Tuesday, June 28, 2005

Seize the Day

So, as I'm sure I've mentioned about a jillion times, Ethan has a seizure disorder. But what I don't think I've mentioned is that it's not just any run-of-the-mill seizure disorder. It is the MOTHER of all seizure disorders. Because in this family, when we do something? We go ALL THE WAY.

Ethan has Lennox-Gastaut syndrome, or LGS. It is hard to pronounce and I never spell it right, which is fitting for a syndrome that no one can figure out how to treat.

The first time we were told Ethan had LGS, we weren't really affected. We knew he was prone to seizures, we knew he had been having seizures for about a year, and we knew his brain damage was permanant and widespread. Our first reactions were something along the lines of, "Yeah, so?" We thought, give him some medicine, the seizures will go away. We'll go back to our lives.

Then, I started Googling.

I only linked to one site above, but if you are in the mood to be depressed, do a little reading on the sites Google finds for Lennox-Gastaut syndrome. Heavy duty. When you see the words "severe" and "devastating" in a description of something your child has, something in you snaps. I was at work when I started this research, not such a good idea for a hypochondriac with a panic disorder and mild depression. I was a wreck for days. I kept picturing Ethan becoming a shell of a person, wracked by seizures, his constant good mood disappearing, losing what little skills he had gained... smiling, laughing, babbling.

After a while, I snapped out of it. I looked at Ethan and didn't see the hollow face I imagined would one day appear. He was alive, and happy, and full of love. Yes, he might have more trouble down the road, but for now, he was here and he was laughing and I was a fool for missing out on every moment of it.

Ethan has dozens of seizures a day, which sounds a lot worse than it actually is. At least, we have learned to deal with it and things don't really seem so bad. On good days, he has 15 or 20 visible, obvious seizures. On a bad day, he could have 50, 60, 70 or more. The types he has last less than a minute, and usually only look like he is staring off into space, lost in his own world. He also has tonic "drop" seizures that are more obvious. With these, his arms go out and stiffen and his head drops down. These started when he was in daycare and were what led the doctors to his eventual diagnosis.

It has been about a year since we learned the name of his seizure disorder. For that year, we have been trying different medications. Topamax, a drug also used for migraines, seemed to be working for a while. His seizures would decrease down to 10 or less on the best days. But after a few of weeks of good control, his seizures would start to increase in number again. The dose would then be increased, and we'd go through the cycle again. In the past couple of months, between the hip surgery and all of its drama, we have reached the maximum dose for Ethan's weight. But still, the seizures keep breaking through.

I read enough about LGS to know that Ethan will probably never have full seizure control. I had accepted that he will always have some seizures. Once we got used to his daily routine, it became almost invisible to us. We can carry on a conversation while rubbing Ethan's arm after a seizure, and barely register that one has even occured. They are like a quick sneeze. Life goes on afterward.

Today I had to call Ethan's neurologist's office to straighten out the insurance mess for his seizure meds again. While I was on the phone with the nurse, I left a message for the doctor. I told the nurse to let him know we were on the max dose of the medication and he was still having between 15 and 30 seizures most days. No big deal, nothing worse than before, but I just wanted to let him know.

He called me back 7 minutes later. Seven. That is never a good sign.

Dr. J is a good doctor but a horrible comforter. He has the worst bedside manner of the dozens of doctors Ethan sees. He is as dry as burnt toast. I'm sure I will get into Dr. J stories with my Ethan history, but suffice it to say I have cried more than once after speaking with him. He is blunt and unemotional and never tries to cushion the possible negatives. On top of all that, I am afraid of him. I have been scolded for not contacting him sooner with different issues, even though I am new at the whole "kid with seizures" thing and don't really know what I'm doing. My only excuse for him is that doctors who deal with children's brains probably don't have much time to be friendly. They are too busy giving out horrible news to terrified parents and kids. For that, I guess I'll give him the benefit of the doubt.

So Dr. J called me back at work and my stomach flipped. Why-oh-why was he calling me back? We already have an appointment in a few weeks, can't this wait until THEN?

He asked me to repeat my story about Ethan's seizures and then said he didn't realize he was still having so many seizures. He wanted to know if we saw the neurologists in Boston when Ethan went for his hip surgery. I tried to explain that No, he didn't need the doctors there because he was doing fine with his seizures after the surgery. He had so many pain meds running through him that he was completely relaxed and calm and had less seizures than ever before. I swear he even had a day with NO seizures. (That would have been an exciting event, if it weren't for the ICU and the body cast and all.)

