Email from Dr.P- medication choices?

[Denae]

I just got an email response from Dr.P

He listed our medication options at this point..

Lamictal
Dilantin
Depakote
Phenobarbitol
Tegretol
Trileptal
Keppra


She has been on some of those already and Keppra I will never allow to pass her lips again!

Lamictal I can only imagine making her all night parties worse...

Tegretol made her seizures worse, but that could have been because it reduced the levels of Topomax.

Depakote is not a good choice (according to him) because she had a toxic reaction before but is willing to try it again cautiously.

Which leaves dilantin and phenobarb...

So what is better?


Does anyone know anything about any of them that would be better than another....

I am confused and upset and can't think straight.. I have read the epilepsy.com descriptions of each of the meds he listed a dozen times, I can almost recite them from memory at this point... but when it applies to my Riley it makes it different....

[lacyndarella]

Jimmie only had experience with Keppra on your list. He tolerates it well, but you already know Riley does not. Liz has taken phenobarbital most of her life and has really good control with it. She also has taken tegretol and lost all control with it. That's not to say it's not a great drug for some people. Phenobarbital has been around forever. You have to keep track of her blood levels to make sure she isn't toxic, but sometimes the old fashioned drugs work best. I would be willing to try it, if it would help control the seizures. It can make a person kind of "dopey" though, especially if the levels are too high. That's all I really know. Jimmie's ped nuero has not reccommended pheno for Jimmie. If Keppra fails, our next drug to try will be dilantin. I hate the experimentation! Why can't there just be one drug that fixes it? But alas, there isn't so we try this and try that and then this again mixed with another. Seizures just suck.

Lacy

[langansmom]

Of the meds on your list, Langan has been on phenobarb, lamictal, tegretol, trileptal and keppra. Whew.

Pheno was when she was a baby. She slept all the time. I hated that med but she was so young so who knows how she would react now.

Lamictal was the med we had the best control on for a while but I think it started causing myoclonics (it is known to do that). It also definitely interrupts sleep. But for some it is a miracle drug, and we were told that it was the only AED that was a stimulant and not a depressant, so you don't see the mental slowness that you can see with some of the others.

Tegretol made Langan scream and didn't help her seizures. Trileptal is the "new and improved" version of tegretol. It sent Langan into her first ever status seizure, and three more after. We stopped that med and the status events stopped. I am sure it is a good med for some. We will stay far from it from now on.

Keppra made Langan a beast. No other way to describe it. Ugh.

Sorry I am not much help. Of those, I would recommend lamictal and lots of melatonin for sleep- but it's so different for each kid.

(((hugs))) We're thinking of you!

[mpalmer118]

I was actually wondering about the Lamictal, I think I remember reading that it has a better sucess rate with LGS than some other meds.

Rachel has been on everything on your list except the Depatoke and phenobarbitol, but I don't think she is a good comparison since her stuff is not seizures. Out of the list though Trileptal and Lamictal had the fewest side effects for us. We had the sleep issues with Lamictal, but that was the only thing.

Are you still considering one of the dietary options?

((((hugs))))

[grace]

In Canada, if it helps any,
valproic acid and lamotrigine (lamictal) are first choice for LGS
clobazam, clonazepam, topiramate and vigabatrin are considered good add-ons

between phenobarb and dilantin...i'd definitely pick phenobarb for my kid although with the CMT, pheno can affect connective tissue can it not? might that be a contraindication?

just a side note. today I registered the kids back to their old school. It's not perfect but I'm at peace. I had to come to a place where I knew the pros and cons of each educational option and could accept each one for what it did and then just take a leap and decide. I'm still nervous but trust it's a decent choice and we'll see where it leads. regardless, i was at peace with all three before choosing. I think it helps to know you can't predict her reaction to any of them and there isn't any one right one to try before a different one. take an educated guess and tentatively go with it. if you have any huge reservations once picking one before beginning it, then wait it out a day or so. you can always stop the med if it's not right. i know that is tough for you. you want the golden key and no more games but life is what it is so we can pray you'll get it but if not, you'll make it on to another option as tough as that is. the deciding is torture...but you've read up on them and done your part which is all anyone can ask.

many hugs,
lucinda

[Denae]

At this point I don't think we are going to try any further diet modifications. I know for some people, and especially kids with LGS it is a wonder. But at what cost though would it be for Ri? There are so many people in my house I know if Ri cried hard enough to the right one she would be given something, not only that but Ri knows how to get food from the kitchen and the pantry. She is a wonderfully strong willed little girl, which is great but you can't reason with her... she wouldn't understand anything other than she wasn't being allowed to have (whatever food) and the other 6 kids in the house were....

