"Testing...is this thing on"
So, yesterday 4/3/13, I called the doctor to discuss the return of side effects from the Keppra (anger & aggression) and to let them know that after a short break from seizures (11 days) he was starting to have them again.  Not as frequently as before, but one every 2-3 days.  I wanted to know if the B6 was something that we could play around with as far as dosing was concerned to alleviate the side effects again, and if I was just being impatient as far as wanting results in regards to the seizures.

During my conversation with the doctor, she once again brought up how parents tend to mistake the "terrible two's" for Keppra Rage.  I, once again explained, that I'm not taking into account the times I interfere with him wanting to gain independence or the times he doesn't get what he wants and throws a fit.  I am talking about everyday, he wakes up angry...not miserable...angry.  I'm talking about how he will walk up to me and put his hands around my neck.  How he will go up to his brother for no reason and wrap his arms around him and throw him to the ground with a strength unlike a two year old.  The knowledge of how to hurt some one and the intention to, unlike any two year.  My son was two for 6 mos before starting Keppra and he never displayed this type of scary aggression.  He was on a lower dose of Keppra at first and never displayed this type of aggression.  Brayden is my 3rd child, not my first.  I'm not a first time mother who is not aware of what the "terrible two's" involve.  I know my son, I know he is a sweet boy, a goofy happy child who is going through the "terrible two's" yes, but this aggression...this rage is not from that, it is beyond that.

As far as the seizures were concerned, she mentioned that the test results showed cortical irritability, which definitely puts him at a lower threshold for seizures, but since he didn't have a seizure during the test it's hard to say what the next step should be. She really likes the Keppra because it's the most benign medication for kids.  She also mentioned that you have to be careful with dosing on the B6 so as not to overdose a child.  She mentioned possible next steps would be to increase the Keppra to 2.5ml and maybe get the B6 up just a bit.  Our other possible option was to start him on a new medicine on top of the Keppra.  Once we feel we are at a good spot with the new med, we could start bringing the Keppra down and eventually get him off of it.  She decided she wanted to speak with Dr. Bean, the head of Neurology, to see what he thought would be best.

I was at the bank when Dr. Lang called back so she spoke with my husband regarding what next steps would be.  Here is what she said.  She first thought that we should get a video of his seizures.  She also stated that they are considering doing another 24 hr VEEG.  She stated that his test results were not abnormal enough to cause seizures, and that she feels we should increase the Keppra first to 2.5ml then to 3ml and increase the B6.  I was so angry.   Everything she said in the conversation with my husband contradicted what she told me, except for increasing his doses.  They don't realize that when I talk to them I write down everything they say.

Here is what I take issue with.  They saw a video of Brayden's episodes, that's what made them decide on the 24 hr VEEG that we just had done in December (refer to previous post).  Second, you tell me that he has cortical irritability which puts him at a lower threshold for seizures, then tell my husband that his test results were not abnormal enough to cause seizures.  And finally, with all that said and the fact that they suddenly don't think he's having seizures, they want to increase his Keppra (an anti seizure medicine) to 3ml! A medicine I don't like him being on anyway because its causing this aggression and rage.  I don't like medicating my kids to begin with, I definitely don't want to be pumping him with more of the medicine that is causing personality changes in my son and causing him to be out of it during the day.

I am part of a facebook group called Parents of Breath Holders, and a few parent's have started using Essential Oils on their kids and have gotten great results.  I have contacted these parents for info.  I am done with doctors treating me like a moron, and contradicting themselves.  I am done with pumping my child with medicine that has changed him so much and isn't even working properly.  Tired of feeling like they aren't hearing me when I talk.  I am working on slowly bringing Brayden off of the Keppra.  I am praying that these Essential Oils do the same for Brayden that they have done for other children.  He has been through so much, more than any child should have to go through.  As a family we have been through such an emotional roller coaster.  We get our hopes up constantly, only to be disappointed in the end.

Ugh, tomorrow is another day!