Overwhelmed Dad...

[bkrell76]

Hi,
This is my first post. I don't know how I've not noticed this forum in the 5 and a half years since my son suffered his first seizure but I haven't. But I've been researching the net anew today because we just found out one of his older sisters also has a seizure disorder that is probably completely unrelated. I'm just kind of in shock.

Backstory-
My little boy, who's now 7, had his first seizure on a summer morning less than 2 months after his second birthday. It was a complex partial that generalized briefly just before he went post-ictal. After a few more traumatic seizures, we were finally able to see a pediatric neuro we started him on phenobarb and keppra. My wife, a pediatrician, was disturbed by this combo and we ended up at office of one of the top pediatric epileptologists in the country. He diagnosed him with panayiotopoulos syndrome and started him on Trileptal. After two seizure free years, the doctor wanted to wean him off the Trileptal, convinced he'd outgrown his seizures. Only, he began to have them again.

Fed up, my wife sought out another neuro. He changed my son over to Depakote and he's been seizure free ever since. He wasn't convinced about the diagnosis, though. At the same time, he didn't really offer an alternative one. My wife had been unhappy with the Depakote, concerned about the potential side effects on my son's learning. In the meantime, he was classified ADHD and began treatment for it. The neuro was convinced my son's treatment was appropriate. So my wife got one last second opinion (without changing docs) from another neuro.

This neuro gave my son a complete new work-up of prolonged eeg and MRI. Unfortunately, the neuro and radiologist were convinced they saw a tiny area in my son's frontal lobe that seemed to be consistent with polymicrogyria. Provided with this new info, my son's neuro, of course, pointed out that this may change the prognosis. But, other than reading issues in school, my son is a happy little boy who is now 7.

One New Year's Eve, however, my middle child, my 9 year old daughter, suffered a seizure. Thankfully, my wife was right there when it happened and we had my son's diastat. Trip to the ER included CT and labs. Everything normal. One of my wife's partners quickly arranged an EEG and MRI. The MRI was read as normal. Today we got the results back from the EEG, though, and sadly it's not. I don't remember the exact description my wife read but the long and short is that it was indicative of temporal lobe epilepsy. We have an appointment setup with a new pediatric neuro in our city for next Wednesday so we'll see what they say.

My daughter has given us a few scares before. When she was 4 years old, ironically just a couple of months after my son's seizures began, she screamed "MY STOMACH HURTS!" just after I gave her a bit of peanut butter to try. We, of course, had an allergy workup done. It came back normal. We saw a cardiologist-normal. Got an EEG-normal. Everything normal. In the intervening years, she's had maybe two more of these spells but my wife just chalked it up to vasovagal syncope. She's also suffered headaches so now we are second guessing that as well.

I'm just...I don't know. How could we have two kids with two completely different seizure disorders?

 

[Nakamova]

Hi bkrell76, welcome to CWE!

First off,
:hugs:

You've got a lot on your plate. Most of us here can sympathize with the frustrations of finding trustworthy medical advice and effective treatment. Unfortunately, epilepsy remains a mysterious and highly-individualized disorder, and it can be hit or miss getting a practitioner who has the experience to recognize different varieties (or the honesty to admit if they aren't sure).

Any possibility that there's a genetic component to the epilepsy, or any history in the family on either side? That might explain why both kids have been diagnosed with different types. A family susceptibility can play out in different ways in different people. One relative might have migraines, another might have partial seizures as a teen that they grown out of, another might develop epilepsy later, etc. Sometimes it can depend on the interplay of genetics and environmental triggers.

Hard to know except in hindsight, but your daughter's stomach pains may have been a symptom of abdominal epilepsy, a form of TLE. See: http://en.wikipedia.org/wiki/Abdominal_epilepsy

Best,
Nakamova

 

[Kgartner]

As the mom of a child with temporal lobe epilepsy, I just want to send you some good wishes. It is heartbreaking to have one child with this condition, and I can only imagine how difficult it was to get the second diagnosis.

You will find lots of support and information here. Please let us know what we can do for you as you walk this road.

 

[Cint]

I'm just...I don't know. How could we have two kids with two completely different seizure disorders?

Hi bkrell,

I bet you're just OVERWHELMED by having two children with seizures disorders. That is to be expected. Having one Kid with a bad case of asthma growing up was enough for me 'cause I was the one with epilepsy and a husband who traveled. Not an easy road.

As Nakamova said, it could be hereditary. Hang in there and visit here often.

 

[bkrell76]

Thanks guys. Yes, we certainly worried there was some sort of epilepsy component to my daughters stomach pain/fainting but couldn't get anything on the eeg. As far as hereditary component, No history of epilepsy on either side. My wife does have migraines but on the scale of migraines, they are relatively mild. But yes, we have wondered if that's the closest thing to a genetic component we have.

