Med Levels

We routinely have to get Joshua's med levels checked to ensure he is at a high enough level to keep him protected - what the doctors call the "therapeutic level".  We had Joshua's blood drawn on May 30th and when we got the results last week, two out of his three meds were below the appropriate levels.  This was strange because the last time before that his levels were all good and we have not changed his dosages since, but we did start the diet so it got me thinking that perhaps the diet had something to do with it? 

His Depakote level was 33.8 and it should be between 50-100.  His Zonegran level was 9.2 and it should be between 10-20.  His Zarontin (the newest med) was at an appropriate level.  The day of his blood draw was a bit "off" and we got his blood drawn later than we should have so I started wondering if that could have affected the results.  When Dr. Korol called that evening to discuss next steps with me she suggested we increase his Depakote because his levels were so low.  My first thought was "No Way - we are on MAD to eventually get rid of the meds, not increase them".  I explained the off day we had and she suggested we take his blood again just to be sure we got an accurate reading.

So, last Thursday we had his blood drawn again.  Let me just digress here and say that he is such a trooper at blood draws now!  He never cries anymore and sits in the chair and puts out his arm.  We call it getting his "Joshua juice" taken out of his arm so he has now started saying that.  Too funny!  Anyway, today I got the results from the blood draw and although they were a bit better, they are still not where Dr. Korol wants them to be. 

Depakote - 36.7
Zonegran - 10

I have done some asking on our yahoo support group to find out if the diet can affect med levels and it turns out they can and a lot of kid's levels went down after starting the diet.  I also found out that Depakote can actually counter-act the diet because of the way it is metabolized in the blood.  I won't go into the technical mumbo jumbo of it, but some kids didn't go seizure free until AFTER Depakote was reduced or weaned.  Of course, there are kids that are the opposite and had to have more Depakote - every situation is different (which is frustrating).  So, I started thinking maybe we should not increase Depakote and if I take it a step farther maybe we should start decreasing Depakote?  It seems counter intuitive to me to increase meds when overall he is having less seizures, but I am not a Dr.   I shared a lot of this with the nurse who said she would pass it along to Dr. Korol and then get back to me.  Later the nurse called and said Dr. Korol wants to increase his Zonegran.  I like that idea better than the Depakote as I have heard that Zonegran actually works with the diet to put you further into ketosis, but I still am hesitant to increase at all when we are having less seizures.  But, then again Zonegran was added to help with the Myos and those are the ones we have the most difficulty with so maybe it would be best to increase it?  I can't help but wonder if maybe we should increase Zonegran and start to wean Depakote, but I'm also afraid because that drug might be what is keeping the grand mal seizures away.  It is so hard to know the right thing to do because there is no science in this and it is all trial and error.  We will probably leave the Depakote alone and increase Zonegran at this time, but I will keep those thoughts in my head.  The way I see it, if the Depakote is already at a sub therapeutic level and therefore not "protecting" him, why keep him on it?  I don't know, I am not a Dr.  I did ask the nurse to have Dr. Korol call me tomorrow so we can talk it through and hopefully figure out together the next best course of action.  One of the many things I like about Dr. Korol is she always includes us in treatment options and we make a joint decision on what to do.

Seizure Activity
Since I last wrote he had drop seizures the next two days (making 3 days in a row), but we haven't seen any since last Thursday.  One of those drops sent his head into the kitchen table in front of my dear friend Amy and her daughter.  It left a nasty bruise on his chin where he hit and he cried when it happened so I was worried it would scare Amy's daughter, but it didn't.  :-)  So, that means no daytime seizures in the last 5 days (today being 5) so we may be getting back on track.  He is still having Myos during nap and bed time, but they seem to be stabilizing a little in regards to numbers (around 20 per day), but the violence of them seems to be coming back a bit.  When I say "violent" I mean bigger - like the ones that are big enough they wake him up out of a deep sleep.  I am keeping an eye on them. 

We did get a piece of good news from his blood draw.  On May 30th his blood ketones were low (1.4) and when they took his blood last Thursday they were much higher (4.2).  The highest we have seen is 6, but we want 4 or higher.  That means we are doing some things correctly on the diet - yeah!  We still haven't gotten to a 3:1 ratio (can't get him to take in enough fat), but have been hovering around 2.5:1 and 2.7:1 so we are getting there. 

In Other News
I was asked today to speak at the opening ceremony on Saturday's NW Epilepsy Foundation walk.  I said yes, but now am nervous about speaking to that large of an audience and trying not to cry.  They want us to share our story and how epilepsy has affected our lives.  I think I will only have a few minutes (like 2-3) to talk so not sure how to condense everything down to that, but will try.  I definitely want to talk about Doose Syndrome and bring awareness to everyone as even a lot of people with epilepsy don't know about Doose Syndrome.  Please pray that I make it through my time to talk - so nervous!

Good night.
Michelle

P.S.  Have to share a quick story.  Joshua is so darn cute!  Daily I check his urine for his ketone levels and when I do this I follow him to the bathroom and put the stick in his steam and check out the color it turns.  He has gotten so used to this now that every time he goes to the bathroom he says "Mom - come check my thing".  Then a few days ago he must have figured out the word ketone after hearing us saying it a million times and so now he has started saying "Mom - come check my ketones" every time he goes to the bathroom.  I find it hilarious and he amazes me every day at how he deals with all of this.