What's the Alternative?

See this giant bottle of pills?

The Doodle has to take 6 of these Depakote capsules each day. Every month we go thorough a giant bottle just like this one. And, he takes another anti-seizure medicine called Keppra which is much easier to give because it's in liquid form.

Every day, twice a day he gets his meds.

Ever try giving a child medicine they don't want? Now add the component of autism into the equation; kicking, screaming, knocking the medicine out of my hands, spitting it out, gagging and throwing up.

It's primarily my responsibility to give him his medicine. Jim or my mom will do it if they absolutely have to or if for some reason I'm gone during the times he is to receive it. It's a ton of responsibility and it's a production and it's not easy and it's definitely not fun.

I wake up every morning with angst and check the clock to make sure it's not passed his medication time. Every night, I begin checking the clock and I can't wait until 7:30 pm or 8:00 pm comes around so that I can get the evening dose over with. Once he's been given his medicine, I can relax a little bit; at least until morning time anyway.

He hates it.

And, I hate it.

And I feel like I'm poisoning him with all of these hardcore drugs at such a young age. But what's the alternative? We have to do it. Because the uncomfortable few minutes two times a day and the dreadful side effects of this medication is better than him having seizures all day and all night long.

Right?

All Jacked Up and No Where To Go

Not sure what to do about divvying up the dosage of the Doodle's medication. When I give him the larger dose in the night, he won't sleep for HOURS. He lays in bed thrashing around, kicking, crying, screaming. It's not so bad when I give him the morning dose because, well, he's busy being 3. But at night, within 5 minutes of giving it to him, he's climbing the walls and he doesn't come down off his Depakote/Keppra Cocktail High for at least 2-3 hours.

Tonight around 8:00 pm I had to drive to my bosses house which is about an hour away. My mom drove with me and we brought the Doodle since I had just given him his medicine and we knew he wouldn't be going to sleep anytime soon--he was freaking out in his car seat; doing a weird scream, covering his ears and shaking his head back and forth so fast I thought he might jar something loose. My mom got in the back seat with him and tried her best to entertain him. She fed him and played with him. I couldn't get home fast enough. What was I thinking? I keep having these moments where I can't believe I brought him somewhere and regretted it but it was too late to un-do it.

I've read on the Epilepsy.com website from real people with epilepsy how mind altering these drugs are; that they cause ringing in the ears, anxiety, irritability, insomnia, blurred vision and many more side effects. How can I possibly begin to tell what the Doodle is feeling or which side-effects are affecting him? I know they make him crazy. I know they make him anxious and unable to sleep. But what else?

I've talked to the Doctors about spreading out his dosages, so that I am not giving it to him all at one time but they don't think that is a good idea. I could try switching his medication to a different one...but the side effects of those are said to be even worse and could be more life threatening.

His seizure activity has been much less than usual. We had a few completely seizure free days and then just a few break-through seizures here and there on the other days. Today he only had one that we know of. Much better than the previous 40-60 per day we were seeing.

Although, I'm still waiting for that other shoe to drop.

Meet Our New Neurologist

Joseph E. Sullivan, MD
Assistant Clinical Professor
Director of the UCSF Pediatric Epilepsy Center

We had our much anticipated appointment at UCSF for the Doodle today. We drove to the city which was well worth the stressful drive. Even though, we only saw the doctor for maybe 15 minutes, I felt much more comfortable and confident with him than any other doctors we have seen including Dr. Personality from Stanford. He was adorable and I'm pretty sure I'm older than he is. He reminded me of a cross between Ron Howard and the guy that played the Priest in the Clint Eastwood movie, Gran Torino. There's a reason Gran Torino was nominated for so many awards and I was always a huge fan of Happy Days.

Dr. Sullivan was pleasant and nice and gave me the impression that he actually cared about fixing the Doodle's seizures. He even gave me a tissue when I broke down. I think he was impressed with the Doodle Binder I prepared for him with alphabetized copies of his MRI, eegs and reports of all of his previous work-ups and imaging cds. My color coated seizure and drug history is especially fabulous. I let the nice Doctor know that I put the cutest picture I could find on the front of the Doodle binder so that he would see that he could be cute and sweet. Knowing in advance, the Dom was going to act like a maniac in his office, I wanted the nice Doctor to know that the Doodle didn't always act like such a brat. That sometimes he would even sit still for a picture. Oh, wait. Who was I kidding?

We talked about brain surgery options, and they are always the last resort; but at least I got confirmation that they are an option possibly at some point, contrary to what our Santa Rosa neurologist told us. While the brain surgery will not stop the seizures, it would at least isolate them to only half the brain.

