Neuro visit

First of all let me take a moment to say how much I just love Dawson's Neurologist. Since day 1 she and her staff have been nothing but helpful, supportive, encouraging, and most of all they really seem to be dedicated to helping solve all of the seizure riddles. Never once, during an office visit, have we ever felt rushed, or hurried, or felt like we were just " another patient"

Today's visit was no different. She spent an hour with us in the office ( 30 min of which was after hours) Intently listened to every word we had to say and then based on her knowledge along with what were telling her, she formulates a game plan that she feels will be best for Dawson. I know there are some awesome Pediatric Neurologist out there but I gotta tell ya, It would be awfully hard to convince me that he would be better off with another Doctor. My hats off to Dr. Martina Bebin and her wonderful staff!!

Ok, now that the commercial is over let me move on to some of the visit highlights.

We are going to start weening the Keppra as she also feels that it is playing a part in some of his over the top, dramatic, mood swings. Zonegran is going to be our new drug for a while. She feels based on the info she has that this is a good fit for him as it covers all the seizure types Dawson has a history of having. I gotta tell ya, its not going to be very hard for me to say goodbye to the Keppra. Ive never liked it and really don't think it's done anything for him as far as stopping the seizures. Helping to control them?? Yes Stopping them?? NO

If you are reading this and have tried Zonegran please weigh in under the comments section. I know every drug and every child are different and the results will different for each and every one but I still would like to know what experiences are out there with Zonegran. Good or bad please let us know.

Next thing, Dawson's case, based on his last 8 day VEEG, PET scan, and MRI will be presented at conference on January 27 at UAB. They will decide, based on the evidence, what options are available to us based on this information. Im trying not to fret too much over this one. Im looking at it as one of those " it is what it is" kind of things.

We voiced some concerns about his speech today as well. Some quick background info on this because it's been a while since we have talked about him developmentally. Dawson can talk. As a matter of fact he can say many words. He just doesn't say a lot on his own, which is the concerning part. He can repeat or mimic most of what you ask him to say but we want him putting words together. He can say " more" or " juice" but we can't get him to say " more juice"

We feel that he should be doing more I guess is the point, so were wanting to attack that a bit more aggressive. We have a visit scheduled on Feb 2nd and while there, we will be doing a sleep EEG ( provided Dawson Cooperates) and then we will have a full speech evaluation done with the speech therapist on her staff.

We also talked briefly about school. We are wanting to start pre school with Dawson, but that opens some doors that I don't know if we are ready to walk through yet so we will be talking through this over the next few weeks. We feel he needs the social interaction with other kids besides his sisters, but can't just drop him off at a public pre school because they have no idea about his seizure disorder and were just not comfortable with that. On the other side of that is that he technically has no developmental delays, so were not sure if he qualifies for a " special needs" school... ??? So yeah, we just not sure what to do yet. His neuro says he will qualify based simply on his diagnosis but then again we kinda like the idea of public school for him... Now that your as confused as we are....................

So all in all, a good visit and we feel we got a lot accomplished. Were looking forward to hearing about his case at UAB and seeing what options we have, and we pray this new drug were fixing to try will stop his seizures for good!!

Thanks for checking in on Dawson and we love you

Jeff and Allison