Saturday, April 21, 2012

Neurology Visit, New Med Plan, Ketogenic Diet

We had a visit with our regular neurologist on Wednesday.  It was great to see her!  She has been on maternity leave for a few months, spending time with her beautiful new baby girl.  We had a long list of questions, and were so glad to see Dr. Chrusciel because she knows Levi so well, and we trust her completely.  She conferred with Dr. Arun and came up with a new med plan to begin implementing while waiting to start the ketogenic diet.  Due to the large amount of seizures in recent weeks, we are going back up on Phenobarbital.  That did not please me, but it's necessary.  It's only been a few days and already they seem to be lessening slightly each day, so that is a good sign!  We are weaning completely off Topamax by one pill a week, so it will take eight weeks to be completely off of it.  She said it's also very sedating, which I had forgotten, since he's been on it almost a year.  I was glad to hear this.  Levi has become so much more awake and animated, I didn't want him to lose that as we go up on Phenobarb, but thankfully taking Topamax down will counteract that.  The ketogenic diet and Topamax should not be used in conjunction with each other because they both have the potential to cause kidney stones and, I believe, acidosis.  Whatever the reason, I'm thrilled to be weaning some of these meds!!  The neurologists have determined that, except for Topamax, all the meds he's on (Keppra, Lamictal, Clobazam) are not even at therapeutic levels, so once Topamax has been weaned, we will begin weaning something else.  Again, this pleased me greatly!  I like the direction we are heading, and pray every day that the ketogenic diet is our miracle!  I know there will be one, in God's timing, but I'm hoping with every fiber of my being that this one is it!

We will be starting the ketogenic diet on May 7.  We will be admitted into the hospital in the morning, and begin the diet at lunch.  His entire diet will change.  The formula will be switched to ketocal.  Since he's been on  vanilla flavored Nutren Jr, he loves his bottle, so extra prayers that he will take well to ketocal are greatly appreciated!  I've tried some of the items on the diet (cottage cheese, whipped up heavy cream, scrambled eggs with heavy cream and cheese) and he's done well with them.  Four of the six meds he takes are liquid, and all of these will have to be changed over to pill form.  I have to say I'm looking forward to that.  He's used to taking crushed pills on his food, and it's actually easier to give than the liquid form.  I have found so many success stories of children who have been on the diet that I am now excited about beginning.  Please keep Levi in your prayers!

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