10yo - new seizure type after no meds... what to do next?

[Chera25]

Hello, thank you, CathyAnn for referring me here! Background:

My daughter is 10 & she had her 1st tonic clonic 3 days before her 1st bday. Over 5min., ambulance took her to ER, bloodwork, CT, MRI were normal, EEG was abnormal. 21 days later she had her 2nd TC, again over 5min., ambulance took her to ER, bloodwork & EKG were normal. She was started on Phenobarbital at that time & given the diagnosis of Epilepsy. She had a few breakthrough seizures over the next year or so & was switched to Tegretol for fear of developmental delays from the Pheno. as she was already showing signs of developmental delays. She was on Tegretol for almost 7yrs & has been off seizure meds. for almost a year.

Over that time, she had 7 EEGs - #1 abnormal showing seizure activity in the left frontal lobe, (2-4 were "normal") #5 abnormal showing slowing, #6 abnormal showing 2 seizures in the left frontal lobe ('just staring' both on the EEG & on video). (#6 was her '2 years seizure free EEG!'...) Followed by a 7th EEG a few days later which was normal & the 6th was 'written off as a fluke' & she was weaned off her med. & declared 'seizure free'. & We'd seen nothing since.

After the initial 2 TCs, she only had complex partials - for her they consisted of eye rolling, fluttering, chewing occasionally... So, other than the 2 'fluke' EEG seizures, nothing in nearly 3 years that 'we've' seen. (Oh & she also has Aspergers & a very high pain tolerance/oblivious to a lot of sensory things...)

In Dec. ('12), she fell in front of me & then told me in tears that she's been having blackouts where she falls. After lots of digging (that night & ever since ), there had been 10-12 before that one that she didn't tell us because she 'was worried that we'd be ashamed of her for not being seizure free'... The earliest we can track would be 11-30-12 then the one I saw was 12-27-12 & there have been 4 more since that I or my husband have seen and she has told us about. The last one being 1-13-13. She says that her vision goes black (she describes 'tunnel vision' that goes to black) & she falls down (or over or backwards if she's sitting), but then gets up & is fine. Nothing afterwards to speak of, no sweating, no paleness, no sleepiness (but she's literally never tired... stayed up for 31hrs. for her 30min. EEG last week & even nearly the entire time the last few days)...

She had an EEG (30min.) on the 16th followed by a Neuro. apt. where he told us that EEG was clear. & Then she/we just got home today from a 48hr. EEG that we're pretty sure was clear as well. Her Neuro. said he'd probably get back with us next week after he goes through the video & EEG to make sure. But between her & I, there was nothing that we saw.

He's referring her to a Cardiologist to make sure her 'blackouts' aren't 'fainting' but with how quick they are (a few seconds) we don't think it's heart-related, but since he hasn't been able to catch them during the 2 EEGs, he wants to make sure.

Any advice or thoughts on what would be next? Since being off Tegretol, she's currently on Zoloft (since last summer) for OCD/anxiety/behaviour - which ironically was helped by the Tegretol when she was on that.

Thank you for whatever you have to offer!

Chera

 

[donnajane]

Welcome. How scary for your daughter. I have a 2yr old on Tegretol Dr's still trying to work out what is going on with him.He was frist taken to the ED with a run of smaller seizures ofr 30minutes when he was just over 7 months old. The Tegretol has been amazing for him and its like it's opened a door which was closed in his brain before and he is now able to interact and his development has caught up. Although his Paed says she wonders if another Medication might be better for him I wil admit I am terrified of taking him off the Tegretol as I know how far he has come on it. I know the reality is some of it may not be the Tegretol it may be him "growing out" of some of his event's but I still have this vision of the child I use to have in my head and it was so sad to see him like that when I now know his potential.
I was very interested to read re her EEG's my little man has had 5 so far. 4 clear although the tech doing the EEG called another person into watch him while the lights flashed dueing 2 of those as his eye's rolled up but nothing was showing on his EEG. On his 5th EEG he had the same eye reaction to the light but this time they also found a slowing on the back right of his brain. He didn't start crawling until almost one and even then it was not crawling he was dragging himslef along the floor using his right side only. Fine now and up and walking.
To be safe Nureo ordered an MRI at 18months and found a lesion on his putamen, apparently it's to deep in the brain for an EEG to pick up. Just had a follow up MRI last Friday and waiting results as his Nureologist is away so we don't see him until 25th Feb. I know from last time he won't contact us with the MRI results unless there is something which needs to be done straight away. We found out re his first MRI 4 weeks after it was done that he had a brain lesion but as Nureo said no need to worry us until he spoke to us in person as there is nothing that needed or could be done at this stage.
I will be interested to see what the cardiologist says re her black outs as with my little man he has so many strange things happen that no one is really sure what is going on and then why he is often a normal toddler then suddenly like he has regressed. He sometimes gets blue lips when I lie him down to change his nappy or super white hands which his Paed said may be a circulation issue but as of yet he hasn't had any heart tests other than lots of different Dr's using a stethoscope to listen to his heart and also an Xray.
Good luck with it all and welcome.
Donna

