I am sorry for not updating sooner. It has been a LONG day. The appointment was very productive. Unfortunately not all questions were answered but I was pointed in a direction to try to get that done. The EEG is considered abnormal. It showed waves of generalized electrical discharges with frontal predominant distribution. I got to see these waves on the EEG. He said they were not specific to a specific area like a complex partial is but tended to be more focused in the front area of her brain. Some things he said I do not agree with but at this point trying to see if some of the other things he suggested maybe gets us there anyway. He said the EEG is 100% accurate. There is no way she could have seizure activity and it not be seen on the EEG. I know there can be seizures deep in the brain and also the frontal area it doesnt not always pick them up. But at this point I am not going to pick that battle as he has agreed to change her meds. The side effects of Keppra is behaviors. The side effects of Lamictal is sleep interruptions. He said we are past the point of worry of a reaction to Lamictal, that I should have been given warnings at the beginning (I was not!). Lamictal he said does not share the sandbox well with Depakote. That the chance of a rash reaction goes from 12 to 25%. Not worth the risk for the benefit. So we agreed to taper off Keppra and add Topamax. He said Topamax is a gentle medicine. He said it is used for many different things besides seizures and there is little side effects. He did say sometimes being able to find/say your words can be a side effect but not always. To help combat the sleep interruptions we are going to give lopsided doses. Three pills in the morning, one at night. He said it may help with sleeping. We talked about adding Clonotin (not sure of the spelling it is not Clonopin) that the hospital recommended. I was not on board with it then or now I dont like to give her more meds than we have to but I agree giving something for sleeping would perhaps help with many aspects of her life. He said giving meds to combat the side effects of other meds is not a good process to even begin. That is why he wanted to try changing the dosage amounts at one time. We will revisit this later if needed. He said the staring, pupils dilating, bladder/bowel loss and hallucinations were not seizures. He did say I know my child, and he would not argue with I know what I know. But he also knows what did not show on the EEG. I do not agree with this but I am willing to take this a different route. I already had an appointment Friday with a new Primary care doctor. She also happens to work at the clinic that diagnosed her Autism. He wants me to follow up with her Pediatrician for the bladder issues and with the Autism Clinic for the other issues such as seeing things not there and the staring/pupil issues. I will get their perspective and see what their thoughts are. He is absolutely furious he has requested medical records for pretty much her entire seizure history up to the most recent records and he has received nothing. The only history he has is the EEGs and MRIs I brought and what I provided in history. He said this is NOT acceptable from the medical community. He said this tells me they do not think Kaitlyn is worth a 44 cent stamp to mail some records so we can make the best decisions for her. I told him I would work this from my side and he was going to send letters as well. I asked about what the Neuro in the hospital had said about Epilepsy is Epilepsy I do not need to get hung up on information, and research and knowing the types of seizures. That I do not need to read or research. He put his hands on his head and shook it while laughing (not funny ha ha one of those nervous unbelievable laughs) He said absolutely NOT! He said there are two people advocating for her medical needs and he said we are both in this room! He said I do not agree, by all means research and read. He said I LOVE that you do this. He loved my page of typed questions/comments as well! He told me this last time but I truly thought he was being sarcastic! LOL We go back in two months. I signed up for their online medical access. I will now have a way to email him at 2 in the morning if I questions or concerns. He said I wont get a reply back, obviously, but they will get ahold of me as soon as they can the next day. Bless you if you actually read all of this!!!!
Posted on: Wed, 12 Mar 2014 04:04:13 +0000
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