March 21, 2006

Today's visit to Johns Hopkins

Today we spent most of the day at Johns Hopkins Hospital. We met with Dr. Vining and had Rob's sister, Mary, meet us there to be in charge of baby wrangling while Aria spent the day playing with Bella at Rob & Helene's house. We truly are very fortunate to have so many people in our network of friends and family who are willing to help us while we go to all these appointments.

The trip to Johns Hopkins was not exactly what we expected. We thought everything would become more clear after meeting with them and that was definitely not the case. Dr. Vining seems wonderful and she was very informative, but noncommittal. I think basically the MRIs and EEGs are not recent enough and she wants to see the results from those before she recommends further, more involved testing. She also talked about possibly trying the Ketogenic Diet first to see if he has success with that--I hate the idea of trying to do this diet, but it has been very successful for a lot of people so there must be something to it.

Dr. Vining also said she agreed with Dr. Young's opinion of following two separate courses of action simultaneously: try to control the seizures (occurring every 2-3 days) with medication, while having additional testing done that could ultimately lead to surgery. She suggested choosing one epilepsy center to work with if and when we get to the point of intensive testing because each center would redo these tests prior to any surgical considerations. So that leads us back to the idea of figuring out who we would want to perform a surgery we haven't yet decided or been recommended to have done. It's all very circular thinking.

The surgeons at Johns Hopkins who do this type of surgery are Dr. Ben Carson (who basically walks on water in the neurology world) and Dr. George Jallo.

In a couple weeks we will be meeting with Dr. Derek Bruce, a neurosurgeon at Children's Hospital in DC. He is also supposed to be excellent.

So, I guess if surgery is the way we go, these are the three surgeons we are currently looking at, but like I said, nothing is definite, nothing determined. Hopefully as we continue with testing, we'll figure out what is the best decision.


h said...

I found your blog totally at random, but thought I'd pass along this link regarding epilepsy. It does discuss the ketogenic diet and there are references to more details at the bottom.

There are also various vitamins or other supplements where there is some evidence that they reduce seizures, such as melatonin used at bedtime. I guess it could be a starting place for asking questions of your doctors.

I haven't read all your posts, probably you know all of this and more, but thought I'd drop a line anyway.

Mama Lisa said...

Thanks for posting a comment, I have read a little about herbal supplements and vitamins but we haven't pursued this yet. The link you sent has some interesting info on the ketogenic diet too--it just sounds so scary and incredibly restrictive. Our son is only 2 years old, and we're doing well just to get him to eat a good meal without the added difficulty of making sure he eats every bit of a specifically measured out meal! Although this would be difficult, we aren't ruling anything out yet. Do you know anyone who has success with either of these options?

h said...

I don't actually know anyone with epilepsy, sorry. I just read about alternative health studies quite a lot, and knew I'd seen something about nutritional supplements or diet and seizures.

If the ketogenic diet is high-fat and high-protein, it might seem gross to an adult but I would think hamburger and bacon and cheese snacks and so on would be fairly palatable... but that's probably because I have a kid who hates veggies (and most fruit, for that matter).

Try searching the PubMed medical database for topics like the ketogenic diet & epilepsy, or any of the nutritional supplements and epilepsy. Traditional treatments involve thousands of dollars in profits, so you can bet someone is advertising them constantly to doctors. Vitamin E involves little to no profit, so its benefits are probably not being advertised. This is my opinion from having read about a lot of alternative therapies for various conditions.

Mama Lisa said...

Sorry it has taken me so long to respond to your posting, I really appreciate your comments. There are a lot of alternatives out there and from what I've heard, if the Ketogenic diet is going to work, you'll know after just a few days, but it does involve a hospital stay to set up and monitor the diet.

People sometimes scoff at alternative treatments, but it's interesting to note that the medical community doesn't know why the ketogenic diet, medications or the vagus nerve stimulatior work to control seizures. Perhaps this contributes to the reason that these treatments are not always successful which can lead to multiple drugs and therapies in the effort to control seizures.