Happy Summer everyone! Again, sorry for the delay in posting...

 Carter has had control of clinical seizures since May so his Dr. thought it was time he had another EEG which unfortunately was, yet again, unchanged. We are currently discussing other alternative options of treatment for the ESES with his Dr. , Steroids and IVIG were the first ones he threw out there. Because of his already aggressive behavior we don't think steroids is best at this time, so we are looking further into the IVIG.

Carter has had 4 clinical seizures over the past couple days, which is very disheartening since he had such a nice "break" from them. This unpleasant return could be because we are in the progress of weaning him off of one of his meds, Vimpat. We, along with his Dr., feel that because he is on such a low dose of the Vimpat , it may be time to remove it in order to make room for the possibility of another, whether it be for seizure control or behavior control.

I keep mentioning Carters behaviorr and I just want to take a moment and share a few things with you regarding that matter. The majority of you know Carter as outgoing, happy and very active. He still is all of those things, however he has become more aggressive and hyperactive. Some may describe him now as just plain rude and mean. Unfortunately, this is product of his condition and meds he is currently on. We are currently working with his Dr. as well as therapist to develop a " plan of action" , he will also be seen by a psychiatrist for a behavorial medicine evaluation. This change in behavior is very hard on both families, and as we don't really want to keep "pumping him full of meds" we feel it is time to start excercising that option. Carters continual regression in Academics and  IQ are very difficult to deal with , its hard to wrap your head around the fact that our 9 year old boy has the mentality of a 5 year old, if not younger. We thought the seizures were the worst of our worries, but unfortunately they were just the tip of the iceberg we hit head on a little over 2 years ago. This is very challenging and overwhelming  for all of us and we appreciate your continued support and understanding during this time.


Much love,

Nicole

Wow, its been awhile!!!!

When I started the blog, I had every intention of posting at least once a week, well life sorta got in the way of that plan! But I am happy to say that he has been doing well the last couple of months. He did have a few more seizures since my last post, a couple of them being illness related, but for the most part things are looking positive. We aren't exactly in the clear and he hasn't had another EEG to see whats going on while he sleeps, the Dr. wants him seizure free for about 6 months before we schedule one. He continues to struggle greatly in school, he goes to 3 different resource rooms daily to try and get him on the right path, but we have seen little to none improvement. Its hard to tell whether its the seizures or medications that are interfering with academics, but I would take a seizure free Carter over a super scientist genius Carter anyday.

He has an appointment the first week in April, just a regular check up with his neurologist, but if he stays seizure free, maybe we will talk about another EEG.

As always, thank you for the love and support!

Nicole