Starting Daily Meds Now :(

[chmmr]

I had posted about our "freaky friday" last week where my daughter who normally only has a complex partial at most once a month, and often even farther apart than that, had 8 seizures on friday.

We had her checked out that day at our local hospital because the neuro we deal with is 5 hours away and her nurse wasn't there, and our pediatrician was away. So long story short the pediatrician on call examined her and said there was no sign of illness triggering it so they wanted us to put her on meds until my ped got back this thursday.

Today i heard back from one of the neuro nurses, and told them what happened, and she called back and said it's a done deal, my daughter will now be on meds until she has at least one year seizure free. :dontknow:

I tried to ask some more questions since this behaviour is so out of character for her (could that day have just been a one off, or does it mean we are going down an ugly path and we need to stop it etc) but basically got brushed off. They didn't suggest doing an EEG or anything, just said to follow up with our pediatrician this week and they could consult if she gets worse again and needs it.

I hate the idea of her being on meds (clobazam right now) again long term (she took clobazam for 8 months as an infant but claimed she wasn't seizing and took her off when she was 13 months old after a week long EEG). I get that it may be necessary but why do the neuros (and their nurses) think it is ok to just brush us off and say this is the way it is. I'm hoping my pediatrician will have more of a discussion with us and explain why its absolutely necessary etc and hoping she will get us an EEG so we can see if its making an improvement and justify it in our own heads.

 

[notime]

First, I am extremely sorry that your daughter had 8 more seizures in one day that isn't really normal and I think this needs to be checked out by a person with better experience. A neurologist that's 5hrs away? That sucks, you should find another neurologist that is closer. I thought being an hour away from one was bad.

This may sound difficult, but you should ask your neurologist for a referral to a better neurologist who has had additional training like my doctor. Are there any epileptologists in your area? This isn't really normal, and usually a neurologist with additional training in epilepsy or an epileptologist would be better qualified to treat your daughter. I am not trying to put down your neurologist or anything, but an epileptologist would have better experience dealing with these type of problems. There may also be some that specializes in children's epilepsy, but those may be only be at John Hopkins and other advanced medical schools, but perhaps there is one in your state / country.

I know you hate her being on medicine, and I hate being on medicine, but my neurologist assumes that my condition is for life since it's genetic and is tonic clonic seizures. I am on Keppra XR, and I had a seizure when it was at full dose so now I have to try another medicine called Lamictal which I am slowly upping. Good luck with your child though, and hope she gets better. Perhaps she will be lucky enough to get off, but you would be better off asking a specialist like an epileptologist about taking her off or about when she can come off.

 

[N Sperlo]

Hey chmmr,

Its tough having epilepsy and I think even harder for the family. My doctor makes his suggestions, asks for my input, and that is the way we go. We work this way because we know we cant pin point anything, and we know the medicine has an effect. It has to be extremely hard being 5 hours away. I have mentioned that I have always had some of the best neurologists.

An EEG can be extremely hard to do with someone who only has a seizure every month or so. Many seizures cannot be triggered. Mine can't, but I was having so many that I had some that were detected. If the behavior of multiple seizures continued, an EEG would probably be likely. If the medicine prevents any seizures for the next few months, it may just be the path to go.

Be sure to bring up any side effects to the doctor so they can be dealt with. Chmmr, I live a completely normal life as long as I stay on my medications, and if your daughter is controlled b the medicine, I would bet she can live just as normal of a life as I do. I was having multiple a day. I drive and work 3 jobs.

Best of luck and I hope everything works for the best.

 

[chmmr]

First, I am extremely sorry that your daughter had 8 more seizures in one day that isn't really normal and I think this needs to be checked out by a person with better experience. A neurologist that's 5hrs away? That sucks, you should find another neurologist that is closer. I thought being an hour away from one was bad.

This may sound difficult, but you should ask your neurologist for a referral to a better neurologist who has had additional training like my doctor. Are there any epileptologists in your area? This isn't really normal, and usually a neurologist with additional training in epilepsy or an epileptologist would be better qualified to treat your daughter. I am not trying to put down your neurologist or anything, but an epileptologist would have better experience dealing with these type of problems. There may also be some that specializes in children's epilepsy, but those may be only be at John Hopkins and other advanced medical schools, but perhaps there is one in your state / country.

