Watching, Waiting, and Hoping that Third Time's a Charm

Third time's a charm or so the old saying goes. I hesitate to say that things are 'charmed' around here, but I will say that my youngest son is tolerating Topamax better than I expected. Topamax is the third anti-epileptic medication that he has tried. Tried. I say that as though it's like trying a new food or a new restaurant. If only it were that simple.

I can't say for sure that the Topamax is working. He has had at least one, and possibly two, seizures at school so far this year. Both occurred earlier in October at school. The neurologist increased the dosage of Topamax to 100mg per day - 50mg in the morning and 50mg in the evening. Finding the right therapeutic dose is a frustrating game to play. And it's not a fun game as you watch and hope for seizure control and hope against side effects.

No medication is without side effects. Some side effects of Topamax are: loss of appetite, difficulty concentrating, and memory problems. There are more, of course, but those are the most common. So far, I've noticed that he's not eating as much as he used to. He's eating, but his portions are smaller. To be honest, I haven't noticed problems with concentration or memory, but I have noticed that he is a little goofy. Maybe it's just my imagination, but since the dosage increase he seems goofier than usual. Being goofy is not officially a side effect, but I have read that other people on Topamax feel this way. Since my son can't tell me how these meds affect him, I read epilepsy boards to see how teens and adults describe how they feel when they are on these meds.

Some people seem to experience little or no side-effects and the medication works wonders for them. Other people, however, seem to experience moderate to severe side-effects that make taking the med impossible. And to add insult to injury, the med provides inadequate seizure control. It frustrates me just to read about it. I'm sure it frustrates the people taking the meds and the doctors who prescribe them. Epilepsy is just infuriating and frustrating all around.

In the meantime, chocolate pudding has become one of my best friends. Fortunately, the pills are small and I'm able to put each pill in a spoonful of pudding and give it to my son. Unfortunately, the pills leave a bitter aftertaste, so I give him an extra spoonful of pudding sans pill to help eliminate the bitterness. "Just a spoonful of pudding makes the medicine go down..." Sorry.


"Be joyful in hope, patient in affliction, faithful in prayer." Romans 12:12

Eleven Years Ago Today: Then and Now

Then

On July 22, 2013, much of the world seemed to celebrate the birth of the new prince in Great Britain. Hooray for the Duke and Duchess of Cambridge! I mean that, even though I'm American and don't quite grasp the concept of a royal family. Congratulations are in order, nonetheless.

Yesterday, I was remembering eleven years prior - July 22, 2002 - when I went for a routine doctor appointment while pregnant with my second child. There were no rose-colored lenses while walking down Memory Lane this day.

He wasn't due until August 1^st, but I was tired. I wanted him to be born yesterday, if you know what I mean. The doctor said, "The baby isn't doing well and neither are you. I need to induce you today." That jolted me out of my lethargy. I started making excuses like, "I need to go home and get my husband. I need to arrange child-care for my oldest son. I don't have any extra clothes." The doctor was kind but firm, "I'm sorry, but I can't in good conscience let you go. It's time to go to the hospital." We only had one car at the time, so my husband had to make arrangements with my sister to come babysit and with a neighbor to bring him to the hospital.

I went to the hospital shortly after 1:30pm. Since my first pregnancy had been induced I already knew what to expect. Despite this experience, I was in for a rough night ahead. My blood pressure spiked dangerously high and I was given some medication to bring it down. About 6:00am the following morning I was given an epidural. Finally, I could get some rest. Or not. By 6:25am he was ready, except that because of the epidural, I was not. Because of this the doctor had to initiate a vacuum-assisted delivery. If I had only known.

The first thing I noticed after he was born was that he didn't cry. I don't even remember if I got to hold him because I passed out. When I came to about 11:30am, I went upstairs to the ICU to visit him. I wanted to hold him or at least stroke his arms and face. At this point, I thought it was just a precaution that he was in the ICU. Before I realized what was happening, the seizures started. My baby was enduring seizures and all I could do was watch. He was having trouble breathing and there was nothing I could do. Little did I know he was experiencing a brain hemorrhage.

That evening, he was transferred to Seattle Children's Hospital where he stayed for nearly two weeks in the NICU. At the end of his stay, we were told that there was nothing more that could be done for him and that we should take him home to enjoy what time was left. In all likelihood, he would soon die. By the grace of God, that did not come to pass as we are celebrating his 11^th birthday today!

My heart was happy and subsequently broken on July 23, 2002. Words like "Grade IV intraventricular hemorrhage", "seizures", "cerebral palsy", "developmental delay" and "cortical visual impairment" were not yet part of my everyday vocabulary, but they soon would be. Every year I remember this and thankfully the grief becomes less and less as I see the progress that he makes. But I digress. His party is this weekend, but we're still going to celebrate today. We're going swimming after lunch. We sit in the shallow end of the pool while he splashes. We're going to McDonald's for dinner because that's his favorite. After dinner, we're going to Whole Foods for dessert because they have the bomb brownies that he loves. Later this week I have cupcakes to make, more presents to buy, and a party to plan for this weekend to celebrate the birth of my little prince who has come a long, long way.

