Define "Risky"...

First I should say I really DO almost have finished that third installment on natural treatments for TSC and epilepsy. I really should've written it a year ago, but last year was a very crazy year. But I wanted to share this thought while I work on finishing up that other article.

Research and life experience has taught me that there are a lot of natural treatments for just about every illness under the sun. I had my daughter unassisted at home; I've cured ear infections and pink eye with breastmilk; I've cured shingles with Lysine; pertussis with sodium ascorbate (Vitamin C); the flu with elderberry syrup and/or garlic and raw honey; colic and silent reflux with diet changes and probiotics; fungal infections with coconut oil. I could go on...the list is long.

But sometimes natural treatments don't work. Sometimes western, prescription treatments don't work either. And when the discussion comes up about surgery, particularly with epilepsy, inevitably people say "but that's so risky! she seems to be doing ok...are you sure you want to do something so drastic?"

Being on the other side of four successful brain surgeries with my daughter, it's easy for me to say this, but I just wanted to talk a bit about real "risk" vs. fear of the unknown.

For those of us battling epilepsy, especially medically refractory epilepsy (epilepsy not controlled well with medication), sometimes the conversation of brain surgery comes up. It did regarding my daughter at an early age. She was 14 months old when I started seriously researching the prospect of epilepsy surgery. Red tape and insurance issues prevented it until she was 3, but she was a good candidate from much earlier on.

I guess I should start by saying the obvious. There are real risks to epilepsy surgery. I've spoken with those whose children have had strokes after epilepsy surgery. Others, their child's personality was permanently altered. Allergic reactions to anaesthesia can be fatal; blood loss is always a concern. Obviously brain surgery is a "big deal". But often parents talk about brain surgery as the absolute last resort, or NOT an option because it's so much more "risky" than uncontrolled epilepsy or being on five seizure drugs.

Some of what I'm about to say may sound harsh, but I only say it because I've been there, I've been in the place of having to make these decisions, and it feels sometimes there's no good answer. I had to do a lot of soul searching and I recommend that parents in this position do the same. What I had to do was set aside my fears and emotions, and instead look at the cold hard facts. What is the statistical likelihood of the various side effects or complications that come with the various (or limited, depending on what you've already tried) options?

What I realized is that honestly, many of the drugs she had been on had a stronger likelihood of side effects, some potentially very serious...but sometimes the side effects happen slowly, over time. So they're every bit as "risky"...but not quite as "scary". Let me explain.

Audrey's first drug she went on for infantile spasms at 4 months old was ACTH...a very very strong steroid...and she was on large doses of it. This steroid severely inhibits the immune system, such that a simple cold or mild scratch on the skin could be potentially fatal. It also put her at risk of developing diabetes, not to mention making her extremely obese.

Topamax inhibited her ability to sweat so much that her sweat glands didn't start working again until 3 years after she stopped taking the drug. In the summer time, this can definitely be fatal. She regularly got bloody heat rashes in barely 80 degree weather in the shade. It also changed her personality and due directly from the drug, her speech regressed severely, and this is a very very common side effect of the drug.

She had a psychotic reaction to a Dilantin bolus in the hospital where she looked like something straight out of a a horror movie, her BP and heart rate went through the roof, her brain activity wasn't even measurable on the EEG because it was such a mess, her eyes were rolling back in her head, but not like with a grand mal seizure...more like someone who looks possessed in a horror movie. It was scary. Her voice changed. I dont think the nurses had ever seen anything like it.

Deadly skin rashes can occur from reactions to certain seizure medications, and they are relatively common. And then there's SUDEP....ANY uncontrolled seizures that seem "mild" can snowball to where the condition is less controlled and more risky. Sudden unexplained death from epilepsy is a risk with anyone battling epilepsy, especially if the epilepsy isn't medically controlled well.

And of course, ANY prescription seizure medication is going to slow down the brain, and often the effects to cognition and learning are worse with the drugs than with them just having seizures.

Now, having been through 2 intercranial (surgical) EEGs, a left temporal tuber resection and a right temporal tuber resction within 2 months' time with my 3 year old daughter...I can say that it was very stressful. It was not an easy time. She was miserable and sore; i got no sleep. She had an irritated spot from the grids on her brain after her 3rd surgery that made her feel things that werent there; I had a mini- stroke due to stress after her 3rd surgery, and threw out my back. It went as smoothly as this sort of thing could possibly go, and yet it was still one of the hardest things i've ever been through.

BUT....over all, it has caused far fewer side effects than the drugs she was on did, she recovered surprisingly fast, and from the first night after her surgeries, we saw HUGE improvements in her cognition and speech. She began sleeping through the night for the first time in her life..even when her seizures were controlled by drugs she still woke up throughout the night. No longer.

Also there were things that I thought were just part of who Audrey was, or things i thought she'd never learn how to do, and had kind of settled with that...but since the surgeries, she's changed...for the better...she's learning things I never thought she'd learn, doing things I never thought she'd do. This is something that did not happen with any of the eight seizure drugs she has been on over her 3 years of life up to that point.

I don't want to say that surgery is *less* risky than drugs. That's silly. But I also truly do not think it is more risky. I really don't. I think it's just easier to get lulled into the "comfortable" with drugs because usually the side effects with the drugs happen more slowly and gradually than a complication from brain surgery would. Drugs or surgery can help. Drugs or surgery can kill. The positive with surgery, however, is that if it works...you're done. It's over. You don't have to deal with it for the rest of your life. You have a few weeks of hell...and then...life gets better. With drugs, it's always a battle, ALWAYS a risk of developing new side effects.

Anyway I'm always a believer in following your gut as a parent...and I"m certainly not trying to tell anyone what they should do. Our kids are all too different, and I'm not a doctor. Just wanted to throw out my perspective as someone who has been through all of it.

This post has gotten too long already but I'm hoping soon to share the details of her surgeries for those who might be going through it, so I can share what I learned through it and hopefully be of some help to those going down this same path.

Blessings.