I know you hate her being on medicine, and I hate being on medicine, but my neurologist assumes that my condition is for life since it's genetic and is tonic clonic seizures. I am on Keppra XR, and I had a seizure when it was at full dose so now I have to try another medicine called Lamictal which I am slowly upping. Good luck with your child though, and hope she gets better. Perhaps she will be lucky enough to get off, but you would be better off asking a specialist like an epileptologist about taking her off or about when she can come off.

Thanks notime. There is no one closer. There are neurologists here (they read the EEG's done at our local hospital) but the ones we normally deal with is at Children's hospital and they are really the only pediatric specialists in our province (we are In Canada). The neuro we do have (that is 5 hours away) is indeed an epileptologist and a pediatric neurologist so i'm sure she is doing what she needs to. Just stinks, especially when she is only 3 years old.

Hey chmmr,

Its tough having epilepsy and I think even harder for the family. My doctor makes his suggestions, asks for my input, and that is the way we go. We work this way because we know we cant pin point anything, and we know the medicine has an effect. It has to be extremely hard being 5 hours away. I have mentioned that I have always had some of the best neurologists.

An EEG can be extremely hard to do with someone who only has a seizure every month or so. Many seizures cannot be triggered. Mine can't, but I was having so many that I had some that were detected. If the behavior of multiple seizures continued, an EEG would probably be likely. If the medicine prevents any seizures for the next few months, it may just be the path to go.

Be sure to bring up any side effects to the doctor so they can be dealt with. Chmmr, I live a completely normal life as long as I stay on my medications, and if your daughter is controlled b the medicine, I would bet she can live just as normal of a life as I do. I was having multiple a day. I drive and work 3 jobs.

Best of luck and I hope everything works for the best.

I think the hardest thing is with her having complex partials, they are easy to miss if you aren't watching her all the time right? If i let her play in her room i have no way of knowing if she had one or not because she snaps out of it relatively quickl
I know EEG's can make it hard to catch things, i guess we are fortunate (if you can say that about an EEG) in that her EEG's have always been abnormal (sharp waves/epileptiform discharges around T6-right temporal lobe), but they have never actually caught a seizure on it either. I will definitely keep an eye out for side effects. Thanks!!

 

[donnajane]

Sorry to hear re your daughter multiple seizures and being put back onto meds.
My son is 32 months old and his specialists are still "working" out what is going on with him. first ED visit was at 7 1/2 months but we have since realised he was probably having events earlier.
Meds are not great but if they help then I would much prefer my son on them than having seizures. I know it is hard when they are so young and not able to tell you exactly what was going on.
Re the multiple seizures in one day it can be scary at one point our little boy was having up to 150 x 1 to 2 sec events per day his nureologist at the time said just "Shudder Syndrome" he will grow out of it! Thankfully they did get a lot less but in the mean time we changed to a private Nureologist who kept looking, his 5th EEG showed slowing on the back of his brain and his eye's rolled with the flashing lights during the test but the EEG didn't alter, then he had an MRI which showed he has a brain lesion on his putamen which is why his EEG's were coming up OK as his issues were to deep in his brain to be picked up by the EEG. Mind you I think when we see his Nureo in Nov I will ask for another EEG, especially seeing his last almost 18 months ago showed the slowing in one part of his brain. He has had a 2nd MRI at the start of the year and has to have another at the start of next year.
Our sons specialists are great and when they suggest medication changes they let us know why and we feel comfortable enough with them to ask questions re why. At the moment his Nureo is not sure if the Tegretol he is on is doing a lot of good but I will admit I am terrified of what he will be like if they take him off it as the Tegretol opened a door in his brain which seemed closed before and has in general helped control most of his seizures. But I think the Nureo, like us, is wondering if the Tegretol still working, he still has regular smaller events and strange periods where it appears as if part of his brain is not working for a period - speech, sensory, motor skills etc. But not the multiple seizures but maybe has he "outgrown" either the medication or the seizures. Sadly the only way to know will be to wean him off the Tegretol.