So Dr. J wants to see us this Friday, before he leaves for a two week vacation. He wants Ethan to have labs drawn, and we'll probably start him on a new medicine. Which, he was kind enough to point out, most likely won't work anyway. Yay.

Then he said the words I had been dreading. "I will probably send you to Boston to meet with the doctors there. I think we may have to start him on the ketogenic diet."


The ketogenic diet is a long practiced treatment for seizures, dating back to before the drugs had been developed. It is a diet of almost all fats, and almost no protein or carbohydrates. Everything I've read about it sounds like it's the Atkin's diet on steroids.

The diet is very effective at treating seizures, bringing about 2 out of 3 patients to much better or even complete control. For that reason, it is definitely worth a try. Even though something tells me that at the rate we're going, it isn't going to work either.

Of course, it has its down sides, too. The diet is very difficult to maintain. The child cannot have ANY carbohydrates or sugars, or he could spiral into even more seizures. This means Ethan's favorites, bananas, are completely off limits. The meal plans are very specific and structured and a nutritionist has to be closely involved. The inital phases of the diet mimic starvation. The child cannot have any food for a day or so. They must be hospitalized to ensure everything goes properly. Some things I've read say that the child must be in the hospital for up to a week or longer until the diet has reached its therapeutic level.

Hospitalization. For up to a week. Or longer.


After hanging up with Dr. J and Googling myself silly, I just sat at my desk and stared at the screen. I felt so goddamn sorry for myself, and for Ethan. I should have known this was coming. Every time things start looking up in one area of his health, we get slammed with a problem in another.

Last Friday, we headed into Boston for our follow-up visit with the surgeon. Ethan has been tolerating a sitting position and is 99% back to himself. The cast is gone, and he only needs his hip brace when sleeping. They don't need to see us again for three whole months. We got a reprieve, a season's pass to enjoy the summer and relax. Breathe again. It felt wonderful.

Then only 72 hours later, the pass was revoked and we were back into the endless doctor's appointments, time away from work, away from CG, hospital stays, being far from home....

It was too much to take. I went into the bathroom and cried. I was physically, emotionally, mentally exhausted. Drained. I felt like I had nothing left to give. We just got our lives back together, and now we have to start all over again. It just doesn't seem fair.

One of the hallmarks of LGS is a "spike and wave pattern" on the child's EEG's. I feel like that is the symbol of our lives the past few years. We go through a spike of stress and worry and hectic appointments, then a slow wave as the problems recede. But every time, just as we think things are calming down we get hit again with another spike. It's neverending.

I'm over the initial spike and feeling a little better. Getting home and talking to Jete helped. There's always a release after I unload some of the worry onto him. We can share the burden together and somehow it isn't so daunting.

I'm trying not to go crazy with worry and anticipation of what might happen. Maybe we can wait a few months before trying him on the diet. Maybe the Boston doctors can consult but he can do the hospitalization locally this time. Who knows.

All I know right now is I'm tired. And his doctor gets to go off and have a vacation. But this? Is IT for me. There are no vacations. I will never have a break from this life. EVER. Sometimes, that is really depressing.

But then I start to snap out of it a little. Ethan smiles and laughs, and I remember that there is a chance we could lose that some day. So I better buck up and start enjoying him while he is still himself. Truth is, I could probably learn a thing or two from him if I stopped being so damn mopey. Life is about right now. Live it while you've got it.

Carpe diem, Ethan. Damn right.


KGrams said...

I am saying a prayer for you and Ethan. It is tough not to be sad, weepy and mopey, but you are correct in that you can learn from him and that you should enjoy Ethan as much as possible as he is a very special gift that you have been given.

While I am not a big religious person, I do believe that God never givees us more then we can handle. (I think some days he just has way more confidence in us than we do ourselves.)

Topamax Side Effects said...

My name is Maree Sneed and i would like to show you my personal experience with Topamax.

I am 27 years old. Have been on Topamax for 3 months now. Had severe debilitating migraines at least 2x a week. Had to stay in bed. I have a 7 year old. I was missing out on everything. Now I can get out of bed and get on with my day. I am down to maybe 1 migraine a month and it is functional not crippling.

I have experienced some of these side effects -
weight loss, no appetite, severe mood swings, emotional, yucky taste to cola, thirsty, thirsty, thirsty, extreme fatique

I hope this information will be useful to others,
Maree Sneed