Well we had our first appointment with the neurologist since Jude's hospital stay. The neurologist was nice, but his bedside manner can use some work. I say that with the understanding that he has a very thick accent, and is "medical". From what I hear though he is one of the best around so I was still pleased. Jude's BP was good, weight was good, His head grew about 2cm since December, his fontanel felt good, and he is 27 inches long. The doctor decided to have us hold off on the Klonnopin, and up his topamax. He is now referring to the topamax as a "reasonable amount" vs a "small amount". He seemed encouraged that Jude's seizures are down to two a day, and we are hoping to cut them even further. I told the doctor that Jude rolled over once, and even smiled again the other day. His answer is always a dry "good good", and then he continues reading his notes. I sometimes get the feeling that he believes that due to Jude's issues he just "is". Does that make sense? He is what he is, and he doesn't expect much. I am sure that is not the case, but that is how I feel. We then talked about the fact I had a complete blood profile done last week, and the Dr did perk up at that information. He said he thought it could be beneficial. I also told him that I found out I have several relatives with the factor v leiden issue. He did acknowledge right away that can cause issues in pregnancy with the fetus. On the other hand though he also acknowledges that it really doesn't matter what caused this issue because it's already here. Then he said he understands that we would want to make sure it was nothing genetic, or nothing that would cause an additional stroke in Jude or I. Another consideration is if I do have that issue Emily may as well, and she needs to know for her future.. We then talked about the brain bleed or stroke. The doctor said normally if there is a genetic problem like the factor issue he doesn't see a bilateral stroke or bleed. I told him I knew several women on my boards that had the deficiency and had children with bilateral strokes.......but I am not sure he heard me. He said Jude has a bunch of "little problems throughout the brain which signifies a migration problem". I then asked him if the "migration problem" was caused by the stroke itself because that was my initial understanding. He said he "is not sure if the bleed caused the migration problem, or the migration problem caused the bleed". So now I am VERY confused! I was told from the neurosurgeon and the MRI specialist that the stroke at a very young age caused the brain to not form correctly, and thus caused the issues. He still maintains there is just nothing that could have been done about any of this unless it turns out there was an underlying blood issue that I didn't know about. He did seem a bit concerned about Jude's problem with not going to the bathroom. Although he did acknowledge that he does not think his GI tract portion of his brain was affected in anyway. He said if it was eating, and emptying would have been a problem from the start. So therefore he thinks this is an issue with the medication, and wants us to talk to the pediatrician. He also seemed very happy that Jude is eating baby food so well. I told him that Jude seems to prefer the food over the formula sometimes, and without any hesitation he said, "then give it to him!"
Anyway, so I will stop rambling. So he sent us on our way with new prescriptions for the topamax, a prescription for therapy at cooks (that we asked for), an appointment with him 4 months from now, and more questions. HA HA HA! No, actually the appointment was good, but do you guys sometimes leave a little more confused each time you go into a doctor? He is a nice guy so don't get me wrong, and he is helping my child. I just get....frustrated.