Dr Mommy, MD*

Ever the scientist, I have decided to conduct an experiment while our doctor is on vacation. Keep the AEDs (anti-epileptic drugs) stable, and get rid of the multi-vitamin powder and Carnitor. hypothesis: Maybe these two "non-critical" drugs are actually impacting seizure control.

Cole has been on Carnitor since the introduction of the ketogenic diet in June 2010. We were told that it would help protect his liver and it would give his metabolism a boost with all of the fat in his diet.

I asked if it had any contraindications, (just like I do with any drug we go on). They said no and the literature would suggest that. It is not contraindicated with any other drug. They also said: It is practically impossible to overdose on and might cause diarrhea. Okay, diarrhea is the least of our problems, and we dismissed this "safe" drug and focused on the life-changing implementation of the diet. We had much bigger things on our plate. Time passed (almost a year) and we slowly dropped the diet. However, we chose to remain on Carnitor because it couldn't hurt to give his liver extra protection if he was on Depakote, right? The doctor totally agreed. So we stayed on it. Had blood tests, things were peachy.

Here is where I messed up.

I asked questions, like I should, and took the answers given by a medical professional to be the complete answers. Remember, as awesome as they are, doctors practice medicine. I think I scanned the prescription leaflet once when we first got it, but did not see anything that stuck out to me that would be worrisome.

This is what the fine print says on the Carnitor website (which I didn't look at until recently).

Before using this medication, tell your doctor or pharmacist your medical history, especially of: kidney disease, seizures. Um, yes. Dilated kidneys in utero, the diabetes insipidous! It may be the Carnitor that is putting pressure on his kidneys? What?! NO one thought that it could be the Carnitor and we have seen 4 different doctors regarding this issue.

Seizures have been reported to occur in patients with or without pre-existing seizure activity receiving either oral or intravenous levocarnitine. In patients with pre-existing seizure activity, an increase in seizure frequency and/or severity has been reported. NO one ever mentioned that Carnitor could increase seizure activity. Even the people in Miami. I don't remember it being in the info packet from the pharmacy, but there it is...in black and white.

Fast forward to the beginning of the week.

I am constantly trying to re-asses things and see if I can make them better. I don't really make any serious moves without Dr's approval, but I am usually the one to suggest a new route of medicating. I am the instigator. Not the norm, but I have a relationship with the doctors that is trusting and when I suggest something, they will tell me if they feel it is a good idea or not. Neither the neurologist or pediatrician has the ego where they believe that only they know what is right for my child. I'm lucky. They understand that I have dedicated my life to making a better quality of life for my son and I usually have done plenty of research before I make a suggestion.

Like I mentioned, the doctor is out. I've done stuff like this before with sugar, instigating Modified Atkins by myself, removing extra Magnesium, etc. Although I would not suggest this for anyone else. I have had 30+ years of experience with epilepsy and have worked in the medical field for a long time. I never do something like this without careful thought. Always consult with your doctor before making changes, especially with prescriptions...disclaimer over :) I thought, "Let's just hold these two and see if there is a difference". The multi-vitamin, while hypoallergenic and pricey, has to have some sort of bonding agent to keep all of those vitamins together, plus flavoring, etc. There could be something in there that doesn't agree with Cole. The Carnitor, we're off the diet, on a teeny dose of Depakote, do we really need to "protect his liver", like we have been assuming all along it was doing? I knew that we could have results, or things would stay the same. It was worth a shot.

Cole has been without his multi-vitamin and Carnitor for three days. His seizures have dramatically decreased. They are still present, but he can go occasionally go a solid 10 minutes without any type of noticeable activity. Miracle.

He has been a lot more calm and his attention span has been lengthened-CARNITOR® (levocarnitine) is a naturally occurring substance required in mammalian energy metabolism. It has been shown to facilitate long-chain fatty acid entry into cellular mitochondria, thereby delivering substrate for oxidation and subsequent energy production. Fatty acids are utilized as an energy substrate in all tissues except the brain. In skeletal and cardiac muscle, fatty acids are the main substrate for energy production. So, adding energy to a child that already has attention issues and hyperactivity. I totally see how this is another reason that it was prescribed for keto, since most children can become lethargic, taking all of the carbs out of their diet. He has been nicer and more cooperative since its removal.

Even though he is having seizure activity, most of the clustering is concentrated around falling asleep, waking up and fatigue. I even did another experiment and took him to the zoo yesterday. Without pre-loading him with drugs. We were in the sun, he got in and out of the stroller multiple times, it was incredible! Usually, once he gets out of the stroller, there is no getting back in. He paid attention to the animals and exhibits and occasionally asked simple questions. It was like I had another child! We got through 3 hours at the zoo and a long time in the car (gotta love traffic) with no extra pharmacological intervention.Awful pic, sans animals, but it was the only one I got of him actually looking. Things aren't completely revolutionized :) It was a wonderful, almost "normal" day. Yes, we had a nurse, hat, glasses, oxygen and a really heavy bag full of medication, etc., but we did it!

So here is a warning to all of you. Don't take the answers you get from medical professionals as complete information. Look up the drug on it's own website, read the entire thing. Trust the professionals, but do your research! We have had this happen to us more than a couple of times now. It has usually been in relation to some sort of AED. Most doctors will titrate to the highest dose of an AED to see if it will be effective. Usually, with Cole, the higher the dose, the worse things get. Who knows if Carnitor really did protect his liver during the diet? His lab values were always normal. I can't beat myself up about it. We have been on this drug for over a year and no one has suggested stopping it. I do know that I will be suggesting that we take him off of it, after completing my week-long experiment and having proof.

Now to figure out if that multi-vitamin is really helping. Always some other experiment/adventure to embark on. You are your child's greatest advocate. Sometimes, Mommy doctors really do know best.

*UPDATE: After polling the masses, it turns out that Nano VM has indeed been the cause of more seizures in Dravet kids. Bye-bye multi-vitamin! I LOVE my social network buddies. Ask a question, and multiple people will give you the answer. I just wish that I would have asked earlier. I need to start paying more attention to the online threads, I usually just scan them when I have the time. I could have had this important information without my trial and error experiment. Que sera sera. All of these other Mommy Doctors are invaluable to me! It is so strange how our kids are each so different, yet so the same.