why about everything. SZ's sometimes have no rhythm or reason (for my son) they just happen. We kept a journal for about a year trying to tie something to what was happening, we found nothing.

All I can say if you are not happy at the dr. you are with you must change. We liked our first dr. then he left. The dr. they gave us next was a nightmare. We despised him. He was a medicine freak, all the time uping and wanting to try new meds. We have left him and are at CHOP in philly and it was the best move. They got his med right, we feel at ease with them, and they listen to us. The other guy did not.

There could be light at the end of the tunnel. After 6 months an trying all types of meds my son went on Depakote and his SZ has stopped (NO JINX). After 2 and a half years you tried to ween him off and when his med was done he had another one. Back on the meds we went to the point now 2 years later we will try to ween again.

It's scary I know, I wish I could help more...