The Doodle was horrible at the appointment. Locked in a 7' x 6' room listening to me get asked 100 questions about his health history by the nice nurse practitioner was all he could stand. He started melting down almost immediately. He finally had enough and that's when we went into Doodle Overload. He barely let her examine him. It had to be torturous to listen to him cry for that length of time. I'm used to his screaming and it was even raking on my last nerve. I know how hard it is to listen to someone else's child scream and be a brat...and it's hard not to judge the child as a complete brat; even with his autism diagnosis. I know there are so many people out there that think parents use the autism label for a free pass for their child;s bad behavior. Well, I'm playing that card. He acts horrible in public and a lot at home too. I like to think it's the autism or perhaps a side effect of the medication. It makes me feel better anyway. So if you see my child acting like a brat. It's because he's autistic and I'm entitled to living in denial with all we are going through right now. Only time will tell. My mom likes to contribute his behavior to "terrible twos"; which has been going on now for the first 3 years of his life.

All I could think about is these nice doctors can't wait for us to leave and probably don't want us back anytime soon. When she told me a lot of our appointments could be done over the phone, I couldn't help but read between the lines, in other words, "stay home and muzzle your child".

Bottom line today from the appointment, we are doubling the Depakote since he was on a very small dose, and we are taking him off the Keppra. Completely. The doctor thought the dosage was so small, it probably wasn't doing anything anyway. And Keppra has the worst behavioral side effects--like making kids crazy and agitated and out of control. Hmmmmmmm. Do you think his witnessing of the Doodle's behavior today had anything to do with him telling me to take him off of it immediately? The fact that he's been doing raspberries with his mouth all day long is not helping either.

If the increase in Depakote does not work with controlling the seizures, then we have two more medicines to try. If they do not work either, then we will talk about the surgery. He is also going to order more tests.

Before we left, we topped our day off at the Lab for some more blood work. That put the Doodle in a great mood. He can smell a Phlebotomist a mile away; that and see dead people.

So how do I feel? Relieved a little bit I guess. I like the new young and sweet doctor and the best and most ironic part of today would be that the Doodle has not had a seizure since yesterday afternoon. So for that, I feel hopeful.

4 Months = 7 Drugs and Counting

I’m at a crossroads, not sure what to believe anymore.

My online Bachelor’s degree in Epilepsy has left me dumbfounded on what is real and what to believe. I am reading as much information as I can to learn more about this but in the process, I am hearing from people who actually have epilepsy and parents of children with epilepsy that the side effects from the medicine is almost worse than the actual seizures.

I’m getting so much contradicting information that people suffering from the disease are self-medicating themselves and weaning themselves off of the multiple drugs that their trusted doctors have put them on because when on more than one anti-seizure drug, they have MORE seizures. I think these people would know since they are living with it every day of their lives—how many doctors out there are actually living with a personal bout with Epilepsy. I can speak from my own experience with the Doodle that this is definitely the case. It seems like the more prescriptions they put him on, the worse he is getting; both cognitively, behavior-wise, motor skills wise and seizure-wise. Apparently, these drugs were tested Stand Alone—they were not ever meant to be combined with other similar drugs. I also keep reading about how some anti-seizure medicines can cause seizures. There is no science to any of this—it all depends on which Doctor you go see and what their opinion is on the various drugs or maybe it’s their favorite.

I keep reading that once you have tried an anti-convulsant and it did not work, the chance of any working after that, no matter how many you try, is about 15%.

I have to ask myself why Dominic has been prescribed 7 different drugs in 4 months by 4 different doctors? I have to ask myself why these doctors cannot agree or come to a consensus on which anti-seizure medicine to use and why in the world they would even think to combine 4 different drugs at once for a 2 year old. Here is our absolutely insane list of Dominic’s medicine without explanation as to WHY they were chosen:

Dr. Jannean: Trileptal, Keppra, Depakote
Dr. Zembal: Phenobarbital
Dr. Griffith: Lamictal and Zonisimide
Dr. Olsen @ Stanford: Chlonazepam

All of these medicines have unbearable, potentially devastating side-effects that have completely changed the Doodle and not for the better. He was already a high strung, high maintenance baby with numerous quirks. He was already fussy and clingy. He was already OCD and ADHD. He already could not focus. Now, these drugs have magnified these behaviors and it’s not even like they are working stopping the seizures.
If I take just one Claritin D for my allergies, it totally changes my sunny disposition. I cannot imagine being on 4 serious medications such as these and I'm a grown woman; not a two year old child who weighs 33 pounds. I feel like I am poisoning my son.
Somebody out there must have answers. I’m anxiously awaiting our appointment at Sutter Neuro-Science in Sacramento with Dr. American (Amar Khan). Surely he will be able to save my baby, right? Or will we come home with another harmful prescription?

We listen to the doctors because they are doctors and know things we don’t know or understand but if I had a brain in my head or testicles between my legs, I would take Dominic off all of these drugs, see what happens and start over.