going back to old (failed) meds?

[KarenB]

OK, so we're at neurologist's earlier this week, and reviewing options.

Five meds failed in this order (Keppra, Topomax, Trileptal, Lamictal, Depakote). Actually, he didn't fail Lamictal, but had allergic reaction. And Topamax did work for several years, and then stopped working.

So...the neurologist was saying.."Well, let's try Keppra, and see what happens," and I reminded him that he took Jon OFF Keppra 6 years ago because it was like giving water -- no benefit whatsoever.

And then he said, "Well, sometimes after a period of a few years, the meds might work when they didn't work before."

So...for those of you who have had epilepsy long term -- have any of you gone back on a drug you previously failed and had it work the second time around?

I'm just highly dubious about this.

We ended up putting him on Zonegran, which haven't tried yet. It's a little similar to Topamax, which did work for awhile, so here's hoping...

 

[epileric]

I think I was made to try a drug that didn't work previously though I can't remember which because we tried a bunch in a row back then. I know it wasn't Keppra though.

I do think what your doctor said about meds that didn't work sometimes working at a later date made sense.

Our bodies do change and many people will testify how the AEDs they've used have stopped working. If our bodies change & they stop working why wouldn't ones that didn't work now be effective?

 

[Cint]

Yes... our bodies Do change over time, especially if it is a child's growing body... therefore a medication that previously failed may work this time.

I was on a high dose of Topomax years ago, along with something else, but my dr. took me off and tried another drug (don't remember what). We tried several different meds, and then decided to go back on Topomax, but at a lower dose, along with 3000 mgs. Keppra.

 

[AngelwithDentedHalo]

If they worked at first, then quit working, it's possible that Jon's body became resistant to the drug, don't know but it's happened to me. Certain over the counter medicines work at first for me, then quit working. Doctors don't give me penicillin cause my body is resistant to it, so they give me something else if I need an antibiotic.

 

[KarenB]

I was on a high dose of Topomax years ago, along with something else, but my dr. took me off and tried another drug (don't remember what). We tried several different meds, and then decided to go back on Topomax, but at a lower dose, along with 3000 mgs. Keppra.

And...did it work?

 

[KarenB]

Yes, his body did grow resistant to the Topamax after 3 1/2 years (one one seizure during that time). And maybe that's what's happening right now with Keto diet?

It seems there'd be more chance of a drug working that DID work previously and then stopped working than a drug that never worked to begin with.

 

[AngelwithDentedHalo]

With me, if my body becomes resistant to a drug, it never works again but luckily it's never been a drug that I always need

 

[Cint]

And...did it work?

Not completely. Nor did brain surgery or the VNS. I have refractory epilepsy.

 

[KarenB]

urggg...no fun -- that refractory epilepsy. I don't think Jon can technically be classified as such, because he's had 3 long periods (2 years, 18 months, 11 months) where he was able to be seizure free. He was on Topomax for the 2 year and 18 month periods (just one seizure in between), and on the Keto diet for the 11 months.

I was just reading in the Epilepsy Therapy Project that some people with multiple drug resistance have a type of metabolism that quickly inactivates or isolates drugs, causing them to be less effective.

I found that a bit interesting. Jon was on 1000 mg of Depakote (a lot for a little guy weighing 38 pounds) in 2011 when he went into status. While he was in ER, they ran a blood test, and his Depakote levels were in the 20's when they should be between 50 to 100. So, while he was in ICU, they were giving him 1250 mg a day of Depakote by IV, and even then, he didn't reach therapeutic levels. However, just 3 weeks prior, he'd had levels in the 70's. Something with his metabolism....apparently.

 

[KarenB]

The good news is that after 1 week on Zonegran (and not up to standard dose yet), Jon's seizures have reduced by about 30%. So, hopefully that'll kick in and won't have to agonize about meds for a good long while. This is a new drug for us.

Also, he gets another sleep EEG next week to see if something like Lennox Gestaut has developed.

 

[Cint]

After my left temporal lobectomy, I was seizure-free for nearly two years. Then they came back with vengeance. We tried 8 more meds. Then I had VNS surgery and that has reduced the seizures for me.

If your son also has Down's Syndrome, wouldn't that play a part in Epilepsy, as some folks with Down's Syndrome do have a hard time with seizure disorder(s)? Here is an article I read:

Individuals with Down syndrome also have a higher rate of developing seizures in comparison to the general population. Although the reason for this has not been fully clarified, it is suspected that individuals with Down syndrome are susceptible to seizures due to abnormalities in the structure or function of the brain.

Epilepsy is a common feature of Down syndrome, and the prevalence of epilepsy advances with age. The onset of seizures can occur at two stages of life: either at a very young age or in the third decade of life.

 

[KarenB]

Yes, there's a somewhat higher rate of seizures in individuals with Down Syndrome. I think incidence of seizures in general population are something like 1 to 5 percent, and with Down Syndrome children it's about 8%. These are usually infantile spasms or myoclonic seizures, which Jon did not have, but could also be tonic/clonic, which Jon began having at age 1.

And yes, some adults with DS develop seizures in their 20's or 30's (adults with DS have a 17% rate of having seizures) and by age 50, about 46% have seizures. This may be related to Alzheimers, which is highly prevalent in adults with DS.

By contrast, kids with other types of mental retardation have up to a 44% chance of having seizures.

A lot of kids with Down Syndrome also have heart issues (which Jon does not), and this could trigger non-epileptic seizures. Another hypothesis is that nutritional deficiencies may play in (they tend to have issues with absorbing and metabolizing vitamins and other essential nutrients). Seizures also could be related to structural abnormalities in the brain, or to the neurotransmitters being either over-excited or, alternatively, inhibited (something to do with GABA). However, while all children with Down Syndrome have brain abnormalities, 92% of them do NOT have seizures.

Generally, children with DS who have seizures are able to have them managed well with AED and/or the ketogenic diet -- they aren't normally intractible. In Jon's case, his docs think something else is going on along with his DS.