In hindsight, all my wife's pregnancies were complicated. All three of our kids were delivered at 36-37 weeks due to early labor. And my wife was on hospitalized bedrest for 7 weeks prior to delivery of my son. We have our daughter's neurology appointment today. So maybe I'll get a LITTLE more clarity on what's going on...

 

[masterjen]

Hi, bkrell76
First off, welcome to the forums and keep us posted on how your daughter's appointment goes.
As for the seizure-migraine link, it is worth checking into the history of your parents and your wife's parents if you haven't already to determine if they had migraines (or other neurological issues). I was seeing a geneticist, and there has been a link made in my case to migraines some of my grandparents had to my neurological issues, even though neither of my parents have had migraines.

 

[Cint]

As far as hereditary component, No history of epilepsy on either side. My wife does have migraines but on the scale of migraines, they are relatively mild. But yes, we have wondered if that's the closest thing to a genetic component we have.

The only other person in my family that has E is a 1st cousin. But I also have migraines along with E, some of theme have been severe. Migraines and E are like cousins. I have two grown children and neither of them have migraines or epilepsy, but both have witnessed many.

Here is more info about inherited E:

http://www.epilepsy.com/learn/epilepsy-101/epilepsy-inherited

Is Epilepsy Inherited?
Epilepsy is more likely to occur in a brother or sister if the child with epilepsy has generalized seizures.

We have our daughter's neurology appointment today. So maybe I'll get a LITTLE more clarity on what's going on...

Let's hope this dr. gives you clarity today!

 

[bkrell76]

Saw the neuro yesterday. She seemed very nice and knowledgeable. She seemed to think my daughter has a combo of migraines and maybe some sub-clinical seizure activity that was causing some post-ictal headaches. She also thinks the syncopy episodes were probably in fact seizures afterall and the clean eeg was just bad timing. I can see that BUT if this is familial, it would not go along with my son's presentation, as his eegs are a nonstop scribblefest. Who knows?

She then told us we need to decide whether or not to treat the epilepsy. She said given the nature of the eeg she read, she thinks there is a high likelihood of another seizure. She said we could kill two birds with one stone and try Topamax. My wife was hesitant because of her ongoing concern as to whether or not the AEDs are responsible for the issues with our son's academic performance and behavior. He's on the max allowable dose of depakote for his age. But...I just don't want to see my daughter have another seizure. I voted for going for the higher Topamax dose and if it causes issues, maybe step it down and take it for there. Anyone think that's crazy? I just hate what our kids' seizures do to them and to the rest of the family.

 

[lindsayschu2]

I would be very hesitant to start with a higher dose of topamax, from my own experience with the drug, and others'. While I would agree treating the seizures and migraines sounds like a good idea, Topamax does not have a very good side effect profile for many--it definitely includes cognitive challenges as well as behavioral issues. This is not the case for everyone by any means but the cognitive difficulties is a pretty high incidence. I'm not saying don't try it--but the best approach with this drug is to start low and slow. The higher/faster you go, the more likely she will be to have side effects. The overall goal is to control seizures at the lowest possible dose of a medication, and the best way to accomplish that is to start low and go slow. Any good neuro will recommend that anyway, as starting fast on this med can run a patient into other more serious side effects. I really understand your concerns and I know you want to get this under control fast--I would too. But these meds are pretty serious and need to be approached with patience.

 

[Kgartner]

I would be very hesitant to start with a higher dose of topamax, from my own experience with the drug, and others'. While I would agree treating the seizures and migraines sounds like a good idea, Topamax does not have a very good side effect profile for many--it definitely includes cognitive challenges as well as behavioral issues. This is not the case for everyone by any means but the cognitive difficulties is a pretty high incidence. I'm not saying don't try it--but the best approach with this drug is to start low and slow. The higher/faster you go, the more likely she will be to have side effects. The overall goal is to control seizures at the lowest possible dose of a medication, and the best way to accomplish that is to start low and go slow. Any good neuro will recommend that anyway, as starting fast on this med can run a patient into other more serious side effects. I really understand your concerns and I know you want to get this under control fast--I would too. But these meds are pretty serious and need to be approached with patience.

yes, yes and yes! Some side effects can be completely avoided by taking that slow approach. And if you can achieve seizure control at a lower dosage - well that's what you want! Just because your son needs the max dose of depakote to get seizure control doesn't mean it will go that way for your daughter . Hopefully it will be much easier and you will never need to see her have another one!

Best of luck to you. These are always such difficult choices.

 

[bkrell76]

She was going to start with 25 mg and gradually work up to, I believe 125 mg? Anyone have experience w/ that dose? She was going to keep her at 25 mg if we chose only to treat the migraines. She, of course, mentioned the potential side effects. My wife is on 50 mg Topamax, though, for her migraines and has never had an issue. I guess that's why I figured it would be potentially ok. I realize everyone is different, though.

