Cook Children's Visit

Today we headed out to see Dr. Scott Perry at Cook Children's Hospital in Fort Worth. We waited all of 2 minutes before being called back where Aspynne got weighed and measured. We proceeded to our room where they were going to take Aspynne's BP before the Dr. came in, but Aspynne wasn't too thrilled about the cuff...so guess what they did? They took the machine away and said no biggie, we don't need it if it's going to make her upset. Wow. Welcome to Cook's!

We waited all of 2 minutes and the Dr. was in our room. Wow. Dr. Perry spent almost 30 minutes with us today, which is amazing! The old neurologist gave us 5 minutes max before he shuffled us out the door with no more knowledge than we came in with.

The doc spent quite some time "checking out" Aspynne, playing with her, assessing her actions, movements, etc. He stepped out to look over her MRI, came back and talked with us some more.

Here is what we learned today:

Aspynne is most likely having "partial" not "generalized" seizures. This means that they start in one part of her brain and travel to another. It is not uncommon for one to feel these coming on...which would explain why she came to me last time. It is also a clue that we need to find the part of her brain where they are starting. Dr. Perry asked if we remembered which direction she fell, if her head went a certain way, or if her eyes pulled to a certain size when she was seizing. We are pretty positive that she often goes to the right, which means the seizure is coming from the left hemisphere of her brain.

Dr. Perry was also interested in the tosis (lowering of the eyelid) that she had on the left side of her face. He asked about our visits with her Pediatric Opthamologist...and what she had said. I had breifly thought there might be a correllation, but the old neuro didn't seem interested, and I had dismissed it. Aspynne's whole left side of her face is "droopy," as if in someone that had a stroke. I read today about a similar toddler that had in fact, had a stroke.....in utero. It had never occurred to me that this could even happen, but it is a possibility.

The doctor also advised that we go ahead and put Aspynne on anti-seizure medication. We had previously been very skeptical and leery of this because of all the bad side effects the other neuro had advised us of. However, Dr. Perry explained it to us....and told us WHY it's important that we go ahead and medicate. First, while neurologists are fairly confident that one or two short seizures such as Aspynne had don't do any severe neurological damage, they are not certain of what kind of damage multiple, continued seizures can cause. Allowing her to just continue to have seizures would not be good for her or her brain, and could, in the long run, cause some long-term effects on her brain. Secondly, even though her first 3 seizures have all been less than 2 minutes, and identical, that doesn't mean that the next one or the one after that will be the same. There is nothing that says one of those seizures couldn't be the 20 or 30 minute one that causes significant brain damages and changes her life forever. The only way to stop the seizures is to medicate. And, with the right medication, we should be able to get her to a seizure-free state with minimal, if any, side effects for a couple of years and then wean her off the medication all together. Dr. Perry has chozen Oxcarbazepine for her due to it's very low percentage and mild occurrence of side effects. It also has a pretty wide range of dosing options, so we can start her out on a very small dose, and increase as needed until we get to the right dosage where she is no longer having any seizures.

Dr. Perry has also asked us to do another EEG. Not only does he want one in his own facility that he can review himself, but something could show up on this one that the first did not show. We are scheduled for another sleep deprived EEG this Thursday at 3pm.

Overall, we learned a LOT. We absolutely loved the new facility and the new Dr., and really feel that we are on the right track. While we are not thrilled about medicating her, we now understand why it is the right move at this point. We know that if we see side effects that we don't like, we can switch to another medication until we find the one that is right for her.

For those of you on the prayer wagon....what we pray for now is that we can go easily onto this medication, and that we do not see ANY side effects. Aspynne is the most precious little girl ever (yes, I'm biased). Her personality is PERFECT and we don't want ANYTHING to change that.

I will keep you all updated as we progress onto the meds, and after the EEG on Thursday.