We have only tried one combo of aeds, which I know all carry side effects but keto is pretty hard on the body too, for a child Ri's age are there are quality of life issues to think about too.

The other concern with the diets was that the hospital we are closest too is nothing more than a little band aid station... (that is other than Brenners Childrens hospital, and they don't have the grand reputation locally that people from out of town think it may have- most people here have been there and left quickly after they figure it out-don't get me wrong, for certainthings they are good- just not neuro) anyway- How equipped would they be to treat her and not comprimise her diet? The ER docs she has seen in Lexington were so hung up on her possibly being sick that I thought I would go nuts, poking her, cathing her, x-rays.. she wasn't sick, just coming off of Topomax and losing seizure control..
Until she has tried at least two other combos and failed we are going to stick with meds... Topomax controlled her tonic clonics, which at this point is my main concern. We could live with partials, as long as they don't cluster into status, which has happened several times.

So here we are...

Lamictal is the one that seems the best for side effects, all except the not sleeping... I rememeber reading several of the kids here NOT sleeping on it...
As it is she is sleeping for 2 or 3 hours, waking up, napping another hour and then is ready to party...

I value that he values what we think, but sometimes I think it would be easier if he was one that just said "we are going to do this"

Sometimes he reminds me of House, he says what he thinks and it does come across as abrupt but he is always to the point. You never wonder what he is thinking, I like that about him.

Anyway... I don't know what is next... another day of waiting....

[Denae]

I haven't read anything about pheno and connective tissue stuff, thats worth looking into before we start anything. Pheno was the one that seems to have the least of the undesirables..




Lucinda- I am sending you an email....

((hugs))

[Lorarama]

Jac has simple partials and extremely stubborn myoclonics. She has been on:
Depakote alone - worked for ~ 5 mos, added Keppra
Depakote with Keppra - some control, then toxic on depakote
Keppra alone - worked for ~ 2 mos.
Keppra with zonegram - didn't work
Keppra with zonegram and Trileptal - trileptal helped, but not with myo's
Keppra with Trileptal - still no control over myo's, had 30+/day
Keppra with Trileptal and Klonopin - some control, but pretty fatigued
Keppra with Trileptal and Clobazam (Frisium) - magic combo that has completely controlled SP's and Myo's for 6 mos. now.

I have to get clobazam from Canada or Germany because it isn't fda approved here, but it has been miracle drug so far. It is related to valium and klonopin, but less sedating and apparently less chance of the body working up a tolerance and requiring higher doses. Maybe you should inquire about it, I've heard others doing well on it too.

Take care.

[Carly'sMa]

Pheno can have longer term cognitive effects (at least that was the case back when Carly was a baby). It was recommended as a first line drug. If it worked great, if not next in line was Tegretol. But, pheno first and if she responded, great. Carly did respond. You have to build it up in your system though. It binds to protein (I think) and it's the free stuff that helps with seizures. So, it takes a long time. Again this was with an infant. I don't know if it is given differently now. Plus, at the time they said it could impair learning.

I understand your concerns about diet and mistakes. Keto is very structured. But, how much latitude is there? Any? As far as the local hospital goes -they should be able to do it. Keto is done routinely now and any dietician should be able to follow it. OK, my 2 cents - I'd try Keto because drugs can have so many side effects. A life time of drug or trying to do the diet? Yeah, you may still have the drugs, but why not see how other people do it, how the Keto specialists teach you how to handle the child's demands and the difficult times. They must have strategies about this.

On Dilantin - I believe it can ruin your teeth, long term.

Again, check out whatever I've said. It's all hearsay.

[RathyKay]

I think you should try Keppra again. Don't you need a few more bruises on your leg?:p

Tom came home from the hospital (newborn) on pheno. He was only on it for three weeks, and he was a dopey baby on it. Our neuro said that if he needed to be on an AED longterm, we would switch him to something else as pheno lowers the IQ 5 points (at this point, I don't know if it was 5 points every year you're on it? Or just a flat 5 points?) The reason Tom was put on it in the first place was because it's one of the few they can give intravenously. Anyway, at the time, Tom didn't need to be on an AED so we took him off. If you're on it longer than one month, you'll have to wean slowly. Tom was on it for a short time, so we were able to quit cold turkey with no withdrawal affects.

