You-did-what!?

This week has been an emotional roller coaster for our family.  On Wednesday our Neurologist called us out of the blue.  She asked me to tell her the exact amount of Vigabatrin in each of the little packets that we give Bridger.  I explained to her there is 500mg in each packet.  Sounding a little panicked she told me she'd call back in a few minutes.  When she called back she delivered some awful news.

She had been overdosing Bridger since we started his Vigabatrin treatment.  For 2 1/2 weeks!  This was why his seizures had stopped so quickly.  I was mortified.  The highest dose for his size is only 2 packets a day and we have been giving him 4 since we stared!  She told us to immediately put him down to 2 packets a day.  I did not want to.  He had been doing so well but he had a little seizure and I was so worried that if we lowered him he would definitely have seizures.  It was like she was condemning him to have more.  She would not let us do it because there have not been any studies done on such a high dose.  Obviously they need to do more studies. 
What I was more upset about is that she wanted us to lower him down immediately.  This is when my research pushed through.  I explained to her that I will not be lowering his dose immediately.  He can not have his dose instantly cut in half.  Generally with seizure medications if you taper them down too quickly it will cause them to have even worse seizures.  The Neurologist was upset.

I agreed to lower him but we were upset and frightened.  I began researching results with overdosing on Vigabatrin.  I about passed out. Coma, unconsciousness, and/or drowsiness were described in the majority of cases of vigabatrin overdose. Other less commonly reported symptoms included vertigo, psychosis, apnea or respiratory depression, bradycardia, agitation, irritability, confusion, headache, hypotension, abnormal behavior, increased seizure activity, status epilepticus, and speech disorder.  No wonder he was having such a hard time breathing.  No wonder he was completely out of it.  It all made sense.  Now I was angry.  What if he had gone into a comatose state? 

Jake and I decided it was time to get a new doctor, after we explained to this one exactly how upset we are.  She acted like it was no big deal and accountability needed to be taken.  In fact since we went to the hospital they have never treated this like the emergency that it is.  We proceeded to email our doctor, we felt like that was the most appropriate approach.  This is what we wrote:

"We are deeply disappointed that we were wrongly directed in the Vigabatrin treatment.  The fact that he is a happy little boy again has been a miracle.  Lowering the dose of his treatment due to lack of knowledge or a mistake is heartbreaking.  Accountability needs to been taken for this.  Please do not apologize or state that you understand.  Unfortunately you cannot understand although I appreciate your empathy and sympathy.  Fortunately for you, us, Bridger, and the Neurology staff of PCMC the overdose that we were directed to give had a positive effect instead of a negative (such as coma, unconsciousness, apnea...).  Had this negligence caused our child to be put into a comatose state we would be having a different discussion. 
We will taper him down to 10ml.  Know however that we are willing to use the higher dose because it is working on him.  Perhaps new studies need to be taken into consideration.  Due to this incident we will be seeking second opinions for all treatments conspired for Bridger.  This will not happen again.  Thank you for your time."  

Jake and Cretia Stallings

Can you guess who said which part in this email?  Haha.  Needless to say, after our doctor blamed us for her mistake, she decided to pass our team to another doctor.  We will see how this goes.  Our wonderful Aunt Margret contacted the Child Neurology Foundation.  They were very upset with the treatment we have been receiving.  They are now behind us 100% now and will make sure that Primary treats our son's disease with the haste that a neurological emergency deserves.  We are meeting with our new doctor on Monday and if there are problems I have another doctor on hold for us as well.  We are done messing around with these people.  This is a much more angry blog than I meant to post but I have never felt as belittled and unimportant as I have at Primary.  I hate being THAT parent but unfortunately this is the way it has turn out.  At least things are going to get done whether they do it willingly or not.  Thanks for all the support everyone!!!