 

[CathyAnn31]

Hi Chera, good to see you. You'll find a bunch of friendly, knowledgeable folks here.

So scary for that sweet lil girl of yours. **hugs**

 

[Nakamova]

Hi Chera -- welcome to CWE! Any friend of CathyAnn's is a friend of ours!

I think it's relevant that the drop attacks started after your daughter was weaned off the Tegretol. In addition, Zoloft can be a seizure trigger for those who already have a low seizure threshold, so the combination of being off the Tegretol and on the Zoloft could be putting her at risk. You should ask the neuro about the possibility of trying Tegretol again -- perhaps at a low dose -- to see if it helps. In addition, ask if there's something other than the Zoloft to help with her OCD/anxiety.

Best,
Nakamova

 

[KarenB]

Hi Chera,
It sounds like your daughter is having drop seizures.

Her history sounds a bit like our son's (9 y.o.) who had his first tonic/clonic just several days after his 1st birthday. He has had 2 long periods of being seizure free (the last one he was on the Ketogenic diet, but was weaned off meds), but just when we start getting our hopes up that he's outgrown the seizures they come back (and the last time they came back with dreadful vengeance).

And yes, the seizure types have changed. He started out with classic tonic/clonics at age 1 that lasted about 3 minutes, and then when he was around 6 years old, he started having a sort of tonic seizure, where he'd scream out loudly several times, and then go really stiff for about 10 seconds. He seemed to be having drop seizures for a 3 month period (when he was on Trileptal) -- this happened a lot at school when walking across the campus, but went away when he was taken off Trileptal, and most recently (after being seizure free for a year) he started having gelastic seizures (his teacher reported that he'd had been giggling all day long, when nothing was especially funny). We didn't realize this was a type of seizure until someone here told us, and hadn't even mentioned it to his neurologist.

Anyway, I said all that to say that yes, during this past 9 years, MOST of Jon's EEG's have been normal. He even had a 48 hour video EEG that came out normal (and during that time he was having several tonics each week but he didn't have any when hooked up). In fact, he's probably had at least 10 EEGs during his lifetime, but only 2 have been abnormal -- the first abnormal EEG we got was in 2011 (after having epilepsy for 6 years) and that was when he was in ICU having a tonic clonic seizure every 2 hours. His next EEG was last March 2012, and that one was normal (but then he had his first seizure in a year about 2 days later). He had another overnight EEG several months ago when things got really bad, and this one was abnormal after he fell asleep, even though he didn't have any seizures that night.

So, long story short -- a clear EEG doesn't mean that there is no epilepsy. The vast majority of Jon's EEG's were clear; he usually only registers abnormal brain waves when he's actually having a seizure.

It sounds like your daughter may need to go back on meds (or perhaps give the Ketogenic diet a whirl).

 

[CathyAnn31]

How's she doing, Chera?

 

[momto2]

Just wanted to give you hugs. reading that your daughter thought you would be ashamed of her has me in tears. Thank you for mentioning it as it's something I need to be aware of with my 14 month old in the future.
We're newly on this journey so I don't have any advice to add but wanted to welcome you.

 

[Chera25]

Good luck with it all and welcome.Donna

Thank you!

