Tuesday, August 9, 2011

Long update

We went in for landons hearing test, and what a shock(insert sarcasm) his hearing is absolutely normal! Duh! I knew that.
Since I last blogged we have been to Philly twice. Landon had a prolonged EEG the first time, which showed his seizures, and nothing new really. He also had a MRI which came back normal. At first I wanted the easy fix, and seizure freedom. I keep reading stories of babies/kids who have brain surgery and are seizure free and do very well. So after the news I was diaappointed. Our wonder doctor then told me very positive uplifting words, and said an abnormal MRI would have only made landons case more confusing, and he was very happy we had a good MRI!!! I left feeling happy with all the results!

Landon is currently on Clobozam 15mg-am and 20mg-pm, topomax 50mg-am 75mg-pm, Zantac, and a vitamin. His g tube it working great! I am SO happy to not have the ng! We did a very short trial of lamictal, and after only 4 days Landon was going backwards with his cluster seizures, and we pulled it. We increase the clobozam yesterday to 20mg at night. Anyone else see increased seizure from lamictal? And was it as soon?

I think that is all I have to update for now. Prayers as always!!



  1. I have checked on and off for an update. I'll keep praying for Landon. :) Hugs!

  2. We haven't tried Lamictal, but a few weeks ago we tried Sabril, hoping this would be our wonder drug, but it made everything worse! After only a week we stopped it. Now we will be seeing an epilepsy expert who will hopefully get to the bottom of things! Levi is on Topamax, Keppra, Phenobarbital, Clonazepam, and Nexium. We continue to pray for Landon! www.prayforlevi.com

  3. I just happened across your blog by chance...my son also has a severe seizure disorder...he has been on several medications over the last 4 years...but the only one that totally controlled them was the depakote, which sent him into liver failure...sooo we had to pull that one. Anyway...I came across your post about c-diff...have there been any more issues with it? I was just searching for cases of c-diff and seizures...trying to see if it could be a cause for our little guy.