I hope your little girl is doing well and her seizures are controlled.
Take Care.
Donna

 

[N Sperlo]

I think the hardest thing is with her having complex partials, they are easy to miss if you aren't watching her all the time right? If i let her play in her room i have no way of knowing if she had one or not because she snaps out of it relatively quick

This is where it gets hard to be a parent, I think. My mother was always paranoid and thinking I was having seizures all the time. It made it very stressful for me when she would be yelling, trying to get my attention, then ask if I had one. Usually I wouldn't notice. I could have been having 50 or so a day. Quick in and out. I never experienced any pain or anything. Usually no knowledge that were happening.

I am certainly not telling you how to be a parent but as someone who was in a similar situation. Don't worry yourself or stress out too much. It is a problem you are working on and your daughter will be OK. I know that she sees your stress and that may be the hardest part for her.

Are you worried about something when you can't see her having a seizure?

 

[chmmr]

Actually she doesn't see my stress. She's 3 and i am very conscious of that kind of thing because of the 3 other kids i have besides her whose emotional well being i have to worry about as well.

I'm not obsessing over it, nor am i paranoid, and i don't call for her all the time as your mom did. My point was that i can't sit on top of her 24/7 (particularly when i have 4 kids) and know when she is having them if i am to keep a normal life for the rest of the family and that makes it difficult for tracking purposes. Who knows if she was having more episodes to "warn us" before she had this big cluster. The only way i am alerted to anything (and the only time i ask) is when she gets that glazed over look with her tongue sticking out.

The only thing i am worried about if i can't see her during a seizure is her safety, and if she is having breakthrough seizures while on meds obviously i need to know that too.

 

[N Sperlo]

The only thing i am worried about if i can't see her during a seizure is her safety, and if she is having breakthrough seizures while on meds obviously i need to know that too.

Sure. I understand. Of course, safety is a worry for everyone with epilepsy. You do need to know when she is having seizures, but you can't catch them every time. With some seizures, they won't even show up on an EEG. I would be stressed as hell if my (theoretical) three year old was having seizures.

Best of luck.

 

[jimj]

I haven't read this whole thread (I just skimmed a couple posts), but I did notice you're starting out with clobazam. I'm sure your epileptologist knows more about AEDs and epilepsy than I do, but for my daughter benzodiazepines would not be the first type of AED I'd try (they wouldn't be the last either, but certainly closer to the bottom than the top of my list). They have their place, but there are so many other AEDs you could try that you may want to ask your neuro why she chose a benzo first. If I remember right about a third of people develop a dependence to benzos which means they'll eventually get to go through "benzo withdrawal syndrome" which does not sound fun (it can last for months or even years in severe cases). If clobazam doesn't control her seizures I would be very cautious about increasing the dose (people who become dependent on benzos need to keep increasing their dose for it to be effective, but obviously you can't increase forever).

 

[chmmr]

I haven't read this whole thread (I just skimmed a couple posts), but I did notice you're starting out with clobazam. I'm sure your epileptologist knows more about AEDs and epilepsy than I do, but for my daughter benzodiazepines would not be the first type of AED I'd try (they wouldn't be the last either, but certainly closer to the bottom than the top of my list). They have their place, but there are so many other AEDs you could try that you may want to ask your neuro why she chose a benzo first. If I remember right about a third of people develop a dependence to benzos which means they'll eventually get to go through "benzo withdrawal syndrome" which does not sound fun (it can last for months or even years in severe cases). If clobazam doesn't control her seizures I would be very cautious about increasing the dose (people who become dependent on benzos need to keep increasing their dose for it to be effective, but obviously you can't increase forever).

Thanks jimJ. I did actually discuss exactly that with my pediatrician last friday (she is in close contact with our neuro and regularly deals with this kind of thing.) Anyways i explained to her my concern about leaving her on the clobazam as a long term thing and she was in complete agreement. She said it works very well short term but if we need to do long term she is happy to switch to something else like Lamictal (lamotrigine).

We were originally going to start tapering the the clobazam tomorrow in anticipation of her EEG (and because we wanted her off the meds in the hopes that "freaky friday" was a one off occurence). Unfortunately i saw an episode last tuesday, and then again yesterday, that seemed to be quite obvious seizures (although very short for complex partials-only 10-15 seconds tops), and our pediatrician had told us that if we saw anything, even if it was just us saying "did we just see that?", then we shouldn't decrease it. I've decided we will wait until after the EEG now and see what it shows and then make a plan to get off the clobazam and onto something else if that is what is necessary. Thanks!!