Thursday, January 29, 2009

Infantile Spasms

"When the world says "Give up," Hope whispers, "Try one more time." ~Author Unknown

Well, we just returned from the Neurologist at Children's. It was a very good visit. The Dr. spent about an hour and 45 minutes with us getting our history, etc. To make a long story short...(yeah right!) she didn't say anything different about the structure of Kendall's brain. She said we are doing all that needs to be done; however, the cause is completely unknown. She was a bit more positive when it came to Kendall. Not so much on what she will do or won't do, just in encouraging us to look at what she does and loving her every step of the way. Her bedside manner was waaaaayyyy better than Dr. Marks. Of course, we liked Dr. Marks, but now we are in the throws of making a big decision. More on that in a second...

Looking around the waiting room in any Neurology department is interesting to say the least. Especially when you are there with your baby. I talked myself out of the normal hyperventilating panic attack I usually have in crowded waiting rooms at Children's Hospitals. See... I'm becoming more mature by the minute! There were children with all sorts of issues. Most of them there with parents who look exhausted. (I guess I fall into the same category now.)

Well, after the lovely Dr. listened to me explain our concerns about Infantile Spasms, what we were seeing, how often, time of day...etc...she took a look back at the records of Kendall's first two Video EEGs from Cooks. Remember...the ones where they assured us they were not Infantile Spasms, just normal movements from a baby with an immature nervous system?? Well, she quickly told me there was "evidence of pre-emergent hypsarrythmia" That's the pattern for Infantile Spasms. So, she recommended we come back tomorrow morning for a regular EEG, then schedule the 24 hour video EEG the first of February. She explained the interesting thing about Infantile Spasms is the waves are up and down, but when the seizures actually occur they flatten out(The nurse from Dr. Marks office still hasn't called back.) She then proceeded to tell me we needed to change her medication now. She said there has been proof that Topamax does work, but the treatment needs to be fast and aggressive. (something about kg's / mg's??) So, she sent us home with a plan to end the Klonnapin (since the side effects are out weighing the benefits thus far...drooling, lethargic, and still spasms, etc.) and increase the Topamax a lot. This will end us with 4 15mg capsules in the morning, and 5 15mg capsules at night. (currently we are on 1 15mg capsule in the am and 1 15mg capsule at night) They are going to check her blood work when we go in for the video EEG to find out whether or not she is at risk for kidney stones (one of the side effects) SO... the decision we face is to leave Cooks and Dr. Marks now, and continue with Dr. Cerci, or forget the whole thing and wait for Dr. Marks to schedule the video EEG. I think my decision is made already. Children's is one of the best hospitals. Also, it seems that Dr. Marks doesn't really care too much about the possibility of Infantile Spasms. I think he thinks she already has too many brain abnormalities for it to really matter. This Dr. says we need Kendall to be the best she can be, and the seizures are not helping that. So, I think it was just timing. I'm totally OK with driving the extra distance if it means better care and better Dr's.
It seems we have now turned a new corner in our journey. Please keep us in your prayers as we make the decision to change meds, Dr's, hospitals, etc...
I can usually think through decisions like these pretty well, but since we have to make a decision by tomorrow...I'm frustrated and feel rushed.


Reagan Leigh said...

I am SO glad you found a more caring and aggressive doctor. I've mentioned before the importance of treating Infantile Spasms aggressively and I'm so glad that your doctor seems to have Kendall's best interest in mind. I would definitely stick with the new doctor...compassionate doctors (especially neurologists) are hard to come by and it sounds like you've found a good one. Hang in and Kendall are in my prayers!

Jennifer said...

You are an amazing Mamma and Justin is the BEST Daddy, you guys will make the right descision!! I love you all!!