Hi Chera -- welcome to CWE! Any friend of CathyAnn's is a friend of ours!

I think it's relevant that the drop attacks started after your daughter was weaned off the Tegretol. In addition, Zoloft can be a seizure trigger for those who already have a low seizure threshold, so the combination of being off the Tegretol and on the Zoloft could be putting her at risk. You should ask the neuro about the possibility of trying Tegretol again -- perhaps at a low dose -- to see if it helps. In addition, ask if there's something other than the Zoloft to help with her OCD/anxiety.

Best,
Nakamova

Actually we did try Tegretol again, though because it was for behaviour & not seizures, they rx'd the generic. Saw no improvements & tried Topomax (since one of her issues at the time was migraines), no improvements, so went to Zoloft, things have gotten much better. She's still very OCD & impulsive, but her self-injury stuff stopped & the migraines stopped, her anxiety is less though not gone, but the self-injury stuff was our #1 thing... She's been on the Zoloft since July (I think) & these 'blackout events' have only been going on since Nov. 30th - so she went 4+ months with no issues... ?

Honestly, unless she'd need to go back on Tegretol for seizures, I don't want to attempt another med. I really hate the self-injury stuff & am happy to see them gone, especially as she gets closer & closer to puberty... (which IMO, could be what's 'causing' these recent events...)

So, long story short -- a clear EEG doesn't mean that there is no epilepsy. The vast majority of Jon's EEG's were clear; he usually only registers abnormal brain waves when he's actually having a seizure.

Oh I TOTALLY agree & understand. & Feel SO lucky that her current Neurologist & everyone involved right now completely understand that too. Back when she was a toddler & going through SO MUCH, her Neuro. at that time (who was baddd in many ways & eventually fired - not because of us ANYWAY...) & her Ped. were very judgy & accusing about 'normal EEGs', it was very frustrating. I LOVE our current Neuro. though. <3

Just wanted to give you hugs. reading that your daughter thought you would be ashamed of her has me in tears. Thank you for mentioning it as it's something I need to be aware of with my 14 month old in the future.
We're newly on this journey so I don't have any advice to add but wanted to welcome you.

It broke my heart when she said it... obviously we would NEVER EVER be "ashamed" of her! She said she knew we were happy that she was seizure free & didn't want us to know it wasn't true.

How's she doing, Chera?

After having 16 of these between Nov. 30th & Jan. 13th... Jan. 13th was the last one 'at this point'... sigh. She went to the Cardiologist last week & is wearing an 'event/heart monitor' for the next 30 days. It was the least invasive way to see if it's heart related. Though the Cardiologist agrees with her Neuro. & us that it's ilkely seizures based on her history & at the apt., her heart check-up was fine. But with no events, there's nothing to prove or disprove.

My current theory is hormones. We've ALWAYS known that even if she outgrew her seizures as a child, that puberty could 'bring them back'. At the Cardiologist, we learned she had gained 5lb. & 2.5in. since her last dr. apt. (aside from the EEGs ) - that is a HUGE increase for her as she's tinyyy. I'm thinking she had a growth spurt recently (& possibly maybe a hormone surge? ) and maybe that spiked a group of seizures. I'm only thinking this makes sense, she doesn't go back to the Neuro. until March (unless needed). But with no other events recently, I think it's at least a possibility. sigh...

Luckily, she doesn't mind the heart monitor - except they are clearly not intended for kids as active as her. lol The 2 leads she has to wear are only 'supposed to' be changed for baths, which the tech said could be every 2 days... she barely gets through 1/2 a day before they are falling off. But my 10yo. girl is more like a 6/7yo boy. LOL She's a swimmer, so she's taking a month off that & we haven't quite figured out how to attach it to her leotard for gymnastics yet, but we'll try again this Thurs. lol

Anyway, thank you everyone! Sorry it took so long to reply!!!

 

[KarenB]

I think your theory about early puberty and hormones could very well be what's going on here. So glad to hear that that last 2 weeks have been good with regard to the episodes.

 

[Nakamova]

Yes, high estrogen levels can be seizure triggers. Are her neurologists familiar with catamenial epilepsy?