Annual Neuro. visit

I shouldn't be labeling this as annual neuro. visit. After all, we haven't really been seeing the neuro. every year. There was a hiatus of two years or more maybe in the middle. The last two visits - last January and this August were due to the fact that when the time came to order a new prescription refill, the neuro. would leave me a message saying that she hadn't seen V in a while and could I please bring it in? Hardly or never a word about checking in on how he was doing. More like an unstated threat - you need the refill - bring him in.

So last Jan. when I took him in, he had stopped with his seizures. So she remarked - oh, that is great and I would keep him at the same medication level. I had mentioned this in an earlier blog - I am obviously not an obedient person and decided to do things my way. So I had started the weaning process. She doesn't know any of this nor the diet he is on nor the learning disabilities he has had to face or his social issues.

At this appointment, she kind of forgot all of the above. While talking to me she was keying in her notes - so that's great; you mean he stopped seizures in Dec. 2007; no it was Dec. 2006; so what is his current medication level? What about learning? What about attention? All the time she kept keying in and looking at what he was doing. He realised he wasn't part of this conversation and was busy drawing something. So, the next question was - what kind of diet are you using? Oh, I had another patient whose parents tried the atkins successfully. So why was this never given as an option or anything else? Why was it always this drug or another? Why was it that we were never told that these are the problems to be expected? Yes, the immediate problem is that the seizures need to be stopped. However, if they have happened for a period of time, what is it that can possibly to a child/to his/her brain? What should the parents be prepared for? 

So then we go on to when am I going to wean him off of the final 75 mg? So, here I say that I am waiting as he has a few changes in his life: my mother just left, his school is starting; he needs to settle in, then I will take him off the final dosage. It is still an unknown and I would rather be safe - have learned it the hard way. So she said that it was unlikely that the dosage was doing anything and that it was entirely my decision. I know that, just as it was my decision to do the previous reductions and food changes.  

She then checked his reflexes and his tremor - oh, no tremor for him. Well, that happened a while back. So she said that she had nothing more to add at this point; that we could do an EEG for interest sake and that if something went wrong we could look more closely at his carb. count and that she would like to continue seeing him every year. 

I am just so grateful that things are working well but it has taken a great deal of effort for everybody concerned. I don't know that we will go back to the neurologist. Time will tell...