I have no experience with Dilantin. Deborah's teeth comment sounds vaguely familiar. Is it the one that causes gum overgrowth? I think Porkette/Sue was on it for ages and I have some vague memory that she said it was eating away at her intestines? I assume you've posted over there for thoughts?

Tom was on Tegretol for about 1 1/2 years. At the time, I thought it was a good drug. We were too scared to switch and worry about side effects from other drugs. It tended to make him sleepy 1 - 2 hours after his dose. There were too many times I tried to get supper made and he fell asleep on the couch waiting. Just couldn't do it. And, if you read him a book after breakfast, he might fall asleep on you. From Tegretol we went (very briefly) to Trileptal (wrong med) to Depakene, and then Keppra. When we switched to Keppra, his vision / balance improved. He wasn't as dizzy and he gave up using his doll stroller for stability while walking around. So, I kind of think Tegretol and Depakene threw off his balance. And Keppra was his wonder drug.;)

[Denae]

Kathy- yea, another scare would be great, she caught my left thigh twice, we need two more trials of Keppra so my right will match!

Dilantin does have a side effect of gum overgrowth...

[lacyndarella]

Well Liz has been on pheno pretty much since infancy...she has a college degree, worked really hard to get it, and just graduated with the required GPA, but that was more the fault of tegretol than pheno...on pheno she was able to bring up her GPA to the point that she could graduate after tegretol sent her spiralling down an abyss of fog so heavy she couldn't string together a sentence. Yes pheno does dope, but it can also help. And like any other drug for every person it helps, you will find someone else it hurt. All these drugs are a crapshoot, from my limited experience. If you don't Riley doped, don't try pheno or save it as a last resort. I just found it funny that pheno lowers the iq 5 points every year...since Liz is... well... not in her 30's anymore...should she be able to walk and talk at this point? Maybe she's just naturally a mega genius and started with an iq of well over 200. And maybe doctors don't know as much about the human spirit as they think they do. Lord knows they know little enough about the brain.

[Lorarama]

Can't comment on pheno, Jac had reaction to it.

[gynwhyver]

You'll have to forgive me if any of this has been said before, because I haven't read through the entire thread yet, but wanted to relay some information that may be helpful.

Typically, dilantin is not prescribed for girls because it can cause increased bone growth, especially in the jawline, distorting facial features. Extreme hair growth is also another known side-effect.

Phenobarbital turned my daughter into a zombie, who slept 20 out of 24 hours, and when she was awake, she was extremely aggressive, plus it did nothing to stop her seizures.

She had allergic reactions with Lamictal (rash) and Tegretol (increased sz activity - status twice). Depakote alone didn't stop her from going status every 15-22 days, but Keppra with Depakote worked wonders, but Depakote and girls don't mix (can cause permanent damage to reproductive organs), so we weaned her off Depakote, and increased her Keppra to 2000mg/day, and she's pretty much seizure free now.

For more information on the drugs your dr has mentioned, please click here:

Dilantin: http://www.rxlist.com/cgi/generic/phenyt.htm

Depakote: http://www.rxlist.com/cgi/generic/dival.htm

Lamictal: http://www.rxlist.com/cgi/generic/lamotrigine.htm

Keppra: http://www.rxlist.com/cgi/generic/keppra.htm

Phenobarbital: http://www.rxlist.com/cgi/generic/phenbarb.htm

Tegretol: http://www.rxlist.com/cgi/generic/tegretol.htm

If there are any I've missed, just look them up on rxlist.

Good luck!

Gwyn

[mpalmer118]

Since our girls both got very grumpy and aggresive on Keppra, I thought I should let you know that Rachel had the same reaction to Tegrotal, except she wasn't really grumpy, but she was aggresive and violent.

((((hugs))))

[mybaboo]

Molly has taken both phenobarb and dilantin. She's been on phenobarb since birth, we're actually weaning it due to the cognitive effects.

We saw excellent control with dilantin. The biggest issues were the difficulty we had in maintaining therapeutic levels. With the liquid form, apparently absorption (at least in small kids) is kinda hit or miss. So Molly would be low one week and then high the next. We eventually switched to the Dilantin Infatabs which are chewable (we crushed them) and saw much more consistent levels. We did see gum overgrowth with the Dilantin, but we're seeing that going away since she's been off it for a year. I believe it can also cause unwanted hair growth. After a second hospital stay for Dilantin toxicity, we switched to Depakote.

The depakote has been a good med for Molly and we're weaning the phenobarb to try monotherapy for the first time ever. The main issues we've seen with the depakote is that it causes a folate deficiency for Molly that can lead to anemia when she gets sick.