Happy birthday to my sweet little prince!

Now

The Lord is close to the brokenhearted and saves those who are crushed in spirit. Psalm 34:18

Medication Merry-Go-Round

Back in May I was lamenting the no-win situation of trying medication for my youngest son's seizures. At that time, we were starting the second medication (Trileptal) because the first (Keppra) had undesirable side-effects, a.k.a. "kepprage". With the Trileptal, there did not seem to be any side-effects and my son seemed to do well on it. Until the last week of May.

Shortly after Memorial Day, my son developed a dry cough. I dismissed it as being a symptom of allergies, or possibly an on-coming cold. However, as the days turned into weeks I realized that it wasn't allergies or a cold. For one thing, there wasn't the usual accompanying runny nose and watery eyes. And when he coughed, he wasn't spitting up mucus. It was just a persistent dry cough.

I began to suspect that it was a side-effect of the medication, so I did a little reading. Sure enough,  a dry cough can be a side-effect of Trileptal. Before calling the neurologist, I made an appointment with the pediatrician just to be sure it wasn't bronchitis or pneumonia. I didn't want the neurologist to think that I was a paranoid mom, so I took my son to the pediatrician first. The result? A clean bill of health. No bronchitis, no pneumonia, no nothing.

When we got home I called the neurologist. As luck would have it he was out of the office for that week. The nurse practitioner spoke with another neurologist in the office who recommended decreasing the dosage by half to see if it made any difference. It did make a difference in that it reduced but did not eliminate the coughing. Mmmhmm. The following Monday, July 1, I received a call from the neurologist's office and his regular doctor was back in the office. He wanted to wean my son off of Trileptal and start him on Topamax. I hesitated. My son had been on Topamax as a baby and he was a zombie. I said, "You know, we're scheduled to see you on Monday the 8th. Let's wait and talk about it then." In the meantime I weaned my son off of Trileptal per the doctor's instructions. Saturday was his last dose and what do you know? His coughing all but disappeared.

At the appointment, we talked about alternatives to Trileptal. Tiagabine (I think) came up as did Topamax. The doctor also mentioned Depakote, but said he preferred not to start my son on that just yet as it requires alot of blood work. I tentatively agreed to try Topamax again. We talked about possible side-effects: tingling in the hands, confusion, weight loss. Sigh.

Today, we're starting antiepileptic drug #3.

I want off this merry-go-round. I'm sure my son does, too.

Anti-Epileptic Meds: Damned if You Do, Damned if You Don't

After discussing the results of his abnormal EEG, the doctor recommended Keppra for my youngest son. I talked with a couple of parents whose children took Keppra and I visited various epilepsy boards. The common theme was: be aware of "kepprage", which is extreme irritability and anger while taking Keppra. So, I watched and waited. Maybe it was a self-fulfilling prophecy or maybe I saw what I wanted to see. (I'm trying not to swear anymore, so please forgive this next sentence.) But holy crap on a cracker...what happened to my sweet little boy? You can't tell me this is merely puberty. After 3 weeks of having him on this medication, I was done. I was done with the scratching, the yelling, the hitting, and the tears.

I called the neurologist's office with my concerns and asked for other options. The nurse recommended doses of vitamin B6 to combat the irritability. In the meantime, she would send a message to the doctor. Fine. I got some B6 and magnesium and put them in my son's nighttime pudding. The following morning, the nurse called again saying that the doctor had written a prescription for Trileptal. Both Trileptal and Keppra had to be taken simultaneously for two days after which we could discontinue Keppra. Hooray! Or so I thought.

The patient advisory leaflet for Trileptal contains warnings for the usual side effects such as: constipation, dizziness, fatigue, nausea, vomiting. Nice. It also contains warnings for: double vision, difficulty speaking, (I had to laugh because my son is blind and nonverbal. Bad form, I know.) difficulty concentrating, loss of coordination, difficulty walking, and low levels of sodium, which ironically can produce more seizures. Hmmm, you don't say. Yes, but what are the odds that he'll experience these side-effects? Well, I don't know. However, I do know that the odds are not as low as zero. When he was an infant, he was taking phenobarbital and Topamax. He was a zombie. It wasn't until he started the ketogenic diet and came off those meds that we started to see him make progress. Seriously. While on Keppra, he was angry and irritable. These meds are not to be toyed with.

I immediately realized that I was damned if I did and damned if I didn't. If I decided to continue medication, there would most likely be side effects. If I didn't do medication, there would most likely be more seizures. Either road can have serious consequences. This morning, my husband and I asked ourselves, "Is it worth it to medicate him if he only has a few seizures a year?" This is a question that is difficult to answer. You see, I had a co-worker who died during a seizure. It was only her second seizure. And she was taking medication. I think a better question would be, "If this happened to your son, can you live with the fact that you didn't try to prevent it with meds?" For me, the answer is, "I don't know." I'm not saying that to be flip. It's a no-win situation that requires careful thought and consideration.