 

[Cint]

She was going to start with 25 mg and gradually work up to, I believe 125 mg? Anyone have experience w/ that dose? She was going to keep her at 25 mg if we chose only to treat the migraines. She, of course, mentioned the potential side effects. My wife is on 50 mg Topamax, though, for her migraines and has never had an issue. I guess that's why I figured it would be potentially ok. I realize everyone is different, though.

I'm on 250 mg. of Topomax for seizures + depression. Another name for it is Dopemax because it can make one very dopey, spaced-out, forgetful. I started out on a low level like that, tho. But I started when I was an adult. Children metabolize meds differently.

 

[bkrell76]

Right yeah I've heard of the "dopamax" issue.

 

[masterjen]

I have been diagnosed with a probable seizure-migraine syndrome, and the drug chosen in my case is valproic acid which is also a migraine preventative. At this stage I'm on a comparatively low dose at this stage compared to what many are on for seizure control, and I have already seen at least 50% improvement in both frequency and severity of seizures and headaches. Valproic acid comes with its own side effects, but overall does not tend to cause dopiness like the topomax. Topomax can also cause lack of appetite, which is not necessarily favorable if someone is already very slim.

 

[bkrell76]

yes, yes and yes! Some side effects can be completely avoided by taking that slow approach. And if you can achieve seizure control at a lower dosage - well that's what you want! Just because your son needs the max dose of depakote to get seizure control doesn't mean it will go that way for your daughter . Hopefully it will be much easier and you will never need to see her have another one!

Best of luck to you. These are always such difficult choices.

Well, I don't think she's basing her recommendation on my son, just on my daughter's eeg results. And it's funny to talk about dosing and my son. With his previous neuro, he was on Trileptal. The whole reason that neuro thought my son had outgrown his sezures after two years was because after the initial titration onto the meds, he never increased his dose. The dose was considered very low and the doc didn't think it was doing anything when he started to wean him off. But as soon as we decreased it, the seizures started back. So when we switched neuros, he hit my son pretty hard w/ depakote. But we really didn't notice any difference behavior-wise. My son became very adhd after his seizures began. We first thought it was the keppra that he was initially on. But it followed across all the meds. Our neuro finally consented to let him on anti-adhd meds. It was a night and day difference.

 

[bkrell76]

I have been diagnosed with a probable seizure-migraine syndrome, and the drug chosen in my case is valproic acid which is also a migraine preventative. At this stage I'm on a comparatively low dose at this stage compared to what many are on for seizure control, and I have already seen at least 50% improvement in both frequency and severity of seizures and headaches. Valproic acid comes with its own side effects, but overall does not tend to cause dopiness like the topomax. Topomax can also cause lack of appetite, which is not necessarily favorable if someone is already very slim.

Yep, my son is on depakote. He's never had migraines but I know he's never had a seizure since he's been on it.

 

[Kgartner]

Well, I don't think she's basing her recommendation on my son, just on my daughter's eeg results. And it's funny to talk about dosing and my son. With his previous neuro, he was on Trileptal. The whole reason that neuro thought my son had outgrown his sezures after two years was because after the initial titration onto the meds, he never increased his dose. The dose was considered very low and the doc didn't think it was doing anything when he started to wean him off. But as soon as we decreased it, the seizures started back. So when we switched neuros, he hit my son pretty hard w/ depakote. But we really didn't notice any difference behavior-wise. My son became very adhd after his seizures began. We first thought it was the keppra that he was initially on. But it followed across all the meds. Our neuro finally consented to let him on anti-adhd meds. It was a night and day difference.

My understanding is that ADHD is one of the fun things that can go along with epilepsy - my daughter deals with another of the delightful comorbidities, anxiety/depression. I'm glad that you have found solutions to both his seizures and his ADHD.

 

[Cint]

Topomax can also cause lack of appetite,

Yep, when I initially started taking it years ago, I was on a higher dose and lost my appetite plus 25 lbs. IMO, it is one of the worse meds for a child. Depakote is a med that causes weight gain. And both of these are also used for mood disorders, too.

 

[lindsayschu2]

125 isn't really considered a very high dose for epilepsy. But I'd be most interested in how quickly the taper is--if she has side effects as she goes up in doses, keep in mind it is up to you as the patient's parent to participate in decisions, and you can suggest that you slow down the increase schedule, both to minimize side effects and to see how she is doing in gaining control. Doctors have a tendency to increase too quickly, as well as take patients off meds too quickly. Most of us on here have learned from personal experience that sometimes we need to go more slowly than our doctors recommend, and being our own advocates and partnering in decisions makes our experiences with these drugs better. Just something to keep in mind as you go through this process.

 

[bkrell76]

Yep, when I initially started taking it years ago, I was on a higher dose and lost my appetite plus 25 lbs. IMO, it is one of the worse meds for a child. Depakote is a med that causes weight gain. And both of these are also used for mood disorders, too.

My son's Vyvanse evidently cancels out the weightgain effect of his Depakote! He's a rail. But, even though he's 7, he also goes around talking about wanting to eat healthy. So maybe he's consciously controlling his eating...