Weaning

Last summer, while Ashley was not in school, I was determined to try and reduce/eliminate some of the medications she took. I just felt like she was reaching a point where the side effects of the medications were worse than the actual condition they were supposed to be treating. That is especially true with seizure meds.

At the beginning of the summer, Ashley was taking Depakene, Keppra, and Trileptal for seizures. She also was taking Clonidine to help her get to sleep at night, Risperdal because many, many years ago before she learned to sign well she would communicate through behavior and Risperdal is a behavior med, and Straterra for ADHD symptoms. She also was taking a low dose birth control pill to regulate her hormones because we would see more seizures with hormone fluctuations.

So I targeted the two meds with the worse side effects – Keppra and Risperdal. Through a very, very slow weaning process that consumed the entire summer, I was able to successfully eliminate both medications without any adverse effects to Ashley. Her seizures did not increase nor change in intensity, and her entire mood improved once the Risperdal was out of her system.

Now I’m wondering if I should try again with some of her other meds this summer.

Ashley still does have seizures, but very, very infrequently. Unless she is sick or getting sick (she does have a lot of ear infections), we see no seizures. In fact, a seizure is sometimes the first indication that she has an ear infection. I’m wondering if I should try to maybe not eliminate the Depakene but reduce the amount she takes.

Depakene can have a negative impact on one’s liver. Ashley started life with a liver deficit because her birth mother was an alcoholic. While on Depakene, Ashley does get frequent blood work done to monitor the status of her liver. I would like to think that I could lessen the impact to her liver if the dose of Depakene she took was smaller.

She has also been on Clonidine for a long, long time. While I haven’t noticed any side effects to that medication, I would still like to reduce the amount of meds she is taking, especially if she doesn’t really need it any longer. Sleep has never been one of Ashley’s well-honed skills, but I have noticed in the last couple of years that she is adjusting to the routine of sleep. Now instead of getting up 4-5 times a night, there are only 2-3 nights a week that she gets up at all, and then it is usually just one time. So maybe her body has finally accepted the wake/sleep cycle.

I think I may start with the Depakene. Instead of 10ml three times a day, I’ll go very slowly and try to get her to 5 ml three times a day by the end of the summer. And instead of 2 Clonidine at bedtime, I’ll try reducing to one and then if that goes well, to none by the end of the summer.

I always want her to have any medication that she truly needs, and figuring out exactly what she needs can sometimes be difficult. But building upon our success last summer, I hope that if things go well this summer, her liver will be in better shape and maybe the veil or fog of consciousness will dissipate a little more.

Purple Day

Yesterday was Purple Day. Purple is perhaps the color I despise most. I don't know why, but whenever I have tried to wear something purple or to use purple in my home decorating, I feel like I have a constant creepy crawly itch all over, sort of like just realizing you have sat next to a tree full of chiggers.

But still I celebrated Purple Day yesterday.

Purple Day is an international grassroots effort dedicated to increasing awareness about epilepsy worldwide. On March 26th annually, people in countries around the world are invited to wear purple and host events in support of epilepsy awareness. This year, people in dozens of countries on all continents INCLUDING Antarctica will be participating in Purple Day!

So while I couldn't bring myself to actually wear purple (remember those chiggers), I did celebrate by holding my sweet Ashley just a little tighter and a little longer!

Ashley has had seizures all her life. When I first adopted her, she was having 2-3 a day. When she was just three years old, she had a status seizure and the only thing that kept her alive was life support for three weeks. Her doctors and I have been through many medications trying to get her seizures under control, but have never been completely successful. But things have definitely gotten better.

About the time Ashley hit puberty, her seizures changed a bit. Instead of grand mal type seizures, she changed to complex partial seizures. But the number of seizures went up to 6-8 a day. That was where she stayed for several years as we experimented with different medications, all of which had a lot of undesirable side effects. Also about this time, we discovered that she has three brain tumors. The doctors feel they are benign tumors and that they are not the source of her seizures. So, I have made the decision not to put her through brain surgery at this time.

Then as Ashley emerged from the puberty storm, her seizures changed yet again. While they are still complex partial seizures, they are shorter in duration and fewer and farther between. Now she may only have 2-3 a week. And, she can now tell when one is about to happen and can get herself into a safe position to avoid injury.

So all in all, things are much better. I hope that one day she will have no seizures, but at least things are manageable right now. Seizures will mean she would never be able to get a driver's license - well that and the fact that she is blind - but there is little else that she can't do.

So in honor of Purple Day, I resisted the urge to scratch and donned something purple. Purple Day or not Purple Day, she is one of the most important people in my life and I would do anything for her - even wear purple!

Minimizing the Fog, Maximizing the Smiles

Ashley’s semiannual visit with her neurologist this week went very well. I was very excited to tell him about weaning Ashley off two of her meds – the two that in my opinion have the worst side effects.

She had been on Risperdal since early elementary school – about 11 years. Initially it was prescribed to help with self-injurious behaviors. I always believed that if she could develop a communication system, the behaviors would be significantly reduced or would disappear. But since things in the school system seldom move at the pace I would prefer, getting an appropriate communication system in place took a while. But I was correct – as her communication, both expressive and receptive, increased, the self-injurious behaviors decreased.

So ever so slowly I have been reducing her dose of Risperdal and this summer, ended it completely. The good news – no adverse effects. In fact, she seems happier all the time.

She had also been on Keppra, an anti-seizure medication, for about 8 years. As she approached and moved through the early stages of puberty, her seizures were out of control. At one point she was on four different medications trying to control the seizures, and all we could do was get them down to 5-7 a day. Two of the four medications she took for her seizures – Keppra and Topamax – have a tendency to increase aggressive behavior. Hence, we were tied to the Risperdal.

We ditched the Topamax after just a year because it truly was one of the worst medications I have ever seen, and I didn’t feel like it was making much of a difference with her seizures. This past summer, I decided to try weaning the Keppra also. And lo and behold – after just a small increase of seizures during the weaning process, Ashley is now down to 2-3 seizures a week, and those are usually very mild. And without those other meds in her body, she is so much happier.

Playing with medications for serious conditions likes seizures can be very daunting, but I do recommend that you constantly keep an open mind about them. I don’t regret having Ashley on the meds we have now removed – they helped when she needed the help. But, I am very glad that for the moment we have been able to stop them. She is still on several meds – Depakene and Trileptal for seizures, Clonidine for sleep, Strattera for ADHD (which in her case is very extreme), and Claritin and Nasonex for allergies. And in my dreams, we do reach a time when she won’t need any medications.

For now, though, I love having a less-foggy brained, very beautiful daughter!

Seizing Less

Something strange is going on with Ashley’s seizures – I’m seeing fewer of them. And to make it even stranger, I have stopped one of her seizure medications.

Ashley currently takes 3 seizure medications – Depakene, Keppra and Trileptal. A couple of months ago, I weaned her off Topamax at the direction of her neurologist. He wanted to replace the Topamax with a new seizure medication named Vimpat. Ashley tried the Vimpat, but the side effects were horrible, and I stopped giving it to her. I haven’t told the neurologist about that yet.

But just in the last couple of weeks, she is down from 6-8 seizures a day to 1, maybe 2, and they are of shorter duration and less intensity. The only difference in her meds besides stopping the Vimpat is that she has also been on Augmentin for an ear infection. Augmentin is a common addition to her medicine regime, so I can’t attribute the fewer seizures to that.

I just don’t understand it – but I am thrilled! Ashley seems happier, more carefree, and definitely less groggy from medication.

Has anyone else experienced this? Has stopping a medication or taking fewer medications actually brought a reduction in seizures? Might it just be a change in her body chemisty/hormones as she matures?

Seizures - 1 Medication - 0

In the last 10 days, Ashley has had an MRI under anesthesia to check for tumors on her brain stem and spine, and she had her 6 month checkup with the neurologist. She and I have both been very busy trying to figure out why we are seeing an increase in the number of seizures she has each day.

Ashley is on four different seizure meds - Depakene, Trileptal, Keppra and Topamax. Yet she was still having 3-4 seizures a day. About a month ago those numbers went up to 6-8.

Her seizures are not usually bad - just lasting 45-60 seconds each. She seems to be able to tell when one is starting, and she will get herself to a safe position, not allowing herself to fall once the seizure gets underway. Afterwards, rarely is she sleepy. In fact, she is often in a much better mood - almost like the seizure cleared some of the fogginess from her brain.

But, she has had life=threatening seizures in the past, and with each of the not-too-severe ones she has, I think back to the times when things were really bad. So, I keep a close eye on her seizures, a close check on her meds, and schedule frequent MRIs.

The good news today is that the most recent MRI did not reveal any tumors on her spine or brain stem. She still has three on her brain, but they are not growing and don't need to be removed at present.

The news from the neurologist wasn't quite as good. Since the four current medications are allowing the seizures to become more frequent, he is adding a fifth one. It is a new medication called Vimpat. I need to do some research on it, but he listed one of the side effects as sleepiness. I'm not wild about that. I'm also not wild about her being on 5 medications...

So that's the Ashley update for now. If anyone has any experience with Vimpat, I would love to hear it.

Dr. McYummy Day!

Today is Dr. McYummy day! Ashley and Ronnie will be visiting their neurosurgeon. I'm anxious to get the results of Ashley's MRI, and the handsome doctor will also be checking out Ronnie's shunt.

I'm very nervous about the MRI results, but figure if there was anything major, the film reader would have contacted the doctor and he would have contacted me. But still, I'm worried.

And Ronnie is worried also. The last thing he needs right now is problems with his shunt. He isn't exhibiting any symptoms that make me think there is something wrong. This appointment is just to establish a relationship with the doctor and Ronnie.

Hopefully tomorrow I will have good news to share with everyone. But until then, here's a little bit of good news. During a trip to the pharmacy this past weekend, I needed BandAids. Imagine my surprise when I found that the BandAid box had Braille on it!!! I'm very impressed....

Not Steve Martin's Jerk

Just when you think things may be settling into the usual crazy routines....something new pops up. That always seems to be the case with Ashley's seizures. We find a medication, or multiple medications, that help for a while - sometimes a long while. Then out the the blue, things change.

For the last week or so, Ashley has been 'jerky'. Usually early in the morning and again at night before bedtime. At first, I didn't know a better way to describe it than the word 'jerky' or strong 'twitches'. She'll be sitting and playing or watching TV, and her upper body will jerk - equally on both sides. I've also seen it start up again during dinner.

These jerks don't seem to bother her, and in fact, sometimes she seems to think they are funny. And to someone not used to the many types of seizures, it can look a little funny. But knowing how Ashley's seizures have changed over her life - different types, shorter or longer, etc. - seizures were the first thing that popped into my mind.

So, after picking the brain of my dear friend, Lynnette, who has also addressed the 'jerks', I believe what Ashley is experiencing is myoclonic seizures.

So, do we need more medicine? Different medicine? Less medicine? I guess the neurologist will answer those questions for me. Has anyone else had experience with these types of seizures? I would love to hear from you...