For now, we're going forth with Trileptal. As with everything, it's in God's hands.

For I am the Lord your God who takes hold of your right hand and says to you, "Do not fear; I will help you." ~ Isaiah 41:13

Follow-up EEG: Once More Unto the Breach

You may have read here and here that my youngest son had at least two seizures in the past 6 months. You may also have read here that when he had seizures as a baby and we did the ketogenic diet; but I'm getting ahead of myself. Over spring break, my youngest son had to do a 24 hour EEG. Surprisingly, he did very well. He pulled off the electrodes that were attached to his face near his ears, and he pulled off the electrodes attached to his collarbone. Aside from that, everything else remained intact.

Two days ago on Wednesday we met with the neurologist to go over the EEG results. Needless to say, the results were abnormal. Although dismayed, I was not surprised. Back in October, the doctor indicated that given his history, any EEG reading would most likely be abnormal. Although he did not have any seizures during that 24 hour period, the doctor indicated that my son was experiencing focal spikes. He was kind enough to print out the results for us and circled where the focal spikes were on the EEG readout page. Because of this, and because of my son's prior history of seizures, and because he is at risk for further seizures, the doctor recommended medication to prevent further seizures. The doctor recommended Keppra because it has fewer side effects involving liver function. It can, however, have unwanted behavioral side effects, a.k.a. "Kepprage". If we notice any behaviors, then we'll try something else.

I'll be honest: anti-seizure medications scare me, but so does the thought of seizures. For now it's another waiting game; waiting to see if the medication has unwanted side effects. We have a follow-up appointment in 3 months. In the meantime, I'm crushing up pills and trying to hide them in chocolate pudding. I feel like I missed my calling and should have been a pharmacist.☺

Even youths grow tired and weary,

    and young men stumble and fall;

but those who hope in the Lord

    will renew their strength.

They will soar on wings like eagles;

    they will run and not grow weary,

    they will walk and not be faint. 

~Isaiah 40:30-31

It's the Waiting that Kills Me

When I am afraid, I put my trust in you. ~Psalm 56:3

The problem with being able to think ahead is that my mind tends to overreact, or worse, I start second-guessing myself. Is that what I really saw? Don't you think you're overreacting? Aren't you jumping to conclusions? If you don't do something it might get worse. You'll look like an idiot if it turns out to be nothing. See what I mean?

We're in the process of scheduling an EEG for my youngest son as it seems he had another seizure over the weekend. You may remember that he may have had one at the beginning of the school year. When we saw the neurologist in October he advised that since my son had been seizure-free for so many years, we would treat this as his first seizure. He also reminded us that sometimes seizures return with the onset of puberty. Fabulous. As if puberty by itself wasn't enough. No, really, sometimes I say, "WTF? Are you kidding me?!"

At any rate, I'd be lying if I said I wasn't nervous for several reasons. The thought of my son dealing with seizures again makes me want to vomit. The thought of going through the list of anti-seizure meds or doing the ketogenic diet also makes me want to vomit. All of this runs through my mind and we don't even have a definitive answer yet. It's the waiting that kills me. I'm good at enduring and persevering, but not waiting. Once I know for sure, then I can deal. Until then I need to breathe and try not to explode.

I sought the Lord, and he answered me; he delivered me from all my fears. ~ Psalm 34:4

Just When You Think You're in the Clear

Somewhere in the back of my mind I always knew that there was a possibility that yesterday could happen. As I was finishing lunch I got a phone call from my youngest son's teacher. She called to say that as they were coming in from lunch, my son's legs buckled under him, he turned pale white, and his lips started turning blue. His aide brought him into the classroom where it was obvious that he couldn't walk right and needed to lie down. I can't say for certain because I wasn't there to see it, but it sounded like an atonic seizure. He used to have those when he was a baby.

I'd like to think that maybe it was just the heat or maybe he was a little dehydrated. I can rationalize with the best of them, but my gut says that it wasn't heat or dehydration. It wasn't that hot yesterday, and he usually has no problem drinking fluids. Also, his teacher, his aide, and the principal all witnessed the episode so it's not based on one person's perception.

I'd almost forgotten about them because it's been so long since he's had one. Even when I wrote about the ketogenic diet last year, I knew there was a possibility of a breakthrough seizure, but I never focused on that. It's easy to go merrily along through life and then WHAM! you get kicked in the face. I refuse to get paranoid, but I can no longer be relaxed and complacent.

So, yesterday was a wake-up call to remind me once again that life is not to be taken for granted. In the 8 years that he's been seizure free, this is the only time he's had a breakthrough seizure - that I know of. Let's hope it's the last time.

"Heal me, Lord, and I will be healed; save me and I will be saved, for you are the one I praise." Jeremiah 17:14