Many of our friends ask how Micah is doing and so I wanted to write an official update on his progress thus far. As most of you know, he was hospitalized last October for 4 days because of uncontrollable seizures. He was still not completely seizure free when released from the hospital. The meds did help him and we were able to go a week or so with no seizures. Anyhow, to make a long story much shorter, it took about 3 months to finally get some good control over his seizures but at that point he was pretty medicated.
In Jan. of this year, we scheduled an appt. with a Functional Medical doctor in Colorado. He ran a series of tests and found Micah had parasites, leaky gut syndrome, heavy metal poisoning and candida. He felt that all of these could contribute to seizures. He was put on a regimen of supplements and a special diet. We began to see significant improvements by March. He began sleeping through the night again, became much more alert and began speaking in full sentences again. He quit repeating himself over and over and stopped talking about things that weren't there or didn't make sense. He laughed and started singing like he used to. I can't tell you how wonderful it was to hear him giggle after many months of a stoic countenance!
Now it is July and the Colorado doc says we can start tapering his meds! This is a praise since we still have many angry, aggressive behavior days. It is so discouraging to see your child treating others rudely, shoving and sometimes even biting others because they are angry and unhappy. The medication Micah is on causes aggression and suicidal thoughts. So this is why we want to decrease his medication. We feel he is way over medicated. The good news is this month he has had many more good days than last month. He is down to 1100 mg a day instead of 1300. We are taking it slow, so his improvements in this area has been slow too.
We had an appt. yesterday with a local neurologist to see if she would work with us. We still will be consulting with the doctor in Colorado but we need a neurologist to manage his medication. She confirmed to us that yes, Keppra (his med) does cause aggression and she does not usually prescribe it to children who already have some behavior issues because it will hone in on that negative behavior and magnify it 10 times larger! She confirmed to us that his behavior problems are probably due to the meds. The crazy part is that she actually told us that his dosage of Keppra is maxed out. He is at the highest dose there is for his age and weight! We did not know this. No other neurologist told us this. She is in favor of decreasing it but not all the way. She would like to see him at a medium dose which is at 6-700 mg a day if we can keep him seizure free at the same time.
This is great success. No one wants to have him seize again and yet we want our little boy to grow up without constant memories of conflict.
Please, if you think of him, pray that he will stay seizure free while we slowly decrease his medication.