May 30, 2007 - A little scare...

Hello everyone! Last Thursday (5/24) was a little scary for us. We checked on Erik because he was sleeping longer than usual and found him in a seizure. We have only "found him in a seizure" one other time and that was the day he seized all day so this was scary for us. He also was flushed which caused concern about a possible medication reaction. His emergency medication was given and things settled only to start again an hour later. Another dose of his emergency medication was given as well as the only other medication we have to settle seizure activity and then we took off to Duke. The fact that things picked back up after the initial dose as well as the second dose of his emergency medication was concerning because generally one dose not only settles seizure activity but also knocks him out for a day or 2 - literally. The seizure activity continued and was different than in the past - left side opposed to right side was impacted and the movements were large and with his extremities. They were successful in ruling out things like infection, low sodium, etc. but could not determine a definitive cause. He has not gained weight and we have not reduced any medications either - both can contribute to seizure activity. He is doing fine now but we are keeping a close eye on him. Simply - cause of seizure-activity unknown. The EEG team did not arrive in the ED until we had been there roughly for an hour by which time Erik was simply a heavily medicated, sleepy little boy. We really wanted to see what part of the brain was potentially contributing since the left side was reacting so we were disappointed not to be able to determine this through the EEG. Anyway, the timing of this is interesting as we find ourselves in the position of making some important decisions about how Erik spends his days. Is he stable enough for a classroom setting both physically and medically? Would the advantages of being in a classroom setting outweigh the risks of exposure to illness and potential over stimulation? Would he be able to continue to receive aggressive therapy like he is now? We have been spending quite a bit of time contemplating and praying about this in the past few weeks. Perhaps this seizure activity (a day before our meeting with the school system) was a sign from God that our concerns are founded and that a little more time with his current regimen would benefit Erik. We will see. Since the medication has worn off, Erik appears to be doing fine. His smiles appear to be larger and more purposeful too. He even appears to anticipate when we start to tickle him or talk with him which is great to see. We really appreciate the prayers that you lift up for Erik. Please continue to help us pray him to full recovery, pray the seizures away, and that we will make the right decisions for Erik! Love in Christ, Erik's Family

May 18, 2007 - Making Changes...

Hello All! We are doing well these days. the latest update is that we have learned that the doctors believe one of Erik's medications is causing his low sodium. This is disappointing in that the medication they are suspecting is the one that has proven to best control his seizures. So . . . what this means is that we will begin the process of taking him off of one and putting him on another. The new one is interesting to think about in that it is similar to the one we will be taking him off of without the sodium side effect BUT if there are side effects, they can be life threatening. This will necessitate us keeping a closer eye on him for any symptoms of a potential problem such as a rash until we reach therapeutic levels. If he develops any type of rash we have been instructed to get him to a doctor ASAP. We are proceeding with the goal of an effective medication change with no side effects and would like to ask that you pray with us for this to be the change we have been waiting for to control his sodium and seizures. The introduction of this medication will take ~2 months. He has been content these days with an increased appetite and interest in things going on around him. It is such a blessing to see him interacting with his siblings and caretakers and demanding their attention! Yeah for Erik! We pray that everyone will enjoy the beautiful weekend ahead! Love in